He’s Not a Birth Defect.

I came across this article on the front page of MSN when I signed onto my laptop this afternoon: New Blood Test is Better At Finding Birth Defects, Study Finds.  The blood test isn’t really news anymore; it made its debut on the market a couple of years ago (I wrote about it here).  I guess what’s news is that now a study has been undertaken to determine just how accurate the new blood test is – and hot damn, it’s pretty accurate.  So, every pregnant woman in the US can now rest easy and know that she doesn’t have to give birth to a birth defect.

Well, actually, that’s not true.  Not until insurance companies can be convinced to routinely cover the cost of these blood tests, which apparently ranges from around $800 to $2,000 a pop.  And how will the companies that have developed these tests convince insurance companies to cover the cost?  By convincing insurance companies that it makes economic sense to cover the cost of the tests (you don’t really think your health insurance carrier gives a flying fudgesicle about your actual health, except to the extent that your actual health affects your insurance carrier’s bottom line, do you?).  And as much as the companies that have developed these tests tout them as providing “information” and “peace of mind,” the way they’re doing that is by helping expectant parents (and thus, insurance companies) weed out birth defects that could be potentially costly.

I wish I could read these articles with some emotional detachment, I really do.  Frankly, it’s no fun at all to read these things and feel the sharp slap of a reality check: people see my son as a birth defect – a preventable birth defect.  People don’t want to have a kid like mine.

A 29-year old woman is mentioned in the article and said to have been “ecstatic” when she underwent the new blood test and got the “great news” that her fetus was “healthy.”  Apparently, she tested specifically with Edwards syndrome (trisomy 18) in mind – I admit that it’s easy to understand the relief someone would experience at learning that their child-to-be did not, in fact, have a condition that is generally not compatible with life.  Why is Down syndrome (trisomy 21) grouped together with Edwards syndrome and Patau syndrome (trisomy 13) for purposes of these prenatal tests anyway?  Merely because they’re all trisomies and are detectable?  Because the fact is that Edwards syndrome and Patau syndrome are really in a different category, as they are generally not compatible with life, whereas Down syndrome is very compatible with life.

From the article:

Doctors say that advances like cfDNA simply provide more accurate information. “The first step is being able to reliably identify those pregnancies that are at risk for abnormalities,” says Dr. Michael Greene, Chief of Obstetrics at Massachusetts General Hospital. “What if anything the patient wants to do with the information is up to them.”IMG_3680

But see, that just isn’t true.  These tests do not “simply provide more accurate information.”  How that information is presented to expectant parents, how they are counseled by their medical care providers, right down to the language used – it all has a huge, huge impact on what patients will do with the information.  So, to imply that these tests and the medical community that advocates their use and administers them are merely providing a service to expectant parents – it’s just not true.  The whole situation is so loaded with biases and misinformation and dollar signs – the deck is so stacked against fetuses with Down syndrome, it’s just tragic.

Sometimes I feel so beaten down by how hard I have to fight just to get the world to see Finn as a person.  I know all the prenatal tests were not developed with Finn specifically in mind, and yet, how can I not take it personally?  Finn has Down syndrome.  These tests were developed and are utilized as a means to prevent kids like Finn – kids who are seen as defects.

As I was fuming after I read that article earlier today, it hit me that none of my other kids has to prove they are valuable human beings; I’ve never had to fight for any of my other kids to be given the same opportunities as their peers; I’ve never had to ask anyone to stop using derogatory language that targets my other kids; I don’t have to worry about anyone looking at any of my other kids and thinking to themselves, “Boy, am I glad I don’t have a kid like that”; and I don’t have to sit and stew over tests being developed to prevent future occurrences of kids like any of my kids except Finn.

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25 Responses to He’s Not a Birth Defect.

  1. Deborah Mitchell February 27, 2014 at 12:15 pm #

    And yet, we all have defects.

    Through your writing, you do a lot of educating. Great post, Lisa.

  2. Ruby McGill February 27, 2014 at 2:34 pm #

    I think for some people it is all to do with ‘fear’ – of the unknown. Give most people a chance to meet, interact with, and truly get to know a child with a disability – any disability – and you see a child of value, a child to be loved and treasured, for who they truly are. Many of these children have a wonderful sense of compassion; a sense of humour, an eagerness to connect with other people that make them stand out. Even those who do not have the gift of movement, of language, can speak with their eyes and express their love to those around them. Keep on advocating for Finn – he’s very precious.

  3. Kristen February 27, 2014 at 2:47 pm #

    Hi Lisa,

    I’m right there with you….reading your post and the attached article makes my stomach churn. Dillon is 3 1/2 and people view him as a defect. I can tell you for sure he is no defect – he is my son, the light of my life and a joy to our family. People in general are afraid of “disability” god forbid my child isn’t the “best, brightest, most beautiful.” Who cares what the “professionals” have to say? I say take it day by day, love my son for who he is and make sure he knows he is loved and cherished. I live in Massachusetts and we are lucky to have so many first class hospitals & research facilities. But in the end it comes down to family love and RESPECT. Treat my family with respect and love and you will get it back…..don’t and I can’t make you any promises.

    I recently lost a good close friend because she kept using the “R” word, I called her our on it and she had the gall to tell me my son wasn’t “retarded” with attitude no less. I told her she was perpetrating a negative stereotype and she told me that I was over reacting. I told her she didn’t know what she was talking about and should walk a day in Dillon’s shoes. She wanted to argue the point…..I got up and left the restaurant we were having dinner at and haven’t spoken to her since. RESPECT!!

    -Kristen

    • Lisa February 27, 2014 at 4:35 pm #

      Kristin, this reminds me of having dealt with Finn’s former OT – who is also a neighbor and is in the same book club I’m in – repeatedly throw around “retarded” as a slur, and then getting very defensive when I’ve called her out on it. Our relationship is very strained at this point, to say the least. And she WORKS with kids like Finn – that’s what she does for a living.

  4. Heidi Kestrel February 27, 2014 at 3:06 pm #

    I am fuming right along with you. In my opinion, there are so many other things that research and medicine could (and should) be doing with resources. Not to mention the ethical quagmire that tests like these dump people into. When I was pregnant with my 5 year old, I did not do any of the prenatal testing to see if there was anything “wrong” with my baby. We did have a level 2 ultrasound because of my “advanced maternal age). In the end, I gave birth to a perfectly imperfect child. And he’s grown into a beautiful perfectly imperfect little boy. His arteries around his heart are a little bit different than most peoples’. And he happens to have Autism. And, for me, for my family, to the people we call our community, he is exactly the way he should be. We don’t imagine him being not Autistic. He’s crazy creative and crazy smart. I learn from him every single day. I can’t imagine if there had been a test for Autism when I was pregnant with him and, had I taken the test and it indicated that he had Autism, I decided to “terminate”. . . No, he is my little boy. He is a gift from God (to me). He is precious. I wouldn’t have him any other way.

  5. Stephanie February 27, 2014 at 3:50 pm #

    I saw that article too and I just had tears streaming down my face as I was reading it. My thoughts were similar to yours, Lisa. In particular the words of your last paragraph are the real problem with society……..what we value and what and who we don’t.

  6. Extranjera February 27, 2014 at 4:10 pm #

    I am working on a post regarding these articles and how they subtly and not so subtly enforce, firstly, a hierarchy of disabilities, and secondly, use language to shape the reality around disabilities so that this language is acceptable and sometimes even considered ‘kind’ or ‘respectful’.

    It seems to me that the journalists writing these articles are under the impression that they’re providing “balanced” articles that take different “points of view” into consideration. Only, I think we’re forgetting that discussions of human worth aren’t about ‘opinions ‘ on whether who counts as human. This false sense of being “inclusive” (another example of how language shapes our world and thinking, when it’s described in these terms) which is, in reality, allowing for casuistry, is something that I see continuing unless we, as a community (yay, there’s that word again), can distance ourselves from the abortion debate that’s unfortunately so steeped in this two-sides-to-every-story fallacy that I’m not sure it can ever recover.

    All right. I’ll go now and write this on my own instead of thinking out my blog here 😀

    • Lisa February 27, 2014 at 4:36 pm #

      I’m very much looking forward to reading your post now!

  7. Kris February 27, 2014 at 4:28 pm #

    It’s interesting. I have a daughter with a chromosomal ‘defect’; detected during pregnancy. I’m also a pediatric nurse who works with many children born ‘normal’, who now have catastrophic brain and spinal cord injuries. Their parents didn’t have a test for that, didn’t plan to raise a child with a disability, certainly didn’t have dreams of such challenges for them. No one questions these children’s ‘personhood’, nor should they. Life is a fucking crapshoot; you get what you get, and sometimes, what you get changes when you least expect it.

    • Lisa February 27, 2014 at 4:38 pm #

      Yeah, that’s the thing, isn’t it? I think underneath it all, that is the big thing that gets to me – life is a fucking crapshoot. And these tests just sell some false sense of having control over life’s outcomes. People walk away from those tests feeling smug or relieved, or whatever, but the truth is, life can throw anything at anyone at any time.

  8. Nobody February 27, 2014 at 5:01 pm #

    You hit the nail on the head and yes incompatible with life is the crux. NOT TO RANK DISABILITIES but that’s the key for DS specifically to summarize my contention that yes the early start for many babies with Adams is tough but medical science has evolved and the conditions are manageable with proper knowledge. It’s not a diagnosis that is incompatible with life. And if one is then the infant gets it’s fighting chance to be the misdiagnosis or percentage that beats the odds. It’s not money — how can insurance companies bottom lines determine our ETHICS & MORALS???

    I’m sick sad and motivated as always to combat this information gap in the medical community first then insurance world apparently.

  9. Nobody February 27, 2014 at 5:02 pm #

    It’s nbc news!? You are f’ing kidding me. Tooooooo awful.

  10. Nobody February 27, 2014 at 5:21 pm #

    Be sure to post a link to extrahjera blog post Lisa! I’d love to remove my two sides to every story problem for that passionate issue particularly…

  11. Nobody February 27, 2014 at 5:26 pm #

    Okay that’s a bit odd. Dr Skotko the DS friendly doctor is quoted but with nothing to do with anything really DS related. It almost appears he is pro-testing but his main concern is updated information about DS bring provided to parents receiving this diagnosis.

    • Lisa February 27, 2014 at 7:40 pm #

      Yeah, I thought that about the quote from Dr. Skotko, too. But I know that articles can take things out of context, and twist the way things are presented. I suspect that Dr. S had more than that to say, but the editor chose only to include that short little blurb.

  12. Lisa February 27, 2014 at 10:25 pm #

    I agree the tests are a false sense of security. I remember having a cvs for my advanced maternal age. While I was waiting I had an ultrasound. It found that the baby or fetus had spinal cord defects, brain defects and a cleft palate. I remember three weeks later somebody called all happy to give me the news that the baby passed the genetic tests. That baby was born still. And yet it doesn’t end there . Another pregnancy ( my youngest who is alive !) I was told it looked like the baby had DS from a level II ultrasound. He does not have DS.
    People need to be wary of tests. Although it seems people are more concerned these days with gender than health anyway.

  13. Alyson Armstrong February 28, 2014 at 12:25 pm #

    Not long ago I would have said that blood tests similar to that should not even be an option. However last year my close friend Terra found herself pregnant again for the second time and had a blood test called Harmony done. through this test she found out that her baby had a high likelihood of having Trisomy 18. she went through with the amnio and it was indeed true that her daughter did in fact have Trisomy 18. Having that information I believe proved invaluable for her. she was able to have medical consultsahead of her daughters birth which enabled them to make decisions about what type of care they wanted her to receive immediately after birth. I remember her telling me that she was afraid in the heat of the moment she would have had massive medical intervention for her daughter had she not know her diagnosis before hand. instead they were able to have a truly beautiful birth and took her daughter home two days later and had an amazing 13 days with her full of peace love and family. She was able to pass away in her mother’s arms in her own home.
    Having said that I strongly believe that Down syndrome should not be grouped in the same category as a Trisomy that is fatal. It just seems so outdated and frankly wrong to keep referring to those with Down syndrome as having a birth defect

    *please forgive my typos As I am speak writing this as I get children ready for school

  14. Sheila February 28, 2014 at 1:48 pm #

    “have to prove they are valuable human beings”.. this is exactly how I feel and on my mind so often, especially given I’m headed to our first ever IEP for pre-k next week. Sigh. Simply because she has an extra chromosome, she is labeled, her worth has to be proven, we must scrutinize the shit out of everything she does or doesn’t do on a specific timeline, whether or not her peers can as well. They are granted the welcome mat, I have to fight for my child’s entrance. 🙁

  15. lclilienthal March 3, 2014 at 11:58 pm #

    Great post, Lisa – and all of these articles really bury the fact that the “tests” are actually “screening tests” — they are not definitive in terms of diagnosis. For a diagnosis, you still need an amnio.

    • Lisa March 4, 2014 at 12:51 am #

      Very true, Lis. I wonder, though, since these newer screenings are being marketed based on their accuracy, how many people just accept the results of these screenings as a diagnosis.

  16. Amy March 28, 2014 at 12:54 pm #

    Hi there, Found your blog today and I came across this post. I am a teacher, however my best friend has a brother with Down Syndrome and so I grew up very close to my best friend and of course her brother. He was a wonderful person to be around and had the most wonderful taste in music. Since then, as a teacher, I have worked with a few children with Down Syndrome and I think that they are wonderful human beings; they often have so much more to give than a child without Down syndrome and they can be so witty and honest and very, very loveable. They certainly don’t need to prove they are valuable human beings in my opinion.
    Your son Finn looks fabulous. I look forward to getting to know more about your family life!
    Amy x

    • Lisa March 28, 2014 at 4:25 pm #

      Thanks, Amy!

  17. Soren April 6, 2014 at 3:49 am #

    The issue is that even though you clearly have an emotional investment in your argument, t21 IS a birth defect. A typical human has 46 chromosomes and it is a big deal as it affects every cell in the body. We could discuss all day the way that society could adapt to anomalies, but at the heart of the issue is a deviation from the norm causes health issues that affect a child. My wife and I decided to terminate due to t21 and we are sad but have no regrets about it. It would be dishonest and wrong to state that t21 is not a defect. I think by accepting this, it would bring you a bit of peace. For the record, I have an immediate family member with DS and am familiar with advocacy, early intervention and resources. We made our choice fully informed, without bias on being pushed to terminate or bias as you’ve shown, which is not to consider an extra chromosome a defect. Both sides seem quite taken with their own righteousness.

    • Lisa April 6, 2014 at 4:34 am #

      Why in the world would you think that my accepting that Down syndrome is a “defect” would bring me peace?

      The medical definition of “defect” according to Merriam Webster is “a lack or deficiency of something necessary for adequacy in form or function.” that’s pretty vague, if you ask me. And T21 isn’t a deficiency, it’s actually an excess. But perhaps that’s only semantics. Is T21 a deviation from the “norm”? Yes. I don’t think that makes it inherently a “defect.” The term “defect” is negative in and of itself, and so it is intrinsically biased. Does that extra chromosome in every cell of the body present higher risks of certain health issues? Yes. But risk certainly isn’t a guarantee. There are plenty of people with Down syndrome who are perfectly healthy (like my Finn), and the vast majority of health issues commonly associated with Down syndrome are extremely treatable – to the point that they involve pretty routine procedures. Also, every single health issue associated with Down syndrome can also be found in legions of people around the world who do NOT have Down syndrome. Being black presents a higher than average risk of sickle cell anemia. Would you call being black a birth defect? Being Jewish presents a higher than average risk of tay-sachs (which is not compatible with life). Would you call being Jewish a birth defect? Further, you can rule out Down syndrome with a prenatal test, but there are scores and scores of other “issues” (“defects” if you like) that a baby could still be born with or develop at any point after birth. There are no guarantees in life. Down syndrome is a defect because the masses have decided it’s a defect – that’s all. I think I might find peace if people saw my son as a human being, as a unique and valuable person, and not as a defect.

      With all due respect, you sound pretty righteous yourself.

      Thanks for sharing your perspective.

    • Michael April 6, 2014 at 7:59 pm #

      Soren,

      I rarely comment on my wife’s blog, and I’ve given your comment some thought: what if he’s right? Are we just not accepting that t21 is a defect? And would accepting that bring us a bit of peace? And I realize that while you may have some background because you have an “immediate” family member with Ds (I don’t know if that means sibling, cousin, but I’m guessing it doesn’t mean you have a child with Ds), your comment rings of the same self-righteousness of which you complain and claim you managed to not be influenced by in making your decision to abort. You claim to know all sides of it, and go even further in deciding–because you know–what might bring us peace.

      But our viewpoints are completely different. Yours is completely prospective: you terminated a pregnancy because t21 is a defect that it is a deviation that causes with various health issues (you left out cognitive issues); for you “the heart of the issue” is limited to this because, preemptively, that’s as far as you took it. You may have an immediate family member with Ds, but you can not deny in good faith that that perspective–termination before birth–shapes your limited view. What I don’t know is whether you are also pushing some sort of post-rationalization. I only say that because people don’t usually charge others with “righteousness” unless they are coming from a place of defensiveness.

      When Finnian was born we were almost immediately faced with the fact that t21 causes health issues: he had to have major abdominal surgery the day after he was born that he surely otherwise would have died from. We have dealt with other issues as well that have required surgery, and other medical issues that require monitoring. We have had to deal with his limited, or developmentally delayed, cognitive issues–the truth is, we don’t know where his abilities will ultimately lie. We have had to fight a school district to get him a fair placement in school, and currently he is in T-ball, somewhat behind kids his age, but managing and having fun at times.

      Yesterday, he was playing shortstop and then spontaneously ran all the way into the outfield, to the fence, turned around and ran back. I just let him run. I do not see, however, how, if I had admitted to myself that t21 is a defect, I would’ve been more at peace.

      And the reason is this: we are so beyond that point. When Finnian was born, the first reality we had to deal with was that he had t21 and that it could cause various health and cognitive issues, and some of them manifested themselves upon birth. Simply saying “defect” would not change our realization. It’s just a word. Maybe we thought it, I don’t know. But I know we absorbed it; we went through the various stages of grief. Do we ever get away from the fact that Finnian has Down syndrome? Yes and no. Do we ever get away from the fact that t21 causes various health and cognitive issues? Yes and no. But our perspective is not purely prospective as is yours.

      Finnian laughs, cries, makes us laugh, drives us up the wall–you name it. So does our 17 year old. While you say we could talk all day about society’s acceptance of him, these things only hammer home that the world sees he has a defect. Yet, we also experience everyday adults and kids who seem him as a human being, a cute little boy, that like the rest of us, isn’t perfect except in his imperfections.

      You have no choice but to focus on the defect aspect of t21. That is your stopping point. If we were ever there, we left that focus a long, long time ago. You cannot presume to know what would bring us peace; and we don’t know what would bring you peace.

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