First-time parents in our family had a child with Down Syndrome. He is beautiful and the light of their lives. He and his cousins and friends always have a blast together. I can't imagine his parents choosing not to have him because he wasn't perfect or "designer." It seems inexcusable to me.
My best friends are currently trying to get pregnant with their first child. She suffers from a genetic disorder that makes her extremely susceptable to a specific type of benign tumor. Due to this disorder, she's completely blind and has been since age 14. She's also had 7 major neurosurgeries in the past 11 years, the last one in June, and currently has a brain tumor that isn't growing. Without intervention, her children have a 50% chance of inheriting VHL from her. Nonetheless, they've decided to go ahead without PGD. Her reasoning is that VHL is the devil she knows. Her mother wouldn't have given her up, having known what she would go through, and she can't imagine giving up her own children, whatever their problems.
I think my answer to all of this is that it's no harder fearing a specific outcome with your child than fearing the unknown. And with kids, fearing the unknown is really kind of par for the course.
Great blog by parent of an autistic son and 2 neurotypical daughters: http://shroomhead.blogspot.com/
it is interesting, this whole idea of genetic testing. being able to determine what your fate might be, being able to choose...
it scares me in the way it offends you. sometimes i think modern medicine doesn't always provide us with the best opportunities.
I think it makes a big difference what the condition tested for is. If I found out I was going to have a child with a terrible disease/condition that would make them suffer terribly, I could never bring myself to force life - that life - on them. But Down syndrome seems different b/c I've known people with Down syndrome and they seem to be able to enjoy life.
This is beautifully written.
Can't you refuse the testing?
You've touched on so many of the thoughts I've had lately. We're just getting ready to start trying to get pregnant, and while that's exciting, it's also really frightening to realize how truly vulnerable we will be once our entire worlds become swallowed up in love for one tiny, defenseless little person.
I'm pretty sure you can refuse this test, but I guess part of the point I was trying to make is that no matter how many books you read or philosophical points you consider, ultimately you put so much faith in your OB/midwife and I find it really hard to tell them I don't want to do something they want us to do.
This test isn't sold as a "let's see if we should abort your DS fetus" sonogram, it's explained as an effort to make sure your baby is healthy. I doubt many expectant parents have the plums to refuse it.
Also, in an otherwise healthy pregnancy, it's often the first real ultrasound (you might get one at 7 weeks, but then there is only a yolk sac and a little blob). It's a chance to see your baby moving around like a baby.
Kim Stagliano is the mother of three girls who are all on some end of the Autism Spectrum. She writes about the ebb and flow of their conditions and her life as a writer.
http://kimstagliano.blogspot.com/
Schuyler's Monster is a father's blog about life with his daughter with Congenital Bilateral Perisylvan Syndrome— a neurological disorder characterized by paralysis of the face, tongue, jaws, and throat.
http://www.schuylersmonsterblog.com/
Thank you for articulating what most expectant couples now face. The nuchal translucency test (I am assuming that is the one you had) is a measurement they just "do" because they are conducting the ultrasound anyway “as an effort to make sure your baby is healthy.” The "tri-quad" screening is also offered (as an option) to pick apart every chromosome and give you a probability read-out which I imagine is much like that of insurance underwriters. Due in December with our first, we also went through the “second screening” and the agonizing days preceding and following it. We also “passed” this test and opted to avoid any further screening, but we still do not know what we would have done had we “failed.”
This was beautiful.
90-93%??? Really? I don't want to believe it. It's way too depressing. There are many more people in my own life than not who would want to know if their child had Downs not for "an excuse to end a life" but simply for the chance to reoriente themselves toward the kinds of parents who are capable of caring for the special needs of a special needs child.
And, too, I think it's important that people with special needs are recognized for their value sui generis, rather (or more so anyway) than for what they "teach" or "give" those of us who are able-bodied. I imagine I would be a little offended if someone were to tell me that my child's disability teaches them about empathy and about being happy in the face of suffering. What about the fact that he just plain kicks ass? What does that teach you?
I have so appreciated Kate's articulating (so remarkabley clearly) that parental vulnerability, which does start upon conception. I refused these screening tests with both pregnancies on the feeling that we're paid up for the whole course of parenting from the start (that first positive pregnancy test). This was lovely to read. Thank you.
yeah sarah k, I get it. I was making fun of myself for being a douche.
Thank you for your honesty about a very difficult subject. My husband and I refused several tests and genetic counseling (my brother died of a very rare recessive genetic disorder) but the ultrasounds all said things were "normal." Then our beautiful son was born with a completely different and rare recessive genetic condition - albinism. Of course even if we had known before he was born we still would have made the decision to have him. It's been an incredible gift in many ways, but you can't suppress the parental instinct to want life to be easy for your child, to want them to be like everyone else and have all the same advantages. Some days your heart just breaks, as cliche as it sounds.
I'm sure things will turn out just as perfectly with this baby as it did with Juniper, but I appreciate that you are bringing attention to the subject. I would recommend picking up a copy of Exceptional Parent at the magazine rack if you ever get a chance.
I have heard disabilities such as autism and Asperger's Syndrome referred to as differences rather than disorders. I like that.
What I fear the most about having a child who is not "normal" is that I would not be capable of providing the absolute best care for it and ensure his or her happiness. I admire people who do. But maybe I would find the strength if I were in that situation?
When my cousin went in for her 20 week ultrasound along with the wonderful news that her second child would be the girl she desperately wanted came the news that nearly 75% of her baby's brain hadn't developed due to excessive fluid build-up and the chance that it would ever develop was very slim. And my cousin and her husband were given the choice of proceeding with the pregnancy against the advice of her specialist. But it wasn't even an option to my cousin and they kept going hearing the warnings from the doctor and specialists that they need to prepare themselves, that she may live only a few hours or days after birth.
I talked to my cousin when she was about 7 months after a particularly bad doctor visit about what she thought about all of it. And she said that she was this baby's mother and if right now, the only thing keeping her baby alive was the womb that she was providing, then that was what she could do as a mother for her child even if it was only for 9 months of her life.
So her baby was born with extreme hydrocephalus and and to have major surgery at 2 days old to install a shunt and draining tube in her skull. But she survived those first hours and days and months and is now a 1 year old little girl, sitting up, smiling, clapping, on the verge of crawling, and just a happy little person.
Time will tell what sort of lasting damage the hydrocephalus will have, developmental delays can't be accessed until later but I know my cousin and her husband never regret the decision they made.
So I guess my point to this long comment is that you never know. Yes, modern medicine is wonderful and like you said, I can't (and won't) judge unless I'm put in that situation of making a choice. But sometimes tests can be wrong or at least not as bad as originally thought and I don't know if I could ever get over the "what if..."
This was a wonderful post, thank you for sharing your thoughts on subjects like this.
I thought you might be interested in this post from Uncommon Misconception. I thought it was persuasive and decided to go forward with the integrated screen.
There But For the Grace of God...
"I have to get something off my chest. It may start a wee firestorm, but I can't not say anything. I feel so strongly about it that I've just used a double negative.
I cannot stand it when a pregnant woman states that she won't get screening done for particular diseases because, "No matter what, we wouldn't terminate anyway."
First of all, I'm not saying that the option to screen or test shouldn't be 100% the prerogative of the mother and father - it is. I'm also not saying that everyone should choose to test if they're a responsible parent. Some tests are dangerous and scary at best, and others provide sketchy information that could potentially scare the bejeezus out of expecting parents. Those are all fantastic reasons to choose not to opt for a screening.
But please, for the love of God, stop saying that you won't test because you wouldn't ever choose to terminate. YOU CANNOT POSSIBLY KNOW. PERIOD. You have absolutely no freaking clue what you would do if you were told your unborn child had a particular disease until faced with that information. I don't care how firm you think your stand on the issue is, you cannot know.
Secondly, there are many other reasons to have testing done that don't include deciding whether or not to continue the pregnancy. Preparedness is a big one - avoiding the sheer horror of a labor and delivery room announcement of "Uh... wait a minute. Something's not quite right," would be worth it to many people. Preparing loved ones for your baby's special needs. Lining up specialists for the birth and any treatment that might be needed after. The list of things that could be gained by knowing these things in advanced is too long to enumerate here.
Finally, the reason I hate this statement most is this:
By making that statement you are implicitly judging those of us who have made that decision. And it hurts.
None of us who have gone through having to choose to terminate a pregnancy so late in the game would wish that horror on anyone else. But we would appreciate enough empathy to at least phrase your decision in a way that doesn't imply we were amoral parents for ever even having testing done - let alone acting on the knowledge it revealed.
I have beautiful, loving, caring friends who had to terminate for disease that people swear up and down they "could never" terminate for. Down's, spina bifida, muscular dystrophy. And do you know why? Because you rarely see the true faces of any of these diseases. The average Down's child is not Corky from "Life Goes On". The more painful end of the spectrum includes some truly horrifying suffering for the child, and these women made a decision that was perhaps more difficult than mine because they face the judgment and scrutiny of unthinking people every day of their lives. They're desire to save their child was no less than mine, and the pain they live with is no less. It is this sisterhood of women that leaps into my mind when someone makes that comment to me: "We would never terminate."
So when you call to tell me you aren't having testing done, please really think about your reasons before you blurt them out. And if you give me the wrong answer, don't be surprised when I get my hackles up."
I disagree, kate -- I think you can know what you would do. Or at least know what you would NOT do, particularly when you have been through the cycle and delivered a baby in the past. I'm sure there are some who might waiver, but some of us do know what we are not capable of.
I do appreciate the benefits of preparedness before bringing that special baby into teh world though, and if something looked fishy on a routine ultrasound, I might go ahead for a definite diagnosis -- to prepare myself, the specialists, and my family. However, I see little value in the first trimester screening tests -- they just give the "odds", not a diagnosis. Personally, I'd rather spend the pregnancy as healthfully as I can, without potentially unwarranted stress -- my first job in parenting this particular baby is to be a healthy mother.
Finally, no, not every DS kid or adult is Corky. But each is his parents' son. As a parent of 1.5 kids, that just says all I'd need to know.
Tricia from Unringing the Bell blogs beautifully about her daughter Georgia who has Down Syndrome (among other things). She just started an October "Blog Every Day" Challenge and over 40 bloggers are participating in honor of DS Awareness month. Her blog is here:
http://unringingthebell.typepad.com/
Also, that last comment should read this way:
Tricia from Unringing the Bell blogs beautifully about many things, including her daughter Georgia who has Down Syndrome. She just started an October "Blog Every Day" Challenge and over 40 bloggers are participating in honor of DS Awareness month. Her blog is here:
http://unringingthebell.typepad.com/
This was beatifully written and you touched on many of the thoughts that flowed through my head while pregnant with my now 6 month old son. I read all the brochures and read tons online about all the genetic testing and then realized that I didn't care. It didn't matter if my baby had down's or cerebral palsy or some other issue, he was my baby. I knew I could never terminate and so refused all genetic testing. It took a long conversation with my OB who I trusted immensely. The conversation finally ended with her admitting I had done my homework and so she would allow me to make the choice. I think this world will be an extremely sad place when parents can choose their childs genes. Will the world really be a better place if everyone has high IQ's and no acne?
Those tests make me squirm for all kinds of reasons. The second time around I declined all of them because we would not act on the information anyway...if the baby had something that showed up in the ultrasound, something immediately physical we needed to prepare for we would...but Down's Syndrome? No, we would just take the baby home and love it all the same, thank you very much.
One of my best friends when I was little (maybe 4 or 5) was a 30 something year old guy, his parents friends of my grandparents, who had, not Down's but something similar. He was awesome---he acted my age but could reach things on high shelves! I remember him so fondly.
I am having this test done in 2 weeks and see it as an opportunity to be more prepared if something is wrong (I hate even typing that). I would never end the pregnancy because of a defect, but I would want to prepare for facing the difficult road ahead well before my baby enters the world.
Thank you for writing this. Biotechnology can be so incredible personal these days. Parents really are front and center in the debate about how prenatal genetic testing, and its growing in popularity cousin, PGD, will be used, by who, and for what purposes. PGD is typically used to screen embryos for fatal, genetic, childhood disorders. However, there have been cases where its being used to screen for breast cancer mutations, alzheimers mutations - late onset diseases that may or may not be entirely connected to a certain type of genetic mutation. Others have used it to create a sibling who can serve as a stemcell/marrow donor for an older, sick, sibling. One imagines these kids will grow up to ask some hard questions of their parents, doctors, etc.
I think the question is not just where do we draw the line, but who draws it? And with what authority?
NYT recently did an interesting piece about kids living with Downs:
http://www.nytimes.com/2007/05/0.../us/
09down.html
Thank you again. Your post immediately and viscerally brought me back to my pregnancies, and the way the genetic testing we did make us face fears and vulnerabilities I didn't know we had.
This is a weird one for me. I had all the tests done b/c I have a sister who had a Trisomy baby. Only the trisomy that my nephew had was not Down's; it was one of the trisomy conditions that meant he would either be born dead or would die within hours of being born. This all happened in the 70s before testing and it was my sister's first pregnancy. Jason's birth and death were so hard on my sister.
When I got pregnant at 38, I did the testing because there may have been a genetic link to Jason's condition. I did not want to spend my pregnancy not knowing if I was carrying a dead fetus. I know that we can never know really what can happen to our children either inside or outside the womb but for me having knowledge meant abandoning stress--stress that would have also taken its toll on my pregnancy and as it turns out my pregnancy was a rocky one that did not need added stress. How I would have responded to news that I was carrying a Down's baby or other Trisomy baby, I will never know b/c I wasn't and so I cannot presume. I am, however, grateful for the partial knowledge that genetic testing gave me.
Beautiful, Dutch. It's amazing to see how you process into words the things life throws (or doesn't throw) your way.
beautifully written, thanks. I do, however, think that one should know his/her limitations. I already have 2 children; I think on some level it would be unfair to them to bring a special needs child into their lives. yes, it may teach them about tolerance, empathy, etc. but you can't deny that it can also negatively impact them on a certain level. of course, parenting is risky and you can never predict what can happen. but this you can predict. and knowing myself, i dont think i could do a good job raising the 2 that i have and give them all they deserve, if I have a 3rd with special needs. some people can. I could not. To other commenters' points; there are different conditions, however, some more severe than others. I think ultimately it has to be individual's (well, family's) choice.
I want to point out (not to be picky, but because I think it's an important distinction that most doctors gloss over) that an ultrasound is not a genetic test. Down Syndrome is a genetic abnormality that can be pretty definitively diagnosed by an amnio (though the possibility for error still exists), but the margin for error on most pre-screening tests, including the ultrasound, is still pretty huge, with a large number of false-positives.
I refused all the pre-screening tests when I was pregnant, not so much because I felt so strongly that I would carry the child no matter what, but because as a scientist, I am not convinced that they're that informative. I'm not saying the tests are useless - I can't say what I would have done if we had a family history of something really devastating. But I really wish more doctors would be clear about what's really being tested and the quality of results the test is likely to produce.
My coworker was told that her baby has a 1/75 chance of having DS. She's refused to verify the diagnosis via amnio due to the 1% miscarriage risk. Her doctor tried to pressure her into it, "before it's too late" - for termination, of course. They said they're Catholic and wouldn't terminate regardless, and they'd rather not take the risk to find out something they can't change anyway. The Dr. was scornful that they'd even consider bringing a defective child to term (she's switching doctors, obviously). Given all the stress this "potential" diagnosis has given them, I wonder if there was really any value in their having had the test vs. being able to enjoy their pregnancy in ignorance.
Still, I can't say that we wouldn't test, nor that we wouldn't consider termination. My husband helped raise a brother 10 years younger, M., who has severe cerebral palsy (due to loss of oxygen during birth - like Kate said, lightning can strike anytime) and is quadreplegic. M. is an intelligent, funny guy who brings joy and awe to everyone who meets him. However, the reality of raising a special-needs kid is daunting, and my husband, having been through it, is scared to death of having to do it again, and to be able to choose... Well, it's just hard to say.
So, I just can't bring myself to judge anyone for what must be an agonizing decision either way.
I opted for the test even though I am young. I wanted to know, to prepare, if the results showed a trisomy.
I had a family friend who had a daughter with Down Syndrome. Her intelligence aside, she had several serious heart defects (somewhat common for those with Down). Several surgeries later, she died of complications.
As you so eloquently state, tragic things may always happen to a child. But the inevitability of the sort of things that happened to my friend's made me wonder about suffering. About what duty, if any, I have to prevent it.
I think Uncommon Misconceptions' writing about her struggle with genetic defects (and ultimately the termination of her pregnancy) are poignant, beautiful, and heartbreaking. I think, like her, it is almost impossible to know what you would do until faced with a terrible choice.
There is an excellent books about raising a child with Down Syndrome, Choosing Naia by Mitchell Zuckoff.
Your writing is wonderful. Wish you and Wood the best in the coming months.
Thank you. Beautiful and thoughtful. I will be coming back to read more for sure.
Beautifully written, thoughtful post. I second the recommendation for Schuyler's Monster, the parent site of which is at www.darn-tootin.com.
I'm curious - did they do the screening without your consent? My OB offers everything under the sun but it's up to me whether or not they do any of it. We are currently pregnant with our second child - after two miscarriages following normal, healthy baby number one - and I turned down all the genetic screening expressly so I wouldn't be faced with such a choice. I don't want to spend my pregnancy worrying over some test result that could turn out to have been a false positive in the first place. Kate is exactly right - parenthood is a gamble no matter how you slice it.
This is an amazing blog. A mom writes about her family and her sone who was born with a genetic disorder. Throw in the fact she makes beautiful jewelry as well and it is a keeper!
http://lisaleonard.blogspot.com/
My youngest sister has William's syndrome, so we were offered testing to screen for it early on in our pregnancy(this was 8 years ago before they did it routinely). After much discussion, we decided we didn't want the testing. My sister is an indispensable part of our family, and worth all of the challenges in caring for her, a new baby with WS would have been equally beloved and valuable to us all.
My children (it turned out to be twins) didn't have WS, but do have severe environmental allergies and multiple life-threatening food allergies. No prenatal test could have warned us of the difficulty of their first few years, or of the many changes we would have to make to our lifestyle, or of how we would almost lose one of them twice. I'm not trying to compare anaphylaxis and allergies to having a syndrome like Down's or William's. I realize poignantly that in the grand genetic dice roll we have gotten of very lucky, but life isn't perfect. It isn't meant to be. We didn't end up with the healthy babies we had envisioned, but that's OK. They're amazing and wonderful and exactly what we needed, without even knowing it, and so is my sister.
I too, worry about the idea of culling out all of the imperfections. How many parents would choose to have kids who can't go outside for half the year? Who could be snuffed out by a chance encounter with a microscopic amount of egg, or peanut, or one lousy green pea? It's a little chilling to consider, where this could lead.
That being said, I could not judge someone else for terminating a pregnancy. I have an excellent support system, and enough financial and emotional resources to take on the challenging, exhausting and wonderful job of raising a special needs child. Not everyone else is so lucky.
Congratulations Dutch and Wood. I'm sure that, whether your new little one has Down's or not, he will be loved wildly, and brought to his own full, beautiful potential through the years, whatever that may be.
holy shit, that was a wonderful, touching post, dutch. my husband and I are trying to have our first baby right now (well, i mean, not right now as in while i type. i mean right now as in tonight or tomorrow morning...) and i didn't even know that genetic testing was an option i might be faced with. thank you so much for the post and your blog. it is seriously amazing.
My oldest child has Down syndrome. His diagnosis was determined before his birth, by way of a blood test, which lead to a high-level ultrasound, which lead to an amniocentesis. My husband and I have faced many challenges alongside our boy in his three years of life, including open-heart surgery and leukemia. But I admit, without shame, that raising my son is my greatest achievement. I love him without condition.
When I got pregnant the second time, this time with twins, I declined all prenatal testing. None of that meant anything to me anymore.
Our family does have a web site, and I do maintain a blog on that web site. You can link to my url below.
I want to emphasize before things get too out of hand here that I am not talking---or even capable of imagining---situations like some people have started to describe in these comments, where the fetus is incapable of living on its own or will suffer tremendous physical pain if allowed to live. I don't know how I feel about that---I haven't had enough time to think about it---and this post is not meant as some kind of statement about those situations. I wrote this because of the nagging emotional struggle I've felt since we had that initial ultrasound.
I understand the desire to quote heavily from Uncommon Misconception. Julia has obviously had a lot more time and reasons to think about these issues. I am not saying that I or anyone else should ever be this strawman who says, "I'd never terminate a wanted pregnancy under any circumstances!" What I'm saying is that I object to the systematic "routine" of this relatively new first step towards more thorough genetic testing, particularly because the end result has been shown to be 90-93 percent of diagnosed DS fetuses being terminated. I like the idea of the group here in the Detroit Area who at least tries to educate those who receive the diagnosis about life with DS kids. No, not every DS kid is Corky. But maybe more than 7-10 percent deserve a shot at life.
Ali -- as M pointed out above, then nuchal translucency ultrasound, which is what we had, is not genetic screening. It's an ultrasound. And yes, we could have refused. But it was the first real chance we had to see the baby, so we did it. And the results were fine. I wasn't completely comfortable with the decision to do it, but it was the easiest route to take.
Wow. I'm a mama who chose not to have the testing for a variety of reasons. As you said, thousands of years kept things mysterious. A little mystery is okay for me. These tests warrant more tests, up the possibility for miscarriage, and are not 100% accurate. I've had two close couple friends who were told their child would most likely have Down's, and then their children did not have it. AND, Nothing can prepare you...But, this is only my opinion, and everyone else's opinion is valid, too. Anyway, the whole point of why I say this is because we all have choices, and I feel OB's sometimes bulldoze us with their modern technology. Having a child carries so much weight, and is so scary that we question our own wisdom. If you don't really want the test, don't do it. If you feel like a lab rat, maybe one should look into a different OB--I speak from experience--I felt like a lab rat the first time around--had an OB made me cry a couple times with their dehumanizing tech talk. I'm trying a midwife this second go. And if a midwife sounds to hippy, thats okay too.
My cousin did the genetic screening with her first child, and the results were frightful enough that the doctors advised her to terminate the pregnancy. She didn't, and her perfectly normal newborn is now a perfectly normal 3 year old.
In both of my pregnancies, the doctors asked us whether we wanted to do the genetic screenings. In both instances, we opted against it.
All this testing gives us a false sense of control. People make choices about having or not having babies every day. There are no guarantees. If genetic screening and subsequent 'choosing' to continue or not with a pregnancy makes us more intolerant to all the different faces of humanity then we have lost something. However if we can embrace those who 'choose' to carry their babies to term and raise them as best as they can and embrace the babies as members of society then we gain. Unfortunately our history doesn't speak well of the future.
I so enjoy your blog and this post hits close to home as I, too, am expecting my second child. We have declined all genetic testing and will deal with any issues if/as they arise. I am also offended by the early screening (known genetic issues aside) for the burden it places on parents to have to decide "while it's still early". It is no longer early enough after that positive pregnancy test
I found this post through Tricia at Unringing the Bell... and I'm glad I came over for the read.
We have a daughter with Down syndrome, 10 1/2 months, and we've been through open heart surgery, 9 months of NG feeding and now a G-tube. She's absolutely precious with the most amazing personality, and she's much tougher and more patient than either of her parents. Are there tough moments? Goodness yes... but not nearly enough to outweigh the delight that fills my heart when she giggles or grabs my face.
She'll eventually decide she wants to drink, she'll walk and run, and she'll go to school. Even if something occurs that keeps those things from happening, I am a better person forever for knowing her and learning the lessons of trust and unconditional love that have now become a part of my being.
Feel free to stop by her blog at http://braskabear.blogspot.com or mine at http://justrk.blogspot.com for a peek at life. There's an amazing blog community of literally hundreds of DS parents, and it's been that resource that's probably helped us most.
No, not every child with Down syndrome (not Downs as is so often referred) is like Chris Burke (Corky). I do not judge those who have decided to terminate a pregnancy for whatever reason. I do judge harshly the medical professionals who cannot give accurate and current information about what the prognosis is for Down syndrome.
Yes, heart defects are more common. Yes, there is an increased chance for developing leukemia. They relate those facts, but the other things they tell are not true anymore. They often tell parents that their child will never read, write, spell, or learn anything (despite the fact that research shows the IQ for children with Down syndrome has gone up 15 points over the past few years). That their child will be a "blob". They show videos showing institutionalized children. They tell them their marriage will fall apart, again going against current studies. Most doctors never give their patients a chance to make an informed decision. And that's what bothers me most of all.
My son has Down syndrome. My expectations of him are no different than if he had a typical number of chromosomes.
I'm with M and his/her comments above. I declined the quad-screen test during my pregnancy and did not have a nuchal measurement done. My OBs only do the latter should the former indicate it, and there was certainly no pressure to do either. "No thanks." Was met with a cheerful smile and comfort in being told that many people decline the tests. My daughter was thankfully born healthy.
I did opt to have a Cystic Fibrosis carrier test done. My husband's family is a carrying family and have lost one child to CF and have a set of twins living with it now. I, personally, needed to know if our child would have an increased chance of the disease. Turns out that I am not a carrier, so our children may be carriers but they'll not be born with CF. It is glorious that medicine offers this information to us, in the same way that it is terrible that it offers this information to us.
Not everyone gets these tests to determine whether or not a child is worthy of life. Many people get these tests because they don't feel worthy or prepared for the specific challenges and privileges that come with disorders, diseases, and differences. And what they do with these results varies greatly. Preparation, tears, termination, education, any combination thereof... it is entirely personal and I can't damn anyone's choice.
I think with parenting and family comes the realization that you would never have your child any way than he/she is. That is called unconditional love. That we each feel this for our own children doesn't mean that everyone can handle the enormous responsibility that comes with a child's unique needs -- "normal" or otherwise (and, oh dear, are there extremes well beyond DS or deformities).
I hardly think of making a difficult and complicated decision when given terrible news as an "excuse" or is done with "ease," myself.
my guess is there are just as many people who find it to be an easy decision as there are those who do not consider a DS diagnosis to be "terrible news."
And then there are all kinds of people in between.
Like Anne, my son has Down syndrome, first picked up by a blood test, then some very questionable soft markers on ultrasound, then finally an amnio. We declined the amnio until I was 30 weeks pregnant, because at that point, the baby had an excellent chance of survival should I go into labor or have some catastrophic side effect of the procedure. I am now pregnant with our second child, and we have declined all testing. We will be having an anatomy scan to make sure everything is where it belongs, but as far as specific testing for chromosomal issues? Nope. The non-invasive screenings offer iffy results, and I'm not interested in any invasive testing risks, however slight.
I am forever grateful that we chose to do things the way we did- I can't say with any certainty that we would not have considered termination. That choice would have been based on the very bleak information we were given by our perinatologists, and so far, we have not found any of the doom and gloom to be true. We were most definitely treated as if we were completely out of our minds to continue the pregnancy with no further testing after the triple screen came back with an increased risk. Everyone in the peri's office fully expected us to do the amnio immediately and then proceed to terminate ASAP.
I was speaking more generally than DS when I said "terrible news." If we're talking about only one issue and only one test here, then my comments are not entirely applicable.
I thought I made it clear I was talking about DS.
We didn't have any of those tests. They don't make you - you don't have to. Why bother? You get what you get. : )
I didn't read your other comments first - I understand now that it came in a package with the ultrasound, and I'd never turn down an ultrasound. I wished and hoped for them and sometimes tried to think of excuses why I needed one!
we had all the tests. we'll do it again, and i've argued the point of being prepared for whatever child you're blessed with to parents who feel that not knowing is better than knowing til i'm blue in the face.
i am of the extremely strong opinion that as parents, we owe our children the very best we can to them at every stage of the game- and if that means i get to find out at 20+ weeks that my infant will need a neo-natal pediatric cardiologist in my delivery room, or a squad of other specialists to ensure his or her health and well-being, then you can be damn sure i'll be doing that. i'll also have 20 weeks or so to get my own shit together and start to prepare for what my child will need for the rest of their life.
i'm sorry, i'm not trying to piss any one off or offend anyone here, but in this case i just think it is so unfair to the child when something that could have been screened for and prepared for wasn't, and everyone is behind the eight ball on delivery day. i'm not saying you can't move forward and have a good outcome, but "i didn't want to know, because it doesn't matter" screams to me of selfishness, especially if you would never terminate anyway. isn't it better to know what you can in advance?
Gotcha - my interpretation of what Dutch wrote was that they did the test without your prior knowledge and I was surprised by that. In reading back over it I see that wasn't the case. And please understand I'm not judging your decision to go ahead with it - I'm all about medically justifiable chances to take a peek! I'll be 35 when this baby is born so I've hit that magic age when they start terrifying you with the prospect of all that can go wrong. My sister-in-law was 35 when her first was born and the ultrasound showed a nuchal thickening - her son was and is completely normal. I'll still do all the routine ultrasounds, etc., but I'm scared of being burdened with information that may not be accurate.
we're about to have our NTU in a couple of weeks. we debated on whether or not we wanted to go in for this "special" exam because regardless of the results, we'll continue with the pregnancy. but echoing wood, we want to see the baby. we had our first ultrasound at 7 weeks, but this test will be in 4D(!) and we're so excited to really see our baby for the first time. we won't be doing the CVS or amnio because of the slight miscarraige risks. great post dutch.
Amen, Dutch.
And for those reasons, I declined that test and all other "screening" tests. If it's not something that needs fixing in utero, then why bother? I'm not going to do anything different. So I won't pad any more medical/insurance pockets with unnecessary testing $.
Gives me the heebie jeebies.
The author of mommylife.net has 12 children, four of whom have Down Syndrome (3 of those are adopted). She is a conservative Christian, so a lot of her beliefs are probably different than yours are. You'll probably be able to appreciate her posts on Down Syndrome, though. 
i think it's important to prepare for the birth of a child with developmental differences. certain physical limitations such as heart defects that may need immediate surgical intervention can be planned. those things can be picked up on an ultrasound, though; i'm less sure about the genetic testing side of things. more neurologically based challenges could be more difficult to anticipate.
i work with families with kids who have developmental differences like ASDs and DS, and i see a lot of the struggles that they face - joys, yes, but struggles too. as someone helpfully pointed out above, though, there are so many different challenges any individual faces over the course of a lifetime that it's hard to qualify one as "worse" than another - they're just different. i've met otherwise typical kids born prematurely who can barely speak and kids with down syndrome who are eloquent when talking about their thoughts and emotions. you just never know.
anyway, thanks for touching on it. it's something that's been on my mind as i, with a strongly family history for autism spectrum disorders, prepare to get married and contemplate my own children in my not-so-distant future.
a great book that touches on this topic is "the memory keeper's daughter." i highly recommend it.
"i'm sorry, i'm not trying to piss any one off or offend anyone here, but in this case i just think it is so unfair to the child when something that could have been screened for and prepared for wasn't, and everyone is behind the eight ball on delivery day. i'm not saying you can't move forward and have a good outcome, but "i didn't want to know, because it doesn't matter" screams to me of selfishness, especially if you would never terminate anyway. isn't it better to know what you can in advance?"
I just wanted to point out that there are other reasons besides never terminating to refuse the tests. When I had my first abdominal ultrasound while pregnant with my daughter, I could actually feel it. It was an unpleasant, vibrating, tingling sensation on and beneath the skin of my stomach. I had to restrain myself from jumping off the table, it was that unpleasant. At the time, it never crossed my mind to consider what my daughter's experience of the u/s may have been like. When the OB used the doppler to check her heartbeat, we always chuckled over the fact that she immediately moved as far away from it as she could get. I no longer think that is funny. It is only now, in hindsight, that I have come to understand that the fetus -- baby -- might be affected by these tests. Not necessarily in a "medical" way, but maybe it is an unpleasant, unwelcome, scary, or perhaps even painful intrusion into what is supposed to be the safest place in the world -- the womb.
I am pregnant again (10 weeks), and while I won't argue with the validity of knowing about possible complications ahead of time and being able to prepare as needed, I feel that I must weigh that against what *I* believe might be negative effects of these tests on the safety, comfort and security of my baby. How can we know how a baby experiences life in the womb?
This is an intensely personal decision, and each family has to do what they believe is best. I have decided not to do any testing, but it's not because I know I wouldn't terminate. I don't feel that I can honestly say what I would do if faced with such a choice.
In my case, the decision is based solely on what I believe is best for my baby. I would love to have an u/s to see my baby and know the sex ahead of time. I would love to use a doppler so I could hear the heartbeat at 12 weeks, instead of at the 18+ I'll have to wait by choosing to use a fetoscope instead. But I have decided instead to err on what I believe to be the side of caution. The small risk of genetic defect (and my personal desires to know the sex, etc.) is not enough to outweigh the possible effect of the tests on my baby, or my desire to keep my womb as a quiet, calm, protected environment for my child.
I'm in my late 30's and hoping to have children in the next year or two. I do not want my children to be born with DS. I'm sure I would love my children no matter what, and know I would do everything to provide them with a safe loving family. But what happens when they grow up? This world is not kind to those with physical and mental differences. Who is going to advocate for them when they are 50 and I am in a nursing home?
It's amazing to me how so many adults can look at a child with DS with compassion and love and agree to provide all the services they need. And yet those same adults, faced with a DS adult who is no longer an adorable wee thing, will turn away in fear and disgust. I will not knowingly do that to my child. There is little we can control in in our children's future, to me it would be cruel not to make the choice to terminate a DS fetus.
I'm electing to go forward with our baby's genetic testing. This is our first pregnancy. My husband is in the military and we are currently stationed overseas. To me, testing and possibly having to make a difficult decision are a part of being a responsible mom. More than likely, I will be raising this child alone quite a bit, while my husband faces constant reality of deployment. Both sets of our families are half way around the world. I NEED to know to prepare myself.
My husband and I refuse to take these test. What ever card we are handed we will glady endure. They cards are not always the east, sometimes they really suck. Our daughter had open heart surgery this past July, at 8 months old. And she is amazingly strong and bounced back so fast it doesn't seem real sometimes. Then I see her beautiful scar and thats ok. Her condition was very rare and not genetic, it was nobodys fault. If it wasn't for the virus she caught, we might have never known until it was to late. The only test I will agree to, this time, is an deeper ultra sound of the heart.
I once heard a mother say, "My son is NOT a Down Syndrome baby. He is a baby with Down Syndrome." And he is an amazing baby at that.
I just have to second Kate (and other's) comments about making unilateral "I would never" comments. Life just has a way of turning such statements upside down. I also have to say that I get such an incredible sense of judgement from this post and from the comments, something I really don't expect from Sweet Juniper or its readers generally.
My husband and I have been trying to get pregnant for over a year. I want it more than I have ever wanted anything in my life. I want motherhood more than I ever believed it was possible to want something. I also have a full brother who had down's syndrome. Yeah, I'll have the test and I have to admit, I'm probably in the 90 something percent who would chose to terminate.
I'm ok with that. I'd admit as much to you in person. I get my limitations. I'll own up to them, to my selfishness, to all of the personal reasons that go into that decision. But I'll be damned if I'm going to let people who believe they are on the moral high ground make me feel like a bad person for that. I'm not saying that doing so was anyone's intention, but I really hope that people recognize the fact that statements to the effect of "I would never test because I would never terminate" are so incredibly loaded with judgement. It's one of those statements that really draws a line and implies that there is a right and wrong side to be on. For those who would deny that, let me tell you how incredibly hard it was to post this, knowing the judgment it is likely to bring. It's like standing up and saying you're a really crappy person because you'd abort your kid. The reason I will post this is because I really believe in reproductive choice, both legally and personally. I believe there is no decision so personal as conceiving, carrying, delivering and raising a child. I don't think I have any right to make those decisions or to pass moral judgement on them and I don't think you have any right to do those things to me either. On a legal level, I guess I get really scared when a group I had labeled (whether correctly or incorrectly) as being relatively liberal makes such incredibly pejorative statements about such an incredibly difficult and personal decision.
In the course of my undergrad studies I took a class from a really great professor called "Feminism, Bioethics and the Law" and these types of tests, including amniocentesis, were the kinds of things we discussed. It's interesting, Dutch, that you say you weren't completely comfortable with the test, but it was the easiest route. I think many of us feel that way in regards to doctors and it was that exact attitude that we were trying to deconstruct in the class. Perhaps it's in large part because having a child throws these things into high relief; we feel more "ownership" of our own bodies and may be more willing to question doctors' opinions on things like knee surgery as opposed to a time when a woman's body is, in some sense, not entirely her own. Of course, the further issues were that we can't really do anything about DS or any of the other complications (I dislike that word in this context, but cannot think of another at the moment) that are tested for as well as the fact that mothers in poorer neighborhoods are given these tests often without being asked first. It's been interesting to read the comments and see how many readers want(ed) to know for the sake of preparation, while others have opted out.
I have yet to procreate,although I think the maternal bug has started biting me a tad since I turned 30, but what you brought up in your post are things I've mulled on and off over the years since that particular class. Does it scare me? No doubt.
(Sorry for the long comment.)
My youngest child has Down syndrome. He's my 4th, and I opted out of all testing with him. Frankly, had I gone ahead with the testing, which was heavily indicated due to my age, I have no idea what I would have done. I'd like to say I would have done the honorable thing, the right thing. But would I have reacted from fear of the unknown? How could I know what I might have done, not having actually faced that decision?
To say I am glad now to have my son is an understatement. But don't get me wrong: life with a kid with DS isn't all feel-good rainbows and unicorns. There are real issues that we still have yet to face. He's nearly 4 and is engaging and cute, but what about when he's in his teens, his 20's and beyond? I can't picture what his life will be like.
I've written both on my personal blog and at Strollerderby about my thoughts on DS. I've come to the conclusion that I simply can't judge someone else for their actions. It breaks my heart to think that through what I believe amounts to eugenics in this new round of prenatal testing, my son will see fewer and fewer other kids like himself. But at the same time I defend the right of a scared parent-to-be to do what they really feel is best. I just can't make that determination for anyone, and I'm very glad I didn't have to make it for myself.
This has been a very thoughtful discussion and I've enjoyed it. Thanks.
(for Suki). "I" statements convey the feelings of the individual -- saying I would not terminate and have not had testing has nothing to do with you or anyone else. If a person feels judged, that's not coming from me.
I would never put my child in day care because I believe that a parent's role is to care for their child, not have someone else care for the child. I would never send my child to public schools because I believe they are full of hooligans and will teach my child horrible values. I would never let my child sleep in my bed because I believe it leads to poor sleep habits and a lack of independence. All of those are personal "I" statements, but can you seriously claim they are not incredibly judgemental? Those sort of statements and others being made here just seem to indicative of the whole "mommy wars" thing- like we must declare that there is a right and wrong answer or a right and wrong way to do things so that we can then declare that we are on the right side.
Oh, and one more thing: I may be in the percentage that would terminate, but trust me Dutch, I don't "find it to be an easy decision" either. There's nothing easy about these things any which way you look at them, and I find implying that the decision is easy for some people to be incredibly insulting.
(for Mar) Gosh, I make a personal "I
statement (I feel judged) and suddenly you seem to feel like you must defend yourself. Following your logic, my personal "I" statement has nothing to do with you or anyone else, so why should you feel the need to defend yourself against it?
I'm delurking just to say how thankful I am for your courage in writing about this topic. Your quote, "You only know you have been raised to believe that there is value in every life, and you believe it still," resonates with my perspective exactly. This post, as all of your others, is beautifully written and expresses so many thoughts and ideas that make me shout, "yes!," (as well as usually think hard, laugh hysterically, and wish we could be friends after we make our cross-country move to Toledo, OH).
We have a daughter almost exactly the same age as Juniper, and I am 36 weeks pregnant with our son. For both pregnancies, we chose to have any and all tests at any point, but just for the preparedness reasons. Although we knew we could never actually be prepared, it was that obsessive research tendency so common in us over-educated types to fight for the perceived illusion of control.
We have been lucky enough so far that our extreme vulnerability as parents has yet to be tested in any dramatic circumstances (other than in the usual day-to-day way). But, I'm thankful for the opportunity to be a parent and take the ever-so-huge risk of heartbreak that comes when your heart grows in ways you never imagined as you love your child.
gearhead mama, i wanted to apologize. i didn't mean to imply that i don't understand or respect a parents right to choose what they think is best for themselves and their children. i do believe that, especially when it is an informed decision, and not one grounded in fear or ignorance.
i just have had too many go-rounds with people who claim "i would never terminate anyway so what do i care" as a grounds for their decision not to test. these people as a rule seem to approach many parts of parenting with their heads in the sand, and it gets to me sometimes. my 'side' (for lack of a better term) is that i want to be as prepared as possible no matter what challenges or issues my child may be born with or face, when possible. but, i'm kind of control-oriented as a person.
i'm also not saying i wouldn't terminate, for whatever reason, nor do i judge people who make that choice. i know that that decision is one of the hardest ones any parent ever has to make. ever.
i respect your decision based on your experience with the ultrasound- i've never had that, fetal or otherwise. apparently neither did my kid b/c we actually had to go back twice for that nuchal test since she wouldn't wake up and move so they could get the specs on her neck. now she won't stop moving. go figure.
i apologize for my tone earlier. i went off 1/2 cocked and probably could have used a little time and editing to have said what i did in a much better way. best of luck with your pregnancy!
Jennifer Graf Groneberg writes beautifully about the subject of prenatal diagnosis of DS here:
http://www.mamazine.com/Pages/
co...n135_aid17.html
For many years, my father-in-law worked in a facility where children with the worst of the worst genetic abnormalities lived when they could no longer be cared for at home. Some of these kids were DS kids.
I think this is probably an unpopular statement to make, but after having babysat for DS kids and hearing my father-in-law's stories, I would not only welcome screening for a fetus of mine, I would also probably terminate that fetus if an amnio showed it to have DS.
And you know what? I don't begrudge ANYONE who would do it differently than I would; I certainly don't judge them for making an incredibly difficult choice.
To me, it's a simple matter of knowing that I would not be a good parent to a special needs child. Of course, some special needs cannot be predicted - cerebral palsy, for one - and if I had a child with CP, I would parent it as best I could. But I would never knowingly put myself in a situation where I know I would automatically be at a disadvantage.
You are parents and I guess that most people who read your blog are either parents or soon-to-be parents or are really trying to become parents. I am not one of those, although I do want children someday (sooner than later). But your judgement (in a general sense) saddens me: "(...) where it can be flushed out with Misoprostol". I thought you lived of grays, not of black and whites.
Sorry for two comments here, but I did want to note that people who think they're being non-judgmental by saying they "don't test because they would never terminate" are, indeed, being judgmental. As is the statement about "flushing" a fetus with Misoprostol.
In terms of factual statements, Misoprostol is very unlikely to be used to terminate a fetus diagnosed as having DS because Misoprostol is most commonly used prior to the 9-week mark. As I understand it, DS is most commonly diagnosed at the 20-week mark, making Misoprostol and unlikely choice.
I also believe that discussions like these foster anti-choice sentiment towards women.
"I also believe that discussions like these foster anti-choice sentiment towards women."
So do you advocate quieting the discussion in this case?
My perception is that there are a diversity of opinions voiced in this discussion, and if there seems to be a consensus on some issue, it is that women and their partners should be able to have as much information as they want, about what tests are being performed, what the results of those tests actually mean, and about the predicted condition of their fetus, if they choose.
I'd just like to second Elizabeth in reccomending Tricia's blog, Unringing the Bell.
I have not seen a single reference in these comments to abortion as it relates to anything but "wanted" or "intentional" pregnancies terminated not because the woman didn't want a child, but because the woman (or maybe HER HUSBAND or partner) didn't want THAT child. I am sure that there are ethicists out there who could articulate the difference far better than I, but I do detect a very clear difference. I also believe this could possibly be considered a "gray" area. Further, no one has even come to close to suggesting that there should be restrictions placed on this "choice," though in my post I had hoped to suggest that the problem lies with the medical industry exerting undue influence over this "choice" and even forcing it upon couples who might otherwise have no desire to make it.
There is so much potential for slippery-slope histrionics and unintended personal slights here that I am considering turning off the comments. That is not to say I haven't appreciated the comments so far.
Wow - a really good post and a stimulating discussion following it! I think it is important to note that even though there are clearly differences in opinions there is a dialogue happening that is helpful.
I had the nuchal test more because it was a 'matter of course' than choice, then my 20 week scan showed a heart defect that set off the alarm bells for DS. I guess I chose to refuse an amnio - it didn't feel like I actually did any decisionmaking in this process - I trusted my Og/gyn. He didn't really push the amnio either - I just knew that as I was carrying twins there was no way I was even slightly endangering the life of either baby. We knew enough to have the cardiac pediatrician on hand when she was born and I had scans every second day in antenatal care - my babies were well looked after.
Maybe because I grew up with a sibling who is deaf and partially sighted I had a particular view, although not greatly reflected upon at the time I was pregnant. I don't know. I always felt that deafness would be something I could cope with - I had seen the challenges and the good things my sister brought to our family. I now know that sibling experience and parent experiences are NOT the same.
In the end one of my twins was born with DS. Like my sister (who is 43 now) she is absolutely gorgeous, she brings her own challenges to our family and her own joys too.
I think that there is always fate to remind us that no matter how in control we like to be - stuff just happens - regardless of whether we test or not, terminate or not.
Dutch - I am currently pregnant with my 4th. I have always refuse those tests because their accuracy is so far off. Every one of my friends that has a positive on the triple screen or quad screen wound up being a false positive. All it did was stir up undue stress and it put some of the babies at risk when the mothers were pushed to do amnios to find out it was wrong.
I have never felt awful telling my OB no. I hope for a continued healthy pregnancy for you both.
pnuts mom -- I gotcha, and I can see what you're saying about this choice sometimes being a general reflection of parenting style. And thanks for the well wishes !
Thanks so much for posting this. I have a 16 year old son who has Down syndrome and I have a blog at:
www.jodireimer.blogspot.com
Come check us out!
we had every possible genetic test known to man, all came back negative, and our daughter was born with tuberous sclerosis, which is so rare (1 in 6000) that they don't test for it. her heart and brain are highly involved. so far she is perfectly healthy but it's like having a bomb strapped to your baby with no knowledge of when/if it will go off - just constantly hearing the sound of it beeping. it's all fine and good to post high-minded rhetoric about how beautiful the disabled are, but i would do anything to spare my child the discomforts, pains, worries, and potentially life-threatening issues her disease will bring her for the rest of her life. i've been reading your blog fairly regularly, and usually you see past the bullshitty nonsense, but i'm going to have to call this one like i see it.
I've just scanned the comments enough to see how emotional and how charged this discussion is, understandably so.
My only clear feeling is that the only thing that doesn't belong in discussions like this is absolutes. Until you're facing a severe diagnosis, or loss, or sickness, or catastrophic event, you simply do not know what will become important to you, and what will sink into the background.
You don't know what will make you strong, what will cripple you, what will incapacitate you as a parent. Some things completely explode your expectations of what your family life will or should be, and sometimes that explosion matters profoundly, and rattles you forever. Or you may discover it doesn't matter as much as you thought it would.
The only rhetoric I'll subscribe to, given what I've lived through in the past while, is that we can only listen, and be mindful, and be gentle with each other. As parents we're all trying, with our guts and hopes and most intense dreams and fears spilled out vividly for all the world to see, to make the decisions that feel like the right ones.
Andrea at a garden of nna mmoy has written about her daughter who has an unknown condition that keeps her very small. She has said that her blog will be changing soon, but I doubt that she'll give up blogging against disablism.
http://www.andreamcdowell.com/Beanie/
Beautiful post, btw.
While she doesn't have DS, our daughter has severe respiratory and feeding issues (she has a trach & g-tube). After living through 2 years of hospitalizations, home health nursing and "complex medical care", I have nothing but respect for parents of children with permanent disabilities. Raising a child with special needs is rewarding but it is also incredibly draining and difficult for families. I would never give up my daughter and feel like my life is better because she is in it but I can see how some people wouldn't be strong enough to do it. Still, I would be disgusted if a friend or family member aborted a baby who had Downs because it seems incredibly selfish.
I was born with a genetic heart defect, one that can't be repaired with surgery. It has greatly reduced the quality of my lifestyle in the past 5 or so years, as I've gotten older. I now am on a transplant list. Mine is a disorder that hits 1/500-1/1000 live births, depending on the genetic flaws, of which there are 8 known. The genetic testing just came into being in the past 5 years. I've had mine done so my kids can have theirs done once my genetic defect is identified.
Both of my children are special needs kids. They had hundreds of ultrasounds and other prenatal tests because my daughter was IUGR (she stopped growing inutero). None of those prenatal tests could identify their individual problems, my bipolar ADHD son, and my NVLD daughter. There is no genetic testing for those brain defects. But parenting special needs kids is VERY hard, much harder than you could ever imagine.
When I read this statement ""Normal people benefit so much from having disabled people around," I said, thinking aloud. "Disabled people do so much to teach 'normal' people about empathy, and how to overcome actual suffering. So many disabled people somehow find a way to be so cool, and happy," I became livid with anger. I'm glad that you realize what an asshat statement it is. Most disabled people, myself included, are not put on earth to teach you any lesson whatsoever. And most of us not only do not teach empathy, but are treated like 3rd class citizens who don't deserve to be alive. Yes, people with genenetic abnormalities might bring much to the table. Look at Stephen Hawking. But don't for one second think that his life isn't filled with pain, jealously, and anger. Don't think he doesn't want to be "normal", whatever that is.
I have no problem with genetic testing. In most cases they're looking for things above and beyond Down Syndrome. Genetic testing has gone way way beyond what you and I even consider, and yet I know that it's often a very good thing. For my family, I can't wait until my kids can finally be tested for my heart defect, sometime in the spring. If they are free of the disease, it will put my mind at rest that at least they don't have to suffer heart disease like mine. They have enough to deal with just getting through high school with their obvious learning differences.
guess you touched a nerve, huh?
we had "the scare" w/a screening of our first child. We had that conversation about continuing w/genetic testing and why we would do it? would we truly consider teminating? after all, at this point we'd felt her move. My husband works in bio-tech, and there are several medical professionals in the family so we have an idea of many of the issues we could've been dealing with, so we had that conversation and while we'd like to believe we wouldn't have terminated we determined what we also wouldn't bring a child into this world who wouldn't survive for long AND would only have a painful exisistance. Thankfully we didn't have to make that kind of decision.
We did have the testing because we wanted to make sure we were prepared to deal with whatever came our way & had all the right professionals present if needed. Knowledge is power.
I think it's important to remember that everyone has some kind of "disability" just some of know what it is sooner then others.
And here I was just surfing over for a little light reading...
We went in a week ago monday, just into the 12th week, for our first ultrasound screening.
Our review of the results with the midwife was brief. The measurements of the nuchal translucency were an extremely strong indication of chromosomal abnormality.
On Wednesday we met with the genetic counseler who told us the odds were 1 in 2 of a trisomy baby.
Thursday morning we had a Chorionic Villi Sample taken from the placenta.
Friday afternoon we were told our baby has an extra 21st chromosome. Down's Syndrome.
This afternoon laminaria were placed in my wife's cervix. We terminate the pregnancy tomorrow morning.
Have we agonized over the decision? Not really. We've been in agreement about our choice from the start.
Will we feel guilty? Of course we will. We are willfully terminating a wanted pregnancy.
Will we regret it? No. This is not a decision that we would wish on anyone but it is not one that we will second guess.
Would our decision be different if we didn't have a beautiful and healthy 18 month old? Impossible to say
Do we know this is the right decision for our family? Yes
In 1980 my then-35-year-old mother declined the prenatal test which would have revealed that the fetus she was carrying had Down syndrome.
In the almost 27 years since my sister's birth, the closest my mother has ever come to directly admitting she wishes she had done the test was to tell me that if they had known, my sister would not exist.
And I'm sorry if this is going to sound harsh, but my family would have been better off in that alternate reality. Some people are able to frame their lives with a Down syndrome family member in a constant rosy light, but for my family, having my sister has been a long, slow, never-ending, painful rending at the seams.
I do not begrudge anyone their choice to terminate a Down syndrome fetus. I know how wretched and grueling the consequences are of not terminating.
look people, I did not set out to alienate half the people who read this blog or insult everyone who has ever had a prenatal test.
we were told that this first-trimester sonogram-based evaluation of several aspects of the fetus for DS characteristics was relatively new. from the background research I did, it appears that it is a recent but now wide-reaching and fairly routine development. have there been other ways to screen for DS during gestation? yes, but it was my understanding that the fact that this non-invasive test could be done so early in the pregnancy made it somewhat revolutionary, and the reason for that is partly because the termination of such an early-stage pregnancy obviously has different implications in this very complicated world we live in.
I intended this post to be the story of our own personal struggle with this test and its implications not just on our lives but on society in general. There was a huge upheaval in my conscience that has lasted many weeks and I felt the need to put it into words. I did not intend this to be a personal attack on anyone, and I am troubled by how many people have read this post and felt judged or attacked. I don't know how all these other medical conditions leaked into the discussion when I was simply discussing what it might mean to our society that babies with down syndrome are being selectively weeded out of the population. Is that a judgmental statement? Perhaps, but a blog without any judgment is going to be all puppies and unicorns and I doubt you really want to read that either. This is an ethical issue. As an ethical issue, it could spawn an interesting discussion. I am troubled that so many comments bring up these other (often life-threatening) conditions, but few have discussed the other extreme, i.e. other undesirable conditions that might one day be acceptable to identify in the womb and precipitate an abortion.
look, I don't feel angry or judgmental towards any individual or couple who has had to make this difficult, terrible choice when faced with a positive DS diagnosis. I think I made it clear in the post, but apparently not clear enough, that my problem here is with the ethical issue of making this test so routine and available to parents who may not even want to be in the position to make that decision.
If I get any more comments intended solely to attack me because the controversial nature of this post has somehow touched on some personal nerve, I will just delete them.
j's comment above is an excellent example of someone bringing their personal experience to this discussion without using it solely as an excuse to attack me. would j have the right to be offended by my post? sure. but j didn't latch on to a few out-of-context words I wrote to gain some moral high ground. he wrote about his experience, and it definitely added something to this discussion.
no one here really thinks parents who make this decision are bad people. no one thinks this decision and its aftermath are easy. I knew during the two weeks we waited for our results there was a strong possibility I would want my wife to terminate the pregnancy. I struggled and struggled with my conscience. I was extremely fortunate not to have to make any decision. but what's getting lost here in all the personal bickering is whether or not the routine nature of this test is a good thing for our overall society, or whether a world without down syndrome people is a world any of us would want to live in.
Wow - I actually read each comment, because I respect all of these opinions and statements and thoughts. There are SO many different life circumstances out there, with many experiences which lead people to different answers. Many of us think we have a clear grasp on what we would say and do in certain circumstances, but I myself have found that the circumstance itself has a way of changing a person. You get more information, sometimes the information makes a big difference in your choices.
I suffer from the tendency to make "I" statements, which somehow imply judgment of others. I try hard not to judge others for their difficult choices. But we all see people every day who do things we would never think of doing. A very pregnant woman outside Babies R Us smoking a cigarette. A mother with three loud, dirty children walking in the grocery store, when one asks for candy, she smacks him. Can I judge those things? I don't know, and I bet I'd get about 27 different answers to that question. At least. I waver so often between trying to just keep to myself and my own life, and engaging with others in a "we're all human" kind of way.
Above all, I see these comments as people sharing their experiences, as a way to relate to the humanity of the situation. Just because someone says they would never terminate a pregnancy doesn't mean they would judge another for doing so. Just because someone would judge another for terminating a pregnancy doesn't mean that should even matter. We answer to the law, to our spouse (to a certain extent), to ourselves, and for those with faith, to God. It should not matter so much that there are people out there who judge, and who judge us. Fact of life.
Great coda, thank you. It's tough what you do here, and you do it so well (I'm glad it's not puppies and unicorns).
Hey Dutch,
I just want you to know that your post in no way alienated me. When I recounted my experience way back in the 20-somethings of the comments before things started getting heated, I was just trying to broaden things a bit based on my own experience. As someone with Trisomy in the family, I sometimes get stymied when all discussions of Trisomy tend to be about Down's simply because Down's is one of the Trisomy's with a survival rate and therefore we see it reflected in the world around us. The nuchal screening, though, doesn't just look for Down's; it looks for the entire Trisomy spectrum. For someone in my position (with a fatal form of Trisomy claiming the life of a nephew), having the knowledge that came with that testing was crucial.
I also just want to say as aside about the health care system here in my city, I never once felt pressured to take the test (even though it was offered to me because of my advanced age) and I never felt pressure to escalate that first test with more genetic screening. I have heard that other parents have felt this pressure from health care providers and I definitely think that such pressure is inappropriate. In the end, though, I do believe that parents should be offered as much knowledge as they seek provided that the knowledge is explained thoroughly and adequately.
A factor I didn't see addressed as I skimmed through the comments - money. With the shaky, shoddy healthcare system we have going in the United States today, the decision to bring a child with special needs into the world isn't just a matter of having the emotional capacity, but also the financial capacity to take care of them, to know that you can provide for them throughout their entire adult lives if need be.
mk, not sure if you're still reading, but to quote you: "he only test I will agree to, this time, is an deeper ultra sound of the heart." Don't you see how deeply hypocritical this is. You're only doing that, b/c your existing child had a heart problem. but what if there's a different issue with the new baby? Would nt you want a heads up about that? Doesnt mean you'll terminate. Doesnt mean you wont love the baby. Just means you'll be prepared.
As the mother of a joy-filled, healthy 4-yr. old boy with Down syndrome, thank you for this post.
And re: terminating for other conditions that are incompatible with life, watching the 5-minute video called 99 Balloons at ignitermedia.com helped clarify my personal feelings on that subject.
My son is not a burden, he is a gift. Thank you for recognizing that.
I never knew that I liked kids until I worked for the Detroit Institute for Children. They serve special needs kids and each one was a breath of love. They were positive, grateful, innocent, and a joy to be around. I learned so much about cultivating gratefulness during my time there.
P.S. You aren't a douche.
My little brother is 21 with down syndrome. He spends 4 hours 4 days a week volunteering at a nursing home, the rest of the time at school, and spare time on his high school swim team. He's 5'8'' and is in better shape than most of my boyfriends have been.
Though it is the hardest thing my family has ever been through, even if I found out that I was pregnant with a child with down syndrome, I would keep it. Because my brother thinks life is the most fun thing in the entire world, even if he did drink Diet Pepsi on his 21st birthday.
No way I can sort through 100 comments, but I wanted to let you know that this post really touched a chord with me. I think Wood and I are due around the same time (beginning of February?), me also with a boy but my third son.
Maybe because we had to use IVF to conceive son #1, or because I've had three miscarriages, but for us the prenatal screening ultrasound wasn't about "will we keep the baby or not" if something is not right, but simply about knowing for the sake of knowing. When I miscarried at 16 wks last year, the prenatal screening test conducted just before the baby died showed a high likelihood of Trisomy 18, which in the tender words of my OB is "incompatible with life." So for me, while I'd never judge anybody else's choices any more than you would, it was about knowing. While ignorance is bliss, reassurance is better.
Thanks for a terrific, thoughtful post.
unfortunately i don't have enough time to read trough everyone else's comments, so i apologize if someone said this before.
my wife was pregnant with twins, and when the option to take the genetic test came up, the doctor asked us, "if it turns out 'bad', will you still keep them?" we replied yes, and so he said, "then it doesn't make sense to take the test because your actions aren't going to change."
enlightning.
Hello~! We crossed paths for a bit at ParentDish; I write the "A Little More" feature on Thursdays which is, mostly, about my life with my son Avery, who is 4 and has Down syndrome.
I also write other places, most often at my own blog, Pinwheels (http://jennifergrafgroneberg.wordpress.com) and want to second (third?) everyone's recommendation of the blog, Unringing the Bell. Trica, and her daughter Georgia Maebe, are beautiful people.
So usually, when I read something about Down syndrome from a parent who does not have a child with DS, I brace myself. Almost inevitably, there is some slight, some well-meaning, unintentional comment that makes me feel misunderstood and saddened. Your post was extraordinary, because that never happened. For me, your words are exactly what I wished all parents felt...a thoughtful, considered response to what our medical community is asking us, and asking of us, and how we feel about the larger implications.
Thank you for your words. To me, they are like welcome rain.
This is my first time ever commenting here, although I have been lurking for years! I guess this is the post that'll drag everyone out of hiding.
I agree the ethics of this issue are very interesting, but I have found that the comments on this post focus on the narrow issue of individual choice without putting the focus more on the broader societal responsibility. As you have said, these tests raise the question of whether society is better off with people living with DS in it. In my opinion, that question is not best answered by a consideration of people's individual choices. As a society, we generally elect not to foist what would be considered by some to be an undue burden onto those same people. What truly needs to be considered here is society's obligation as a whole to support people with DS to its own benefit. What I mean is that social programs and education need to be put in place to both alleviate social stigma with respect to people with DS, and allow their parents some comfort that DS kids will be provided for and will not be a financial burden that parents may not be able to handle.
If those programs are in place, it is my belief that fewer people would choose to terminate DS fetuses. However, there would still be people who would, and I am also of the opinion that they are entitled to that choice without judgment. I do not believe that forcing people who have been told they have a DS fetus to interact with DS individuals at a time when they are already vulnerable and faced with a terrible choice is the right way to address this. I suspect (although I can't know) that many of these decisions are made as a result of financial and practical realities rather than emotional disconnect from a DS fetus. The benefit of better education for the public would be the improvement in in knowldge for the general public, not just those with DS kids, or DS fetuses, of what it entails to be a person living with DS. Hopefully that would mean that people who received such news would already be aware of these issues and would not need a further crash course before making their decision.
I caveat all of the above with the fact that I am Canadian and therefore we do have some of those programs in place. I wonder whether the termination rate of DS fetuses is different here. Those numbers could provide some support (or not) for my comments above.
I apologize for the length of my (first ever) post. However I do believe that this subject raises very interesting ethical issues that warrant significant consideration.
I studied the ethics of prenatal screening extensively in grad school. I learned of the importance of non-directiveness and full patient consent in medical care. I find it terribly distressing that OBs are administering screening with no explanation of its purpose, and thereby giving parents information that they might not have wanted to have. The American College of Obstetrics and Gynecology guidelines state that all pregnant women should be OFFERED the first trimester screen you describe, and it sounds like you (and probably countless others) were never offered that choice. On top of that, as I understand it many insurance companies don't cover screening tests, so physicians are even making their patients shell out hundreds of dollars for tests that they may not have wanted. Based on what you describe, your OB went against ACOG guidelines and is conducting business in a way that would make both medical ethicists and health economists cringe.
thank you for your insight megan. there was a significant study recently that showed OBs really aren't the best people to be delivering this kind of news to parents (http://pediatrics.aappublications.org/cgi/
content/full/115/1/64):
"Conveying this news to parents, however, presents a formidable challenge to most physicians. Many clinicians admit that they have little, if any, training on how to deliver such information in a sensitive manner. 'In general, what I was taught in medical school and in my training is that disability—no matter what its form—is a bad thing and to be avoided at all costs. Lectures or seminars on DS or other genetic syndromes were geared toward the description of the abnormalities... that children with congenital diseases may find their lives to be rich and valuable was hardly recognized, much less stressed,' wrote perinatologist Steven Ralston."
"Many mothers were upset that some health care professionals intimated that the birth of a child with DS was a regrettable happening. 'Right after [my child] was born, the doctor flat out told my husband that this could have been prevented or discontinued at an earlier stage of the pregnancy,' wrote one mother who had a child with DS in 2000. A mother who had a child in 1993 recalled, 'I had a resident in the recovery room when I learned that my daughter had DS. When I started to cry, I overheard him say, ‘What did she expect? She refused prenatal testing.’ I looked him in the eye and told him that it would not have made a difference. I then asked him to leave and for the rest of my hospitalization not to come near my daughter or myself.' Another mother reported, from her experience in 1997, 'The attending neonatologist, rather than extending some form of compassion, lambasted us for our ignorance in not doing prior testing and for bringing this burden to society—noting the economical, educational, and social hardships he would bring.' Regarding a postnatal visit, a mother who had a child in 1992 wrote, '[My doctor] stressed ‘next time’ the need for amniocentesis so that I could ‘choose to terminate.’
I also have a sister with Down Syndrome, she's 26 years old. My mother didn't know that my sister had Down Syndrome until after she was born, but the doctor who confirmed the diagnosis also told her that this wasn't a death sentence or an across the board "dumbing down", that my sister could also get my father's height or my mother's skills with language. So even though it was some time ago, I don't think my mother's experience with the medical establishment was as bad as it may have been for some.
The thing is. Life is hard. It is. It's hard when you have Down Syndrome, sure. It's hard when your sibling or family member has Down Syndrome. But you know what? Life IS hard, no matter what. Of course we all hope for the best for our children, but in the end they could turn out to be autistic or alcoholics or Republicans. We do our best, but still. Life is hard. You can't prevent that, test or no.
I don't begrudge anyone the decision to terminate a fetus, that's not for me to say, ever. That's between you and your partner.
I only know this. No one in our family has ever ever ever regretted for one second that my sister is here. Not one second. It has been hard, but not regrettable. It has been hard. But ALSO absolutely worth it. I know this as sure as the air that I breathe.
And those people who are able to frame their lives with a family member with Down Syndrome in a constant rosy light? Those people are my motherfucking HEROES.
Dutch, I took your focus to be on the test and ethical aspect of it, as well. I enjoy your thoughtful post. The health care system saddens me because although we all talk about wanting/needing choice and control over our bodies, it is set up in such a way that we as future parents often have little to no information to make an informed choice about all these tests and their ramifications. If we could only somehow have counseling of how to navigate pregnancy for our first OB meeting! But, I suppose this is what Doula's and Midwives are for. If only they were more widespread and mainstream...I have the luxury of living in a place where everything status quo is questioned, and it has helped me in my pregancy choices immensely.
Humbly submitted.
Megan, your comment above summed up my concerns with screenings--not the ethical choices the results of said screenings might raise, but the fact that parents-to-be aren't being offered these tests as a choice. I remember feeling very bulldozed into the screening (which I accepted, not knowing I could refuse) and the triple-test (which I refused after a VERY heated debate with my doctor). But one thing I also didn't know was that neither test would be covered by my (shitty) insurance. That's some more information I would have liked to have had.
this is why i blog without comments. i read this blog because of the honesty... and the awesome picture taking (tho damn the internet for messing that up too) please don't let comments stop you from blogging what you feel you should blog. i look forward to your baby-blogging posts as a young sf lady someday i may be in your position!
It goes to show that there are different options for people to choose from in the field of obstetrics, just like there are options with pediatricians and doctors in general. Not everyone ascribes to the same philosophy, beyond the hippocratic oath (and even that is questionable with some). Not all OBs have the same viewpoint on testing, on aborting, or on what to "do" with the results of said tests, if anything. Clearly, some are just there to provide information for whatever purpose the expecting couple wants to use it for. Termination, preparedness, or nothing at all. I don't know how big of a deal it is for you, Dutch and Wood, that the philosophy of your OB is out of alignment with something you feel comfortable with. If it is a big deal, have you thought about interviewing/switching to another? While it may be complicated to do so mid-pregnancy, it isn't impossible, and may result in a better overall experience. Compared to a woman standing on two bricks, being held up by two women with a midwife between her legs to catch a baby in a piece of cloth, it's a snap! (I totally mean that in a lighthearted way).
I have to say that reading all of these comments makes me feel very fortunate about our local healthcare system. At my first appointment with this pregnancy the educator in our OB practice went over all the available testing, taking great care to explain what each test was looking for and what insurance does and does not typically cover. And, as I said before, she went over the pros and cons of having the information but made it clear that it was my decision. And since I've been pregnant about 47 times in the past year, I've seen several different educators in our (very large) practice. I've had the same positive experience with each of them. Even when I was very clearly having a miscarriage, the D&E was presented to me as an option, not the next step. And I live in the South - so maybe we're not so backward after all!
I also want to say there's no way OBs should be presenting these tests as par-for-the-course. My midwife, here in Ontario, Canada, presents it as a choice and was very upfront about the fact that you can't get much in terms of definitive results without an amnio. Like others here, I've had two miscarriages, and the thought of having another as a result of an amnio...prompted by a screening test showing my chances of my baby having a genetic defect were not much more than the chances miscarrying-by-amnio, meant that we said no to the screening.
My midwife also said she's had patients who've tested totally negative in the screening and then had babies with Down's.
It seems like a shell game to me.
You can refuse the test. It is called the triple test and it is only 50% accurate. Unless you know the exact day you conceived you will ge ta false positive and then have to get a fetal survey to confirm the results. Every nurse I know says "Don;t do it".
BTW....i was on 8A the other day thinking about you and wondering if I would get the chance to see your adorable daughter in person!
Dutch,
In regard to the ethics of how the medical community approaches this whole tact; I want to add that when we had that "scare" during our first pregnancy a large part of the reason it was a "scare" had to do with the way in which the news was delivered, I'm going to post on my blog about what happened rather then take up more of your bandwidth here. For us, the comments by yourself and Megan hit such a nerve I can't begin to describe. (But I'll try over at mommyspeak) The thing was that once we got more information about what we were dealing with it turned out (regardless of the outcome) to be much less tramatic then the delivery of the news itself. There needs to be some kind of training or individual (genetic councilor (sp?) to discuss these things BEFORE the tests are even offered. Too often if this information is given at all it is well after the fact. Lack of information (I think) is the scarest part of it all. If you can stomach more on this feel free to come over to my house (site) and hear our story.
I'm glad you opened this discussion up (even if you didn't realize what you were doing) and I don't think you're a douche.
dutch and wood, i'm sorry that this post seems to have stirred up stuff that you never intended. when i read the post originally i did see it as your personal wrestling with the ethics of pre-natal screening in the context of a future "super race" of people who are genetically "perfect" (whatever that would mean).
however, with very few exceptions, i've read the comments, and have been impressed by the way people have shared their own experiences and feelings about the wide range of implications these tests will have. so in that sense, i'm glad you've had the courage to leave the comments open and let people discuss the topic, wherever it goes. even when idiots like me write without editing for emotion.
i'm so sad that more people don't have better ob/gyns, women and men that value their patient's intelligence and look at the dr/patient relationship as that of a partnership. i think that one of our responsibilities as patients is to demand excellence from our teammate physicians, and if that level of excellence is refused, we move on. in this day and age and in this country there is absolutely no excuse for the type of bullying and steamrolling that i've been reading about up in the comments. it's too bad that some ob's don't get the training they deserve to deal with these situations, but honestly? i find that nearly inexcusable on their end. shame on any professional who doesn't strive for excellence in every area, especially one like that.
we are so blessed to have an ob that we also consider a friend- she always takes as much time as we need to discuss every test and procedure and possible outcome, and certainly has never pressured us to do anything we didn't feel comfortable with, and we trust her judgment and knowledge and experience deeply. my hope is that all parents find a doctor like ours.
***
and, omg, i can't wait for your post next week on DWTS. suriously.
because I feel like being controversial ... would a world without Down's really be so bad? Everyone seems to think it would be the end of life as we know it, but there are so many other abnormalities (and yes, it is one) that we have eliminated without a second thought and now consider the world to be a better place. If a child were born with four arms, I'm sure he would have plenty of light and love to spread around as well... but is it worth it considering his reduced quality of life? to me, saying that a kid with Down's is totally happy, the perfect child with the perfect life, is more naive than saying disabled people were put on this planet for our enlightenment. Yes, they are great kids. Yes, they are making the best of it. But if they could have chosen, do you really think they would have chosen a lifetime disability that precludes them from ever fitting in with their peer group? It's important to appreciate your kids for who and what they are... of course it is. But if Down's could be eradicated, I really don't think the world would be worse for it. ** Please note that I am not talking about a nationwide abortion spree. I'm not talking about getting rid of your kids. I'm talking about getting rid of the disease. It seems that some people are mixing up the disease with the kid, and thinking that they are such a great kid/ have so much love/ enlighten the world because they have Down's. And to me, that's really pretty much the same as reducing a person to their disability.
by the ease it gives two vulnerable people to end a life
Wow, you know, from the first sentence of this post, when you talked about watching "the child" squirm, I was totally taken aback. Are you pro-life? Because if you're not, you might want to watch your rhetoric about what is a child and what is a life - words matter, as I'm sure you know, given your profession. And if you are pro-life, wow, have I ever misjudged your politics.
Dutch,
I'm so sorry people are assholes. The post was written beautifully... and I agree with your thoughts and comments. I hope you don't let the negative readers get you down.
There's always someone out there who has to ruin a good thing.
I found this article some time ago while doing research, & I saved it. I find it to be quite sad.
Judge Orders Doctor To Pay Parents Over Daughter's Birth
By Dave Reynolds, Inclusion Daily Express
January 31, 2003
VANCOUVER, BRITISH COLUMBIA--A Supreme Court justice ruled this week that a physician must pay a divorced couple $325,000 ($214,00 US) for the "distress and expense" of giving birth to a child with Down syndrome.
Justice Michael Catliff determined that Dr. Ken Kan was negligent when he did not order an amniocentesis test for Lui-Ling "Lydia" Zhang, of Vancouver, which likely would have found that her unborn daughter, Sherry, had Down syndrome. Zhang has said that she would have aborted her pregnancy had she known that before the baby was born in April 1997.
Dr. Kan was ordered to pay $10,000 in damages to Zhang and $315,000 in damages and living costs to Simon Fung, the father with whom 5-year-old Sherry now lives in Los Angeles, California. Justice Catliff explained that the award would have been higher, but he cut the amount in half because the parents contributed to the situation themselves.
The attorney representing Zhang and Fung said his clients will likely appeal the decision and argue for a larger award.
During a 15-day trial in November, Zhang said that Fung could not accept that she had given birth to a child with a mental disability. Having Sherry "totally disrupted our plans," she explained. The couple's one-month-old marriage then began to fall apart, Zhang said.
Zhang has seen Sherry just eight times in the last five years.
Hi Dutch,
I hope you'll check out my friend Melissa's blog, Banana Migraine, at http://bananamigraine.blogspot.com. She is also taking part in Tricia's "Get it Down: 31 for 21" blog project, has a wonderful site, and just happens to have an amazing daughter with Down Syndrome. If you visit Banana Migraine, look just below the picture of her daughter on the left, and you'll notice a "Designer Genes Link." There are many, many links to families who are blogging about Down Syndrome.
Thanks for asking for links to folks who are blogging and raising awareness about DS!
From what I gathered from your posts, it sounds like you and Wood are having a baby around the same time that my husband and I are. We're having a boy, too! We opted out of the nuchal translucency scan that you mentioned because we figured that it really wouldn't have changed anything for us. But then we had the Quad Screen. Go figure. Best of luck to you guys!
Karen
Saying "I didn't test because I would never terminate" is very implictly judgmental of those of us doing the testing. It implies that we tested because we would.
As far as the early nature of the testing, I just looked at that as one more bar to clear, that maybe I would have 28 weeks to read up and prepare (and scream and cry and ask God why me, let's not pretend I am a calmly accepting person here) instead of 20 or fewer. And honestly, had we found ourselves in a postion where we chose to terminate, there are sure as hell people in my life who I would be glad never knew I was pregnant and never would have the chance to judge what I did. I would be grateful for that chance, to keep it a matter within my inner trusted circle and not something for public consumption. Someone's private disaster should not be used as someone else's political football or hot gossip.
I just think it's so, well, smug to willingly stick your head in the sand and do no testing at all and claim the moral high ground for doing so. Ignorance may be bliss, but it's still ignorance. As usual, I was 100 percent in agreement with pnutsmama's post. If something was wrong with either of my much-wanted children, I would want to know as soon as I could so I could educate myself and my family, gather support and see what changes we might need to make and especially make sure the interventions needed were lined up as early as possible. I don't think I would terminate the pregnancy, but as so many people have pointed out so eloquently, you cannot know until you are faced with that decision.
Your post, Dutch, and many of the commenters seem to look at this issue as an either/or; that you will have the testing and terminate if something goes wrong, perhaps even having the testing with that sole intent, or you won't because you are sure you wouldn't terminate. I had the tests because I am the kind of person who Needs to Know. There is so much you can't know when bringing another child into the world, from what it will look like to a whole host of things that can come up and knock the wind out of you, both before and well after they are born. Having good test results just means that of the thousands of things I can worry about, here are a few I can let go.
We had the same test you did, and for the life of me I can't remember feeling pressured to have it (and I am 37, well into the high risk category). I am stubborn as hell and a total ultrasound whore, so of course I was going to jump at the chance to get a peek at the baby but would have had no problem saying no had that not been the case.
mfk, I think that something you're forgetting is that quality of life is impacted in a large way, by those surrounding that life. Society as a whole. I'll seriously be damned if someone like me should be "rid" of, because it would make the whole thing a little less awkward.
I hadn't planned on commenting. I wrote Dutch privately, but as someone born with and living with a genetic mutation that is now screen-able and no doubt, I have 50/50 or 75/25 percent chances of passing it on to any future offspring, I find your comment to be more than purposefully controversial, or devil's advocate, whatever. I find it to be a comment that is strangely in favor (and again, this is my opinion after reading of it) of making it easier for society, rather than the "disease" or disability. How is the world better for eradicating differences? DS and any other genetic or chromosome deformity is not Juvenile diabetes or Polio. No doubt, it's frightening, it's unknown to the majority of society who have never lived with, loved or dealt with such a thing in their personal spheres -- even as a woman who has lived with this my whole life, I have no idea how I'D react if my pregnancy had DS results or any other (including my own) disability. I haven't been there yet. But it is not a spreading nightmare, something parents cannot survive, something the person directly affected cannot survive and live a thriving life. Function is a large part of that. To strip someone capable of, even if in a different way than 'normal', function or to deny them credit for doing so in a world that is not at all welcoming, understanding or fearless when it comes to dealing with differences (gross stereotype, generalization, boom)is crazy.
So, the world after eradication of DS and other similar conditions. Would it be bad? No. Would it be easier? Totally. Anything unusual is not easy. But it would not be perfect, and it would not be better, it would simply be easier for those uncomfortable in the first place.
dutch - i think you've spawned some great discussion and i feel like the vast majority of these comments are to relate individual experience, not to condemn you guys as parents. people will read what they want into word choice. if anything, people are focusing on the experience (and not the ethics) because your rendition of your own experience comes across so vividly, putting us in your place. it invites one to imagine.
i think perez has the market cornered on television updates. we appreciate that you keep us thinking.
i absolutely love this blog and was fascinated to read this post by Dutch. and Dutch? please keep writing about controversial subjects, you have a way of presenting them in such an informative manner.
from the time i was a small fry, my parents taught me that it was totally up to me as to what i did with my body. when my parents divorced, my mother ended up moving down the street from a women's health clinic that, as one of their services, provided abortions. i had to walk past the protesters at least once a week to get to school and can vividly remember seeing the photos that they bring along with them to frighten people with. i can remember thinking as i was growing up that for me? i'd never be able to have an abortion for any reason. however, i'd always support 100% the ability for any other woman to choose what she did with her body.
just over three years ago, i learned i was pregnant. as a young, healthy woman, i thought i was free and clear of any possibility of any sort of difference in my pregnancy. unfortunately, when the first ultrasound was performed, it showed a multitude of problems resulting the impossibility of my child ever living outside of my womb. given the information, i chose to terminate.
was it a difficult decision? not in the way i would have suspected a decision such as it would be. i didn't struggle with decision to terminate because given the science and unfortunate facts surrounding my own pregnancy, the child was going to die either by termination, or during or directly after birth. what i struggled with most was reconciling my old belief of choosing to never terminate and realising that i had now faced a decision that i'd never thought would be one i'd be forced to make and seeing that i had, indeed, made a different choice than i'd ever anticipated.
knowing what i do now, i know that no one will know exactly what decision they'll make until they're looking down the barrel of whatever choice they have to make.
and who the hell knows what i'll do in the future? i sure don't. that's a decision i suppose i'll make when i get to it, and hopefully it won't be a decision - whatever it happens to be - i make, but one i make with a fully supportive partner.
wishing you and Wood all the best.
www.washingtonpost.com/wp-dyn/content/article/
2007/03/30/AR2007033001835.html -
Article written about a friend of mine's son & daughter in laws experience with the birth of their daughter Adara. I have learned that when someone tells you they have a child with Down's you never say 'I'm Sorry'.
I'm currently 26 weeks pregnant with my second child and at 16 weeks, I got a call from my doctor's office that my baby had shown evidence of Down's. Turned out the doctor's office had my gestation wrong by nine days and it was enough to skew a test, but my baby is (so far) showing all signs of being "normal" at this point.
The doctor's office was understanding and patient, not mentioning once the "decision" they possibly assumed I would be facing.
My father-in-law, however, not only assumed we would even consider such a decision, but that we would choose to terminate. I was livid, especially given that the tone he had conveyed the impression to me that should our baby have Down's Syndrome, we should abort because HE wouldn't want to learn the ins and outs of required care for a special needs child. Just because he couldn't imagine how to care for a child with special needs certainly doesn't mean that WE as parents couldn't figure out how to handle it and be happy.
It has completely warped how I see my father-in-law now and I don't know that my impression of him can ever be repaired with that one comment he made. And it is enlightning to me to know that there are others who would find a special needs child, while maybe challenging to care for, a delight to know and be touched by.
Beautifully written Dutch. I find the topic at hand so heartbreakingly confusing that I can hardly think straight when pondering my future pregnancy, but you've written very deeply about it.
I'm guessing by the next post in line that there was some kind of flame-wars here in the comments, so I'm choosing not to read them and spoil such a lovely post.
While I don't have a blog to suggest to you, I do have a book I read a few years back called "Expecting Adam" by Martha Beck. She writes about her pregnancy with a DS child while attending Harvard graduate school in the late eighties and the truly amazing events surrounding it. I highly reccommend it. (And if you can't trust the taste of an internet stranger in this crazy mixed up world who can you trust?)
Thank you for your thought-provoking post. I appreciate being made to think! Best wishes on your pregnancy.
I can't stand most pop culture/tv blogs. Not because the people aren't awesome and because they're not well written. I just think... it's TV! Tell me about YOU! You are more interesting to me than TV.
But now I sound like a lifecoach or something equally annoying. So I will just say this:
You're awesome. Keep shaking it up. Stick around and write brilliantly. I'm proud of you.
My perspective on screening is that your idea what makes sense shifts a lot once you've been unlucky, and people with healthy pregnancies and kids (including DS kids) who shrug off screening as inappropriate or invasive technology are extrapolating that everyone else will be so lucky. I found out that I carry an X-linked chromosomal disorder that can't be screened for during my second pregnancy, which also has a lot to do with my miscarriages. I'm forthright about the fact that we would gender select future pregnancies if we could qualify for Microsort (my husband doesn't have the sperm count), because it's tough enough being in my situation with only a few symptoms, but people act like this desire is hopelessly immoral. And I always want to say, You don't know. You don't know what it's like to cry almost every night of your pregnancy in fear that you'll pass this on when you discover it's a boy. I would give almost anything to know. It has nothing to do with whether or not I would abort (I think I wouldn't, but how would I know?) With my son we got lucky. I find the idea of turning down more knowledge about our situation simply inconceivable.
Wow, what a great post. I had just blogged about this at length over the last week or so.
I read a fair chunk of the replies you received and I don't know where to begin, but with an ending. Many people may ruminate prenatal testing philosophically until they are in the clutches of their medical professional. Those kindred souls have a way of getting expectant parents pooping razorblades. I, myself had heard lots of stories about the terrible way doctors advise their patients in these matters. (I did not test other than have an ultrasound, which was normal). My own awful experience afterward, enlightened me on just how serious this situation had become. My son with DS is 3. We have just moved to a new city and I was bringing him in to meet a doctor at the children's hospital for the first time. It was mainly for a recheck of what had been an infected ear. Before the doctor examined him she notified me that she was also a geneticist and she then launched into an "odds of DS occurring in preganancy" speech that ended with "so you come to me the moment you find out your pregnant and we will arrange the testing and then we can discuss options." I need to note that I gave no indication I was ever going to have another baby. Can you imagine someone saying that to me while my beautiful son sat on my lap? It's one thing to use all the scary language to expectant parents, it's quite another to use it on someone parenting a child with DS. That ended my relationship with her office right there and I am in the process of writing a letter to the board of directors of the hospital. I'd like to caution all parents who have decided to "not test" to hold their ground when in the doctor's office. Those "professionals" can be sadly unprofessional when infringing on your rights to say "no".
This pregnancy is much grosser than the last one, but one saving grace (besides, y'know, a new baby) has been reading your pregnancy posts as we go along.
We just had the screening ultrasound a few weeks back, and honestly, didn't really even know what we were going in for. We're big fans of ultrasounds for the amazingness of real-time confirmation that there is a KID in there!, but we weren't told before going that this was specifically for genetic fact-finding. The ultrasound specialist OBs are in a completely different building of the hospital campus we use, and they wanted to know how in-depth we wanted to go. Did we want the blood-draw + ultrasound + subsequent ultrasound when the labs are back? They did the nuchal fold thing, without really confirming we wanted any of that, which in the end turned out to be fine so far.
After that appointment, I realized I felt a certain discomfort something like you were describing in this post. We are all for state-of-the-art everything, but as far as I can tell, testing at this early stage of the game (16 weeks) is for one thing only: so the doc can say there's a problem, and it's easiest to "deal with it" now.
I strongly disagree with the commenter waaaay near the beginning who was pissed that a woman could ever say she wouldn't terminate. I realize I may be in a minority here (believing one of those pesky miraculous birth myths in this day and age...) but even if I weren't a Christian I would not consider aborting a child before delivery for any of the things they screened me for the other day. If that makes her feel judged, I think that's between her and her... self.
I believe that a testament to good writing is the range of reactions and interpretations it brings to the readers.
Dutch, what I took from your post was a heartfelt and legitimate concern for what you saw as a rush to test for genetic differences, tests that could be wrong, or misread.
Last year, a friend at school received a call from her ob that her recently taken tests 'didn't look good.' She left the building in tears. After a week of further tests and second opinions, it turned out that all was well and she delivered another beautiful boy. If she had followed the first doctor's prognosis...
I did not read your post and think that you were advocating one position or another, just sharing your experiences as your family grows. I also believe that you are right to question to what end all these tests could lead and that you are not maligning anyone's choices.
Thank you, as always, for writing.
Dutch
I was sitting here holding a feeding tube for my baby who was born with a rare genetic disorder when I started to read this post.
I had to come back and read through the comments, thought I am regretting it somewhat now. I think pretty much every aspect of this issue has been hit upon here. For each of us this is a different decision. My daughter had a high NT at 12 weeks so I had a CVS because I would have terminated if she had a trisomy that would have been terminal. Downs would have been a difficult call for me for the reason some have pointed out that no one thinks adults with Downs are so cute. I have an uncle with Down Syndrome and I thought I never wanted a baby with Downs but when it was my own I felt differently. I've thought a lot about whether I would have done something differently had my daughter's condition been detected and the fact is I don't know.
From my experience I can only agree wholeheartedly that what you write here is true - as a society we have hardly come any further even though the timing and technology have changed.
Here is a blog of a mom with 4 DS sons. One is natural born and 3 are adopted.
http://mommylife.net/
She also has a wonderful album full of families with DS children.
http://picasaweb.google.com/
Barb...key=FkN3NRQpYFY
I was 36 and 38 during my pregnancies and I refused all genetic testing.
stutefish, you're a douche. this has nothing to do with dutch's politics. if i may be so presumptious as to speak to his politics...
of course to him it's a child. this is a wanted pregnancy that he's excited about, looking forward to, etc. of course, to him, it's a child in wood's womb. i am as militantly pro-choice as they come, but from the moment i found out i was pregnant w/ both my children, they were children to me. and if something were to go wrong, or if i had to terminate for some reason, i would grieve as if i lost a child.
but i stand by my right to terminate for whatever reason, and I stand by the right of any other woman to terminate an unwanted pregnancy.
When the hell can people write an opinion without having to preface with a bunch of PC bullshit? Ever, anymore? Sorry, but my gawd.
Suki - "I don't think I have any right to make those decisions or to pass moral judgement [sic] on them and I don't think you have any right to do those things to me either." People don't unless you allow it. Everyone has the right to state an opinion (not all opinions are "moral judgments") without regards to anyone else. That's the beauty of free speech and thank God for that because expression would be worthless otherwise.
PS I worked in Windsor Ont for a year and was fascinated by Detroit. Your description of the downtown as being post-apocalyptic is bang on.
I will never forget driving to the DIA for the first time in my life. The images of the beautiful boarded up houses will always stay in my mind.
and p.s. miriam - really? there's no reason you can think of terminating? even if you knew the child to be born would be in enormous pain and only live for hours? even if you knew it would make your delivery life-threatening to you, or would make you lose your reproductive organs and prevent you from having any more kids? with a certain outcome of losing this current child as well? come on!
This is a really interesting (and loaded!) topic for me. I am in my 18th week with my second child. I am also of "advanced maternal age" (I'll be 41 when I deliver), and so get prodded by the doctors to get all the genetic testing they can throw at me.
Baby #1. I got the initial blood screening, and came up "positive" for having a DS child. ("Positive" ended up meaning a 2 or 3% chance.) Worried OB suggesting I have cvs testing to confirm/rule out asap -- did I have time the next few days? Our reaction -- not particularly worried. We were mostly relieved that we were not positive for Trisomy 18, one of the nasty genetic defects referred to by a previous poster. As for the cvs testing, we figured the chances of losing the baby in the cvs procedure was higher than having a DS child, so refused. But had the amnio a few weeks later, because we wanted to know. Baby is 16 months old with no DS.
Baby #2. We thought we'd do the same screening as the first baby. Initial screen "negative" for DS (1:590), but "positive" for Trisomy 18. Unlike DS, Trisomy 18 defects really aren't compatible with life and the survival rate is incredibly low, decreasing significantly as the baby gets older. About half die in utero. Most of those who are born do not survive much longer. Many physical defects. While the "positive" result was still less than a 2% chance, we were more concerned about the type of potential defect. Still no cvs, but we scheduled an ultrasound followed by an amnio. With Baby #2, an ultrasound did not show the tell-tale signs of a Trisomy 18 baby (brain cysts, heart problems, clenched fists, and rocking chair feet), so we decided not to have the amnio.
I can't honestly say what we would have done if Baby #1 had turned out to have DS. I don't know if I would have had it in me to abort. But the Trisomy 18 possibility with Baby #2 was a whole different story. Given what the baby would have gone through (if it had survived until and past delivery), that one scared me.
So, basically, although the context of Dutch's post is about DS, genetic testing these days is not confined to DS, but screens for other genetic defects such as Trisomy 18 and Trisomy 13 that are not compatible with survival and entail some major physical defects. And, for me at least, DS was the least of my worries when I was considering the type of genetic testing I was going to have and whether to have it at all.
anna, really, there are some people who would never, ever terminate. under any circumstance.
i'm not sure if anyone has mentioned this blog yet http://conorbootheandgirls.blogspot.com/
but this family recently gave birth to, and buried, a daughter born with trisomy 18. and yes, they knew what their daughter was going to be born with.
Please don't stop writing about controversial topics. This debate about a meaningful topic is such a nice change from reading about shopping and Britney Spears.
See, this whole "hard for me to say no to the OB" thing is so incredibly dangerous... Been there, done that, opted out of it completely the 2nd time around --> home birth. I know not everyone's ready for that, shoot, we specifically chose not to birth at home the first time around. But the 2nd time around? Smartest choice we could have made. My babe wasn't interested in coming out until 43 weeks and 3 days, and any OB would have been pumping me full of cervidil or pitocin *definitely* at week 42 if not earlier, but I avoided that crap too because I had an experienced midwife who trusts birth, who "gets it" when it comes to the whole excessive, fear-inducing, stress-causing battery of tests (oooh, love that ridiculous GD fasting test - that's another winner!) that most OBs live and die by. I also wince every time I hear a mom or dad say, "My OB did *let me* decline that test..." HUH? "Let" you??? No - YOU are the patient, it's your care so you get to decide, AND you are the PAYING CUSTOMER. You are entitled to choose exactly what you want for your healthcare regardless of what the OB tries to cajole you into. Ugh... sorry for the rant --> it's just hard for me to watch the same thing unfold over and over and OVER again for so many parents-to-be in so many OB offices all over this country. Take your power back!
Also, re: Downs and homebirth, I believ it's in Ina May's Guide to Childbirth - a story by a mom who gave birth to a beautiful boy that ended up having Down's Syndrome, and she was so grateful to NOT have had him labelled as she pushed him out, and all throughout pregnancy and birth. She appreciated him in the most pure, unadulterated way, as her BABY with no diagnoses or syndromes. I found that very compelling!
And to end, I absolutely know that there's no "one-size fits all" way to birth or parent. So no, I'm not advocating that everyone homebirth. But I'm also not advocating the [currently popular] OVER-use of OBs and interventionist hospital birth methods (even the most unmedicated of births is more interventive in hospital than at home - again, been there, done that w/ my 1st).
kimblahg, i am sure there are. and i can vehemently disagree with those people, but it's their choice. but as many posters have expressed much more eloquently than i did, you don't know that until you personally are in that situation. miriam, fortunately, is not, so i dont think she can make that statement
Excellent post!
I write about my son who has a rare bone/endocrine disease (and other stuff) at http://charmingbb.blogspot.com/.
Thank you for a beautifully written post. I got here through Asha's link over at ParentHacks and will read more... assuming, of course, you don't give up on writing about things that are challenging and really matter because they provoke strong responses.
It's unfortunate that readers take offense to this post. I thought it was well written and well thought out. Each of us is entitled to our own opinion on the subject, you were simply putting yours out there for the world to read. I applaud you for your honesty. Obviously there are pros and cons to having a DS child, and I guess it would depend on how the family responds to the child being brought into their lives. Kind of a "make or break" situation.
Anyway, I feel bad for you that so many have attacked you for this post. It's sad that people can't respect you for your opinion on the subject. You didn't say that people that terminate their DS babies are horrible and evil.
In a similar vein, I am a Christian, and you are not, but that doesn't mean I think you are a terrible father or useless human being. Your children will surely grow up to be tolerant, educated, grounded adults, and isn't that what this world needs more of?! I guess the point to this rambling comment is: easily offended readers, GET OFF DUTCH'S BACK. If you disagree, go get your own damn blog
Oh, and you're not a douchebag. Please, keep up the controversial posts.
Dutch -- I truly hope you do not stop writing interesting and thought provoking posts. Your perspective and willingness to admit what you don't know (or when you put your foot in your mouth) is refreshing. We have friends who have struggled with this issue -- no need to repeat it here -- and I believe the conversation is important and necessary. Anyway, excellent writing as usual -- thank you.
I was told that my son has DS by my husband. He was the only one who came back into the delevery room after my son was taken to the NICU. It was the best and worst moment of my life. I would not have wanted to hear the news from a Dr. who doesnt know me, or who would not be there on that journy with me.
I am beginning to think I have the weirdest OB on Earth, or that my part of the Midwest is different... I certainly think there are situations in which I would terminate, even a wanted pregnancy, if tests or u/s should significant problems. On my last pregnancy (#3) I actually asked my new OB what she did about terminations. Ans she doesn't ever do them. Her clinic doesn't do them. The hospital she practices at never does them. (it's not even Catholic like the other local hospitals so I assumed they wouldn't).
But she does offer tests. All the tests. And so I found Dutch's post interesting. I am curious if the chips were down and bad news were delivered if it was all just an FYI.
I miscarried that pregnancy and the hospital was fabulous for my care during the D&C. It bothered me that they would have refused me if I were terminating over something serious and deadly.
Dutch, I'm howling at your street urchin post. Hilarious. And this kind of response to a post? That only means incredibly provocative writing. So glad you didn't close down comments. I'm astounding by how thoughtful and intelligent and moving this discussion has been. Thanks.
Hi Anna-
I am glad you're free to be pro-choice. It sounds like you know you'd like to have certain options in certain situations. It's a little ironic, though, that my statement about my own opinions along those lines is met with incredulous questioning- would you be more comfortable as long as my "choice" matched yours? I believe we fundamentally do differ on this subject, and it is possible that I would not ever make that particular choice. I'm not saying I would be all christian-science or anything, but there are some interventions I don't believe align with my own ethics.
Also, my main thought was about the testing that happens so early in gestation. This screening-testing finds none of the horror situations in which you mentioned me changing my mind (loss of my life, organs, hideous pain for baby, etc.). It's wonderful that we have tools with which to prepare and learn about what's going on in there, I just personally am uncomfortable with being given diagnoses on that basis alone. And that certainly does happen.
Many of these tests are new- the whole science of genetic screening with the intent to "weed out" is itself new- and not all OBs couch the results that way when they counsel patients.
Dutch- I have never commented on a topic like this on the internet. It's refreshing to find a group of readers who are able to converse without getting zealous, and I really appreciate that your tone in your own writing is what makes that happen. Congrats on the healthy pregnancy, cheers!
Dutch - I often lurk, but never comment. I loved this post (& I haven't read the other 150 something comments either. Clearly a nerve has been touched!)
I loved this comment, because this is how I felt. In my first pregnancy, my AFP came back with a 1 in 30 chance of Down Syndrome. I had an amnio right away & the all but said assumption of every one in my OB's office was that I should terminate if the baby was genetically abnormal. I was deeply, deeply offended.
I was offended, not because I would judge anyone else for making that choice, but because no one ASKED me before assuming. And who knows, maybe terminating would have been an option for me before the infertility diagnosis and before I had a nephew with Down Syndrome.
We only went through with the amnio because my nephew had some scary medical complications because of his down syndrome and had to be air lifted to another hospital within an hour after birth. We wanted to be prepared. We also wanted out family to be prepared and to get over our own inevitable and human disappointment, if there was any, ahead of time.
I've seen what Sean has to offer this world, already in 4 years, and it's amazing. His parents, his siblings, his caregivers, his teachers, his cousins, his family. We've all been touched by our special little boy. I can't imagine a world without him.
I have a special needs daughter who is fifteen years old. She is my hard gift.
Great post.
Our son was diagnosed at 20 weeks in-utero with a severe CHD called Hypoplastic Left Heart Syndrome. There was also a risk that he had DS. Further testing proved that it was just a heart condition, but had he had DS as well, we were told he would not survive the first of three open heart surgeries a child with HLHS needs. We were faced with the possibility of carrying a child to term who would simply live maybe a few days. You do NOT know what you would do until you are truly faced with the situation. You might think you know, but you just don't.
The genetics counselor told us she had never seen an amnio come back positive for DS and the parents opt to keep the baby. Every positive she had seen ended in termination. That blows my mind. We were treated as though our son had already been diagnosed - we were told of the difficulties of raising a DS child and were given information on ending the pregnancy. Of course, she was maybe 24 and very insensitive, so who knows.
Our son is doing wonderfully - knock on wood - running, climbing, doing everything a 19 month old should be doing... which makes me wonder about those parents who terminate upon an HLHS diagnosis. What are they potentially missing out on? What horrible, outdated information did their genetics counselor give them? But again - you have NO WAY of knowing what their situation is, NO WAY of knowing what you would do, until you are in it yourself.
Oh, oh, one more? Because I forgot that I meant to say this earlier, sorry!
If I didn't feel it was fair to my family or I didn't have the resources for a high needs child, my next thought would be of adoption, not termination. I'm kinda surprised nobody has mentioned that as an option. I understand it's a painfull and difficult option, and am in no way belittling the challenges of mothers making that decision, but it is one more option.
I didn't read the other comments (there are an awful lot of them), but you are not required to do the testing. I know this for sure, because I've declined all the tests this time around (after experiencing the distress of genetic screening, etc. after a slightly non-typical triple screen result with my first child, who is 100% "normal").
If your OB isn't okay with that, you might consider consulting a midwife (you can find more info at birthcenters.org, I think). I'm not saying there's anything wrong with doctors, just that if your doctor pushes you into testing that you don't want, it might be worth considering other options.
Good luck.
Dutch - I wouldn't worry about people seeming to read things into your post that aren't there - they're just using your thoughts as a springboard for a larger discussion. And it's a good discussion, as often happens here. So thanks for leaving the comments open, and don't even consider sanitizing your choice of topics.
The only thing that sometimes bothers me at SJ is that other (loyal) commenters feel driven to defend you to such an extent that they get a little nasty themselves against other commenters and are probably stifling the conversation. Guys - Dutch is a big boy. He can whip out the ninja moves and defend himself when he needs to, as we all know.
Last but not least, our first son has a genetic disorder that was undiagnosed before birth. It was identified by the heel stick. Receiving that information about our one-week-old from the idiot, rude, cold, ignorant clerk (not a medically trained person) who called me from her dumbass clerk desk at the University of Arizona was horrible. I wouldn't wish it on anyone. With our second we did every test available. We paid extra for the ones that were not covered by insurance - "cri-du-chat syndrome" and other scary sounding things. We wanted to know everything they could tell us. And we don't worry about "feeling judged" for that - we made our decision and we don't really give a shit what other people think about it. We all do our best and follow our own hearts and that's all we can do. I agree with the commenter way above who said that as a parenting community, we should all try to be kind with one another.
If you make it all the way down here, you can read about my kid with Sotos syndrome, a really rare overgrowth syndrome at http://getwhatyouget.blogspot.com.
miriam, i probably would be more comfortable if your choice matched mine; isn't that human nature? but that's just it, i want to have a choice. and i believe that you should have a choice. do you believe the same?
I said, "Hi Anna-
I am glad you're free to be pro-choice." and that's what I meant. I'm done commenting now because I don't want to be rude to Dutch.
I know many would like a choice to chose to be free of a child with health issues and many, like myself, welcome them with open arms.
I am the mother to 2 boys, each with their own dx. We struggle more with our 8yr old than our 7yr old. 16 surgeries later, we are getting ready to face yet another one so he can have a mouth/jaw that will be bigger and he can be rid of severely crooked teeth. I really don't want to do a 17th surgery since he is so high risk while sedated. Our local Childrens hospital is our 2nd home, sad to say, but my son is alive and happy. He has defied odds. We are in a genetic study to determine which gene causes VACTERLS. We are the control family and if we had chosen to let him go the night he was born, how could we help all the other families who travel our road?
You might want the choice to abort your baby, but you never asked that baby if he/she wanted to be born to you.
Our first son was perfect in every visible way, loving bright sweet caring and a very very talented musician in a musical family,possibly headed for great things, according to the school which gave him a full scholarship at age 12....
Shawn developed schizophrenia at about 15- no family history, although often it goes along with so-called genius- he died jumping off a parking garage at 18, in order that he might change the molecular structur of the Earth in some delusional way and create word peace....
This is the short version, and not meant to scare or anything- just to point how we harbour the illusion of control and there truly is none. Would we have had him had we known what was in store, and given that now, 15 years later,many hours of my Thanksgiving Day (in Canada) was spent in agonising tears- it is not always thus but it never really gets "better" how could there be such a thing? it was set off by reframing a picture of Shawn playing his cello at age 7 in a recital-it took me 10 months to bring myself to do this simple thing- to put the picture in a better frame someone gave me (lovingly-a cello student of mine) for Christmas. I do not know how you measure the value of a life, or of one lost. But I am unspeakably grateful to have had him, although at times like today I wonder how I am going to keep this up for another 30 years or so.
We terminated our first pregnancy at 20 weeks after DS and other health issues were confirmed.
There was no question about what we would do. That did not make it easy.
For more info...
http://www.aheartbreakingchoice.com/
Here's a blog, it's not in English, but a picture is worth... Szirka is a DS baby and her parents are just the best one can get.
http://szirkababa.blogspot.com/
We denied those tests with both our children. I didn't want to have that choice, even though I know what I would have done.
My daughter is two and a half, she has special needs. No one knew anything was wrong for the first 18 months of her life. Then we found out, she is deaf in one ear, she has brain lesions, some sort of episodes that are a variant of seizures and migraines from what we gather, developmental delays, feeding problems, sensory processing problems, and so on. Ask me if I'd do it again. Because I would, no doubt about it.
At birth, everyone thought she was "normal"...the point is you never really know what cards you'll be dealt, but if you play the game, you're taking a chance. It is worth the risk.
I was an early commenter on this post and now that the discussion has taken the turn it did I worry I also contributed sense you had that everything was way off subject from what you intended. I had only wanted to share my own experience not make universal statements or assumptions...I realize that reading a blog is a bit like being allowed into someone's living room and I apologize if I tracked in any mud.
This is my favorite post you have ever written. Beautiful and you're so right. No one can teach us more than those we "think" we don't want to know exist. Chromosome abnormalities do more than cause down-syndrome. I have a close friend with Philadelphia chromosome Leukemia that her sister also had and died from. Abnormalities that weren't known about at birth... Her other sister was born with downs. Trying to imagine one child with a genetic abnormality is very difficult. But three?
Anyway, this was beautiful. Really something. Also wanted to say: my thoughts are with Wood and her father and all of you. Lots of strength and love, Junipers.
I also want to commend you on your honesty. We should all be so lucky to have your insight and balls. (I just realized that this was a controversial post which I don't get but whatever.)
I hate that I haven't had time yet to read all the comments, but I want to.
First, my first son has Down syndrome and when I became pregnant with my second child I refused all test. That's just me for you. Ignorance is bliss, but I respect others that make the decision to have the tests.
I also keep a blog--www.rrmfreeman.blogspot.com
Dude, Dutch, chill. People aren't attacking you - they're sharing their opinions. Good blogs will generate good debates and discussions - and someone disagreeing with you isn't a personal attack. This was a good post and the comments were thought-provoking. If you think these are mean comments, don't ever go to dailykos or Gawker - those are mean commenters!
Vitriol? Serious? I mean, I had different thoughts at the ultrasounds...but thoughts, nonetheless: about the unquestioned penetrability of women's bodies; the ironic impreciseness of science; the pressure to "see" a child in all that shaking outline; the worry that I wouldn't, and that I wouldn't feel anything much if I did. All these thoughts were fleeting. And were an example of the ways in which in the course of ordinary life we ponder--sometimes in extreme agitation--the nature of our lives.
I started a new blog about life with my PDD-NOS son. He is on the autism spectrum. What Kate said? Its very true.
I found your blog through Karen's--I also blog about parenting a child with Down syndrome (among other things). Thanks for this thought-provoking discussion. It's disturbing how "de rigeur" this early screening is now, just a few months after the ACOG recommendation.
I have links to other parents whose children have Down syndrome or other special needs. I recommend all of them, but two in particular:
http://jennifergrafgroneberg.wor....wordpress.com/
http://www.vickiforman.com/
Dutch,
I love your blog. You would never write anything that would piss me off so much that I would ever stop reading. Write on dude, write on.
I used to be for screening, but now am not so sure...
Our first pregnancy was perfect in every way. The second was trouble (still is -- he's emptying the garbage can as a type this).
With the 2nd, I did the IPS (Integrated Pregnancy Screening), and was flagged for an amnio. They told me that I had a high risk of having a baby with DS while I was having my blood pressure checked. (Great timing. As a result, they put me on blood pressure meds, and I spent the next month trying unsuccessfully to peel myself off the sofa. Problem was, whenever I went to convince them, they would upset me, and the bp would go up).
Anyways, the testing.
I was traumatized at the thought of an amnio, and possibly losing a much-wanted healthy pregnancy. And it all happened so fast, we didn't have time to think it through. But the testing was pushed on us, and my family doctor in particular (who I normally adore), was pushing for termination in the case of ds.
In the waiting room, I picked up a newsmagazine to calm my nerves, and happened upon an article on DS, and how as a result of testing, 95% of DS fetuses are being aborted. It hit me like a ton of bricks.
The almost 3 weeks it took to get results were sheer torture. I was being pushed against the wall for a legal abortion (here in Canada), and so would have very little time to make a decision. I didn't think I could do it. I was able to feel the baby move, and wanted it so much. But this test was preventing me from bonding with the baby, and there seemed to be such a shadow cast over the whole thing...
After 2 1/2 weeks of agony, I couldn't function any more. The date they had promised the results had come and gone. My husband spent the day trying to track down the geneticist, and I spent the day in my pyjamas, waiting, barely able to breathe.
In the end, there was nothing wrong (except my blood pressure), and so we were put through this trial for nothing. The IPS test (with the ultrasound and 2 blood tests) has a very high false positive rate, which is one of its problems.
And it really brought it home for me that there is no point going through with the test if you have no intention on having an abortion if things are not "right".
It is one thing to have a baby with hydrocephalus or neural tube defect (which they usually catch through ultrasound anyway), but soemthign else entirely to have a baby with DS.
I didn't know my son would be born with Down Syndrome, his twin sister inadvertantly kept this to herself, even during all the tests they could safely do to a 32 year old pregnant with twins.
I will admit though, that while pregnant with the third minion, I did have a CVS done because I was certain my marriage was failing and I somehow knew Minion 1 with DS was all I could handle.
It is a very personal choice. However I do not believe OB's should ever suggest aborting a fetus simply because it carries an extra chromosome (or whatever).
I also do not believe in sugar coating what it is to be a parent of a child with special needs. It's vomit making to hear people say (and they always do) that those kids with DS are always sooo happy. Ack.
Ok, love your blog. You can read my small attempt at Blogging, you know, because I have a child with DS..
www.mythreeminions.blogspot.com
It takes a certain kind of bravery to write a post like this. I didn't like reading it - and I never thought that I would say that about a post of yours or wood's, ever - not because it was offensive or too controversial, but because it touched a nerve.
I had the first 'late maternal age slash should you do tests?' discussion with my doctor today. Last pregnancy, even with the knowledge of fatal genetic disorders running through my close family and other scaries running through my husband's, I refused genetic testing (save for the tests prior to pregnancy to determine whether I myself carried certain terminal genes). I said no, no way, and never thought twice.
Today, in my doctor's office, I thought twice. I don't even know why, but I thought twice. I said, I don't know. And now I'm sitting here bawling like a baby because I don't know, because it's not the same as last time, because this time I'm scared. Of what, I don't know. But I am.
For all that, though, I still read this, to the end, and every comment, and don't regret it.
Dutch/Wood
I realize I'm late on this one & I have not read any other comments yet.
But I wanted to share the fact that, when pregnant with our first - a son, that my triple screen came back with a red flag for Downs or Spina Bifida.
At the time I was carrying him, I was in my almost mid-20's & thought this to be so odd.
After doing some research, I found out that:
a) you have to be exactly 16 weeks or whatever when they do this test, so there is a high instance of false-positives, which the docs do not tell you about
and
2) this is very, very common in women who carry boys.
My b-i-l & s-i-l had a very similar situation with this triple screen coming back positive for Downs with their child, they were in their late 20's. They went through the second tier of testing and all was well. And they found out they were having a boy.
You may already know this information already.
I just thought it may be helpful.
Best of luck and i enjoyed this thought provoking post. As i enjoy all of them.
OH. Lastly, when we got pregnant the second time, after being so horribly scared the first by this torture device of a test, I opted out of having a triple screen.
Dutch,
Ever considered writing a book?
Hey, Dutch. I know it's been almost a year, but some conversations I've been having lately led me to think about our exchange over this - which is gone from my email inbox, or I'd do this privately.
Then again, having been an asshole in public probably deserves a public apology.
I won't say I wasn't taken aback by your description of a 20-week-old fetus as a child, because that part was true, but my timing and the way I chose to express it (or even that I chose to express it at all) was very poorly done. Your experience is your experience, and you have every right to describe it in whatever words you feel are appropriate. Dinging you over a political/rhetorical nitpick when you were already feeling under attack was unkind of me, and I am sorry.
I'm sure you're probably long over it, but I do try to apologize when I am wrong, even if it is too little too late.
Dutch,
I'm going through the first test next week for my second child and reading this made me feel normal. Thanks.
Shannon
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