Tag Archives | prenatal screenings

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.

25

Choices

I’ve heard for years now – since Finn was born – about the high percentage of women who terminate their pregnancies upon receiving a prenatal diagnosis of Down syndrome.  There are conflicting reports about what the actual percentage is, but I think it’s safe to say that it’s pretty high.  Because of the numbers I’ve heard, I’ve wondered many times over the last few years if I actually might be acquainted with anyone who has terminated a pregnancy because of Down syndrome.  It’s a morbid curiosity, and a question I have never really wanted answered.

And yet, sometimes strange things happen in life.  Lives intersect, and people cross paths unexpectedly.  If by chance I were to cross paths with a woman who terminated a pregnancy because she received a prenatal diagnosis of Down syndrome, this is what I would say to her:

I support every woman’s right to choose, but in my heart, I can’t support every choice.  What you experienced was not a loss – calling it a loss is not being honest.  It was a choice – and that choice, on some level, is a rejection of my son and all people with Down syndrome; it’s a validation of the notion that my son’s place in the world is not a given.  You cannot make the choice you made and then try to be one of us – the parents who made a different choice, the parents who fight so hard for our children to have a place in the world.

I think your desire to look into my life, and the lives of other parents of children with Down syndrome, is misplaced.  I think it will make you hurt.  If you are hoping to see hardship and sadness so that your choice can be validated after the fact, I think you will be crushed with disappointment.  Because the truth is, my son is not a tragedy or a hardship, and our life with him is not sad.  He’s just a little boy, and we are just a family, and this is just life.  We do not regret having him, nor do we regret that he has Down syndrome.  It just is.  Our acceptance of our son and all the manifestations of his extra chromosome is not evidence that we are extraordinarily strong; we are only human, just like you.  We laugh, we cry, we celebrate, we get frustrated.  This is just life.  And I think you will see all of those things in other families with a presence of Down syndrome, too.

I think you will find that life has no guarantees.  If your choice was made out of fear of what might have been, all I can say is that what might have been might have been wonderful.  Anything can happen at any time in anyone’s life; Down syndrome is not the worst – and certainly not the only – thing that can happen.  But you’ve already made your choice, so there isn’t any point in my trying to explain the relative futility of that choice if it was made in an effort to keep life simple and happy and tidy.  Life is messy.  You should probably try to learn to embrace that.

I suspect that you are struggling to come to terms with your choice.  I won’t condemn you, but I cannot offer you comfort or solace, either.  Yours is a path you must walk alone; only you can find peace.  I hope you do find it one day.

38

On Not Knowing

I’ve written much of the following in various posts on my blog before, but I wanted to sort of compile it, as I’m hosting my book club’s discussion of The Unfinished Child at my house tomorrow night, and the central questions posed by the story are: has maternal technology made things easier for parents? And, is it always better to know a baby’s condition prior to its birth, or for that matter, is it better to know what the future may hold for us?  While I don’t believe there is a right or wrong answer to these questions, I have certain feelings about these issues based on my own experiences.

 

You can read my review of The Unfinished Child here, and my interview with the author, Theresa Shea, here.

 

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I was 40 when I found out I was pregnant with my sixth baby.  It was not a planned pregnancy, but we embraced it, and planned for what would be our second home birth.  Despite my “advanced” age, I declined all prenatal testing that would have picked up a genetic anomaly; home birth is by its very nature very low-tech and low intervention, and in all honesty, I just couldn’t imagine that I wouldn’t have a healthy, typical baby like all the rest of the babies I had had.  With my previous pregnancies, I did undergo some of the routine prenatal screenings, although never anything definitively diagnostic like amnio or CVS.  Looking back, I realize that each time I did submit to prenatal screenings, I did it, for the most part, under the assumption that everything would come out okay – normal. I don’t remember ever really suffering through much anxiety over the test results. I just did the screenings without a whole lot of thought, because that’s just what you do, right? I don’t think I ever gave much thought to what I would do if any of the screenings came back showing something unexpected. I just don’t think it really occurred to me that anything like that would happen to me – I couldn’t envision it.

 

 

 

So when I was pregnant with my sixth baby, I declined all prenatal screenings, with the exception of a mid-pregnancy ultrasound.  I was dying to know the baby’s gender, and I figured if there were any serious anomalies that would preclude a safe home birth, they would show up on the ultrasound. The ultrasound showed a perfectly-developing baby boy, and we were thrilled – the score would be evened: three girls and three boys.

During my last trimester, I began to retain A LOT of amniotic fluid. I developed polyhydramnios. By the end of my pregnancy, I was as big with one baby as I had been full-term with my twins.  My midwife and I knew that polyhydramnios could be an indication of an abnormality, but neither of us were overly concerned. After all, I had had the ultrasound which didn’t turn up anything irregular. She kept a close watch on me and the baby, and we were both doing fine.

I went into labor at right around 38 weeks. When my water broke, the amount of fluid that gushed and gushed was unbelievable. Finn was born in the wee hours of the morning on July 7, 2008. The birth itself went just fine, though the whole thing took quite a physical toll on me. The quick loss of so much fluid kind of put my body into shock, and I could barely stand up without help after Finn was born.

We were very surprised with how big I had gotten to see this tiny 6 pound baby emerge. I was so exhausted by the birth that I don’t think I was completely lucid or able to focus on details. I was surprised by Finn’s small size, but noticed nothing troubling about him. Michael was concerned about how the baby’s abdomen looked – it appeared distended. I couldn’t see what he was talking about. I just needed to rest. Our midwife stayed for a couple of hours after the birth and then went home. Later I learned that she did not go home to sleep, but to pull out her textbooks and do research. Something about the baby didn’t seem quite right, but she didn’t want to alarm us, and nothing seemed life-threatening, so she went home to gather information before bringing anything to our attention.

I slept. The baby slept. I woke every so often and tried to nurse him, but couldn’t get him to latch on. I was too exhausted to be concerned. I knew that babies are born with a reserve of fat and that they could actually go a day or so without feeding after birth and be fine. Besides, I remembered that it took some time for some of my other babies to become alert enough after being born to nurse. Finn didn’t pee or poop either during those first several hours. I wasn’t concerned. I was too tired, and my whole body hurt. I felt like I had been run over.

My midwife came back early in the afternoon of July 7 to check on me and the baby. While she was there, Finn opened his eyes for what seemed like the first time. I will never forget that moment.  He gazed at me, and I saw it in his face then . . . It was fleeting, and I pushed the thought away. No, it can’t be, I told myself. I didn’t say anything. I noticed that Sue, my midwife, was doing an extremely thorough exam of the baby – way more thorough, it seemed, than she had done of Lilah when she was born. Still, I refused, or was unable, to register that something might be amiss. Then she showed me the palms of his tiny hands, how they each had a single line crossing them (which I had never seen or even heard of before), and she gently said, “You might want to bring this to your pediatrician’s attention when you take Finn in.” “Why?” I asked. “Because,” she said, “it can sometimes indicate certain genetic anomalies.” I went cold then. “Like what?” I asked. But I knew what she was going to say even before she said it. “Down syndrome.”

Things got crazy shortly thereafter. Finn was by then about 12 hours old and still had not nursed, nor peed or pooped. Suddenly he started spitting up blood, and that was really the beginning of the rug being pulled out from under us. Leaving our midwife with our other kids, Michael and I had to rush our newborn to the ER where over the next several hours he would be hooked up to an IV, have a tube fed into his stomach to flush it repeatedly, and undergo a number of exams and tests which would eventually show that he had a duodenal atresia, which explained my polyhydramnios, and also explained why he wasn’t peeing or pooping. He was admitted to the NICU, and we went home that night with empty arms. The next morning, at one day old, Finn underwent major abdominal surgery to correct the duodenal atresia. Relatively speaking, in the gamut of abnormalities and surgeries, this was straightforward, but it was, of course, devastating to us to have to leave our baby and to see him struggle to recuperate from the surgery. He spent 12 days in the NICU, and it was during that time that we received confirmation via a blood draw that he did, in fact, have Down syndrome.

Sometimes I wonder, looking back, if the news of his Down syndrome might not have been quite so crushing had we not also been dealing with his having to have surgery and to be in the hospital instead of at home with us. It all seemed to compound it.

Despite the fact that it was a very difficult time, I’ve never regretted not knowing before he was born that he has Down syndrome.  It seemed to me Finn himself was the first one to tell me, when he opened his eyes and I saw it in his face for that brief moment. I wasn’t ready to accept it then, but there it was. I actually hold that moment as very precious now; I can’t imagine a better way to have been told.

 

 

 

We believed that Finn was our last baby, but I found myself very unexpectedly pregnant again at the ripe old age of 44.  I was scared – it didn’t seem to me that at that age it could end well.  More than anything, I was afraid I would miscarry, but feelings of doom and gloom lifted with the passing of my first trimester.  I settled into being pregnant again, and there was never any question that we would plan for another home birth.  I think a lot of people were surprised and incredulous when I revealed that I would not undergo any prenatal testing, with the exception of an ultrasound.  I’m pretty sure that at least some people thought we were being stupid and reckless – a home birth, and no prenatal screening at my age?  And after already having given birth to a baby with Down syndrome!

 

 

 

Only, I didn’t see it that way.  It’s not that I was choosing the bliss of ignorance, necessarily, but how I chose to approach this pregnancy had very much to do with my feelings about Finn – about his birth, his diagnosis and how that was delivered to us, and his very personhood.  Was I truly okay with it?  I did not feel that knowing this baby’s chromosomal makeup before she was born would benefit her or me – I was only concerned that she was physically healthy enough to be born safely at home.  My midwife supported my choice not to have any prenatal screenings beyond a 20-week ultrasound, but I think even she worried about the odds of my baby having a genetic anomaly based on my advanced age and the fact that I’d already had a baby with Down syndrome. 

 

 

 

Scarlett was born at home a day past her due date on a warm summer evening.  I had a wonderful, easy pregnancy with her, and her birth was probably the best of all my births.  After she slipped out into the world, and I pulled her up and held her in my arms, I remember my midwife taking one of her tiny hands and spreading her fingers out, examining her palm and showing it to me.  “See?” she said, showing me the typical double crease.  “I don’t care, I don’t care,” I said.  “I just care that I have my baby here.”  I didn’t want those first few precious moments spent worrying or feeling relieved about her chromosomal makeup.  I wanted to just know her as my baby – not my healthy baby, or my defective baby – just my baby.  Exactly how my first moments and hours with Finn were spent.

 

 

I understand that for some people, knowing as much as possible in advance is helpful.  For me, there was a beauty in not knowing.  With all the hindsight and experiences I have behind me, my feeling is that maternal technology has a way of oversimplifying things and complicating things at the same time.  I think that prenatal tests tend to give either a false sense of security or a false sense of doom.  They reveal such a small part of the picture.  Prenatal tests can’t tell us what our children will be able to do; they can’t tell us what challenges we will face or avoid; they can’t tell us how much we will love our children, or how much our children will enrich our lives in ways we never imagined.  They can’t tell us what those lives will really look like, or how little control we really have over our lives or our children’s lives.

 

12

A Rambly Post In Which I Try to Address Technology, Choice, Societal Expectations, and Down Syndrome

Big news on the Down syndrome front: there has been a breakthrough in Down syndrome research as scientists recently figured out how to “shut down” the extra copy of the twenty-first chromosome that results in trisomy-21, or Down syndrome.  At least in a test tube – not yet in an actual human being.  But that may be a speck on the horizon.  The findings were published here.  As expected, there are a lot of articles and commentary popping up in response to this scientific headline; one such article, published here in The Boston Globe, also discusses new drugs that are set for clinical trials in the very near future to “treat” Down syndrome – specifically, to improve cognitive capacities of people with Down syndrome.

Louise Borke of North Andover said participating in trials of therapies is something she would seriously consider for her 24-year-old son, Louis Sciuto. He has two jobs and lives independently, and he rides his bike to her house to play basketball in the driveway, but like any parent she would love to give him every opportunity.

“If it would just make the individual a higher-functioning person with Down syndrome, I would be surprised if there’s anyone who wouldn’t want to try it,” Borke said.

As a parent of a child with Down syndrome, I feel like I am expected to weigh in on this – on potential gene therapy and drug therapy for Down syndrome.  Would I do it for my child?

Instead of answering that question, I think it’s important to examine what is at the root of that question: would I change my child if I could?

What bothers me about the whole thing is that it’s just another example of how we value life based on arbitrary standards, like intelligence and achievement and performance.  Those who are smart, who make a lot of money, who contribute to society in material ways – those are the people we as a society hold in high regard.  People who have lower intelligence, less than optimal abilities, who are dependent, are liabilities, and they are expendable.  And since we consider ourselves a civilized society, we try to improve and fix them.  It’s all cloaked in “wanting what’s best” for our kids.  Wouldn’t you like to make your child’s life better?  Wouldn’t you like to make your child’s life easier?  Wouldn’t you like to remove or lessen some of the struggles and hurdles they will face?  Wouldn’t any good, loving parent want those things for their child?

All of this assumes that “treating” Down syndrome – by way of gene therapy, drug therapy, physical therapy, speech therapy, or whatnot – actually does improve – well, to put it bluntly, people with Down syndrome.  Whether it actually does remains an open question that really cannot be answered since it is impossible to take a child and subject him or her to the various therapies available and compare the “results” to the very same child not subjected to those therapies.  There is such a range of manifestation of Down syndrome, and nobody who has their child in various therapies can truly claim that their child’s abilities are improved by therapy because they’ve not observed their child at the same age and stage without therapy; by the same token, those parents whose children undergo little or no interventive therapy can’t say for sure if their child might be different with therapy since they haven’t observed their child at the same age and stage with therapy. This has always fascinated and frustrated me – how many parents insist that therapy has made a huge difference for their child.  How can they really know?  What is true is that we parents of children with disabilities are very much subjected to judgment and societal expectations that we will take measures to improve our children, because it’s irresponsible not to do so – not to take advantage of all the technological advances that have been made.

If what we are talking about it quality of life, then we have to ask ourselves: does smart and able equal happy and successful?  Is an easier life a better life?  Is a life with fewer struggles a better life?  These are philosophical questions to which there are no simple answers.

One of the things I heard most often in the weeks and months after Finn was born was “Didn’t you do the testing?”  People seemed genuinely surprised that in this day and age when it’s common practice to find out everything you possibly can about your fetus before it’s born, that I had chosen not to.  People seemed especially surprised given the fact that I was 40 when I got pregnant with Finn – didn’t I realize my risk factors?  And the fact that I chose home birth – extremely low tech and low intervention by its very nature – many people for some reason seemed to think that where Finn was born had anything to do with the condition he was born with – as if there might have been a different outcome had he been born in a hospital.  When I found myself pregnant again at the age of 44, I incited more surprise, and perhaps even disdain, when I again declined prenatal testing and planned for another home birth.  It was reckless, irresponsible not to take advantage of everything modern technology has to offer.

Only, I didn’t see it that way.  It’s not that I was choosing the bliss of ignorance, necessarily, but how I chose to approach my pregnancy with Scarlett had very much to do with my feelings about Finn – about his birth, his diagnosis and how that was delivered to us, and his very personhood.  Was I truly okay with it?  I did not feel that knowing Scarlett’s chromosomal makeup before she was born would benefit her or me – I was only concerned that she was physically healthy enough to be born safely at home.  My midwife supported my choice not to have any prenatal screenings beyond a 20-week ultrasound, but I think even she worried about the odds of my baby having a genetic anomaly based on my advanced age and the fact that I’d already had a baby with Down syndrome.  After Scarlett slipped out into the world, and I pulled her up and held her in my arms, I remember my midwife taking one of Scarlett’s tiny hands and spreading her fingers out, examining her palm and showing it to me.  “See?” she said, showing me the typical double crease.  “I don’t care, I don’t care,” I said.  “I just care that I have my baby here.”  I didn’t want those first few precious moments spent worrying or feeling relieved about her chromosomal makeup.  I wanted to just know her as my baby – not my healthy baby, or my defective baby – just my baby.  Exactly how my first moments and hours with Finn were spent.

Back to the question of whether I would undertake gene therapy or drug therapy for Finn.  In all honesty, I think it’s still going to be quite a while before either of those therapies are so readily available to the general public that I will even be faced with a decision about that.  In the meantime, I want to spend my time and energy as Finn’s mom advocating not for him to change in order to fit into the world better, but for the world to be more accepting and accommodating of Finn and of diversity.  I want to instill in Finn a strong sense of himself – a belief in himself just as he is.  And if and when the time comes for a decision to be made about gene therapy or drug therapy, I would like to think that Finn himself would be very much a part of that decision process.

11

Expectant

One of the baristas at the Starbucks I go to every morning to get my fix is pregnant with her second baby.  Although she’s obviously quite a bit younger than I am (who isn’t?), she and I have become friendly, not only because I’m in there every day, but because she and I were pregnant at the same time – she with her first, and me with Scarlett.  Although we really didn’t become friendly until after both of our babies had been born.

Anyway.

It’s not like this deep bonding has taken place, but, you know, we talk about our babies, etc., etc., and she’s sufficiently in awe that I have given birth to and am raising seven kids and have not only (thus far) lived to tell about it, but actually walk in on my own two feet every morning not entirely grumpy.  (I have to admit, I kind of like being the subject of someone’s awe.  Even if that awe is misguided.  I suspect, because she’s made many a church reference, that she, like a lot of people, assume that my having so many kids must have something to do with my faith in god and not due to practicing Birth Control By the Seat of Your Pants.  I’m sure she would be horrified to learn that I’m not a Believer.)

She’s indicated that this pregnancy was not planned.  She got pregnant when her first was only, like, eight or nine months old, I think.  But she’s happy about it.  And when I go in, I get to hear about her doctor appointments, ultrasounds, and so forth.

So this morning she told me that she’s having another ultrasound later this week because “they want to get a better look at his heart.”  Apparently, the tech just couldn’t, for whatever reason, get a good look at the baby’s heart during her big 20-week ultrasound.  At least that’s what they told her – who knows, right?  But she told me how upset she was, how this happened on a Friday, and she spend the entire weekend being a wreck, convinced that there was something wrong with her baby.

That was when I could feel my defenses activating.  I tried to keep them in check.  Awareness is key.

Why was I suddenly feeling so defensive, though?

She went on to tell me that she called her doctor, and he reassured her, telling her that they had no reason to believe that there is anything wrong with her baby, they just weren’t able to get a good look at his heart.  This relieved her greatly, as she conveyed to me.  “I mean, gosh, I’m sitting there, a mess, thinking, ‘What if there’s something wrong with him?  What if he needs surgery?'”  While she’s telling me this, I’m willing her with my telepathic powers to not say something stupid, like, for instance, “I was really scared it might mean he has Downs or something, you know?”

Of course I’m projecting here.  I know that. And it’s really not fair of me.  I mean, of course she wants her baby to be healthy – who doesn’t?

It’s just that “healthy” has taken on a whole new meaning for me since Finn was born.  I think what most people mean when they say they just want their baby to be “healthy” is really “normal.”  As in, no physical or mental defects, please.  No, I’ll pass on the bonus chromosome, thank you very much.

And people have a right to want that.  I know that.

Still, it makes me feel defensive.

I wanted to say to her, “Get a hold of yourself, girl!  You have no perspective!  You think giving birth to a ‘healthy,’ ‘normal’ baby is any kind of guarantee of an entirely ‘healthy,’ ‘normal’ life?  It’s not.”

But I didn’t say that.  Instead, I blurted out, “My four-year old has Down syndrome.  It’s not the end of the world.”

She started kind of babbling then – I had clearly made her uncomfortable.  For good measure, I threw out, “I didn’t know until after he was born, but I’m glad.  I didn’t do any testing.  He was born at home.  Scarlett was born at home, too, and I didn’t do any testing with her, either.  Sometimes information can be a burden, I think.”

I’m sure I completely ruined her day.  She’s probably a wreck again, wondering about her own baby.  I feel kind of bad.

But seriously.  The older I get, the more I wonder about all the obstetrical technology we have, and what good it really does.  (Obviously, since I opted for very low-tech home births my last three goes at this, I stopped seeing technology as a positive quite a long time ago.)  It seems like part of its appeal is a sense of security that everything will be fine, nothing will spring up and bite you in the ass, ruining your fairy tale, because it’s all about knowing and being prepared.  It’s all about having the power to control the outcome.  But that’s largely an illusion, I think.  And on some level, removing the mystery from it all also removes a certain reverence.  Being determined to control everything to the extent we humans do is pretty arrogant, don’t you think?

Or maybe I’m just talking out of my ass.  That’s possible, too.

 

30

Life, Choices, and Down Syndrome

SPOILER ALERT: In this piece, I discuss themes and incidents from the book, The Unfinished Child by Theresa Shea.  If you plan on reading the book, you may want to come back to read this after you have read the book.

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I wanted to talk more about some of the underlying themes in this book I just finished –  The Unfinished Child – which I cannot recommend highly enough.  I wrote a review here.  Although the story is fiction, it undoubtedly could have been pulled from the lives of countless people over time and across the world; it tackles issues which are certainly very real and relevant.

I am always honored when my humble book blog catches the attention of an agent, publisher, or author who asks me to read their book and write a review.  When author Theresa Shea first contacted me to let me know about her new book, I was intrigued mainly because she said that it dealt with Down syndrome.  I asked her what her personal connection to Down syndrome is, and she told me:

My personal connection to Down syndrome is that when I was pregnant with my first child (he was born when I was 35), I was subjected to the genetic counselling that is mandatory here in Canada for women when they turn 35 (the big red RISK gets stamped onto your file).

I gave blood thinking, what the hell, I’m healthy, and then got the results back that signalled an increased risk of having a child with Down syndrome (yes, the alphafetaprotein test). The call came on a friday afternoon. My husband and I were working. We came home and the doctor’s office was closed. I cried all weekend, convinced something was wrong with my baby. Then the doctor’s appt. and the numbers that we had 1 in 268 chance of having a baby with Down syndrome. I was so mad that they had put me through my weekend of angst for those numbers. It seemed ridiculous.

I have 3 “healthy” children, and I didn’t have any more tests after that (not even ultrasounds) because I figured that going into parenting with that degree of fear wasn’t good for anybody. My children were wanted, and we figured we’d take what we got. I have no doubt that love would have happened with any child we were given.

She went on to say in another email,

Life is risky, even if your children are born “healthy.” That doesn’t guarantee a “normal” life. I think people dig deep when they have to.

She also described to me how her sister had received a prenatal diagnosis of spina bifida.

There went any joy in THAT pregnancy, and yet the outcome was the same– she gave birth to a child with spina bifida. Did she REALLY need to know in advance? Tough questions, and I don’t presume to have the answers for everyone.

I assumed, perhaps naively, that her novel would unfold similar to her personal experience: the main character would either suspect she was carrying a baby with Down syndrome and then turn out not to be, or would turn out to actually be carrying a baby with Down syndrome, but would have and keep the child after wrestling with the decision, and then, of course, discover the joys that most of we parents of children with Down syndrome find.

That’s not what happens.

What happens (and here’s the SPOILER) is that after receiving a definitive prenatal diagnosis of Down syndrome, she terminates her pregnancy.

I will tell you that I wanted to somehow reach into the book and change her mind.  Right up until she actually goes through with it, I sat there, unable to tear myself away, willing her to not go through with it.  I wanted so, so very much for her to change her mind.  But she didn’t.  She goes through with it, and the actual abortion is described briefly but graphically, and it ripped a piece of my heart out.  I was actually sobbing as I read it.  Sobbing for the baby, and sobbing for the mother.

The loss is so palpable, so real and immediate.  Yes, the loss of the baby’s very life – or at least potential life.  The loss of possibilities.  And Shea does a wonderful job of showing the reader the profound loss that the mother experiences, as well.  She grieves.  She is not glad to be rid of it.  And you just know that she will never be quite the same again.

I think the tendency is to vilify women who choose to terminate a pregnancy.  Even I, who hold myself to be staunchly pro-choice, feel angry and slighted in some way when discussions about abortion turn to abortion based on prenatal diagnoses of Down syndrome.  How can I not feel a personal affront when someone makes a conscious choice to avoid having a kid like mine?  “People are too hung up on perfection,” I say.  “People who want only perfect kids shouldn’t become parents at all,” I’ve said.

But it’s just not that black and white, and The Unfinished Child illustrates this extremely well.  While in many ways, we in western society do seem hung up on perfection and competition, this is not, in reality, why most people who abort for Down syndrome make that choice.  Rather, it’s usually an agonizing decision, and one weighted by the understanding that the world is still largely, in this day and age, an unkind and even dangerous place for people with disabilities.  Alison Piepmeier wrote a wonderful article about this recently: Outlawing Abortion Won’t Help Children With Down Syndrome.  The sad reality is that it’s we who have created and perpetuated the intolerant climate that surrounds disability and difference.  How can we continue to marginalize people with disabilities and then scream and yell about “baby killing” and “ripping babies from mothers’ wombs”?

I think there was an epiphany for me while reading this book, and that is that the women who choose to terminate their pregnancies based on a prenatal diagnosis of Down syndrome or some other disability are not villains, they are most likely not selfish, not shallow, not bad people.  They are women who are afraid – perhaps of the disability itself, perhaps of the intolerant climate disability resides in.  They see in themselves an inability – whether financial, physical, emotional, or otherwise – to bring such a child into the world under current circumstances.  Who is anyone to tell them they are wrong?  Until we are willing and able to make the world a more welcoming place to people with disabilities and differences, by seeing every person’s intrinsic worth as members of the human family, as so eloquently written by Amy Julia Becker in her article in The Atlantic, by taking care of those who are vulnerable, by providing (and not cutting) resources to help people with disabilities live better lives, by championing true inclusion, by teaching our children kindness, compassion, tolerance, and acceptance – until we are willing and able to do all of those things for people who have already been born, then I don’t believe we have the right to shake our fists about abortion.

Prenatal testing figures heavily into The Unfinished Child, too.  This is relevant, as most people know, because a new generation of prenatal screenings specifically targeting Down syndrome has already hit the market, making a prenatal diagnosis of Down syndrome possible in the first trimester of pregnancy – and it’s a competitive market, with different companies vying for their very own piece of this economic pie.  The majority of the Down syndrome community is up in arms about these new tests because they do target Down syndrome (which is not in and of itself a sickness or disease or a condition that is incompatible with life), which smacks of eugenics.  What does it say, after all, about how society feels about people with Down syndrome when society appears so eager to eradicate Down syndrome?  And what will happen to already dwindling resources and funding for research to help people with Down syndrome if Down syndrome becomes a rare condition?

We laud technology and how advances in science, medicine, and diagnostics improve our lives.  And yet, there is a burden that comes with these advances: the burden of choice.  What do we do with the information technology gives us?  Is it better to know your baby has Down syndrome before he is born?  Again, there are no easy answers; it’s not black and white.  Although I am pro-choice, I’ve never thought myself capable of choosing to terminate a pregnancy myself.  I’ve always been extremely grateful, however, to have not known about Finn’s Down syndrome until after he was born – in part because I was never faced with having to make that choice.

6

Hostile World

It seems to be a dark time for Down syndrome.  Lots of bad shit happening.  And maybe it’s really nothing new – in fact, it’s not, because throughout history, people with Down syndrome have been subjected to unspeakable abuse, neglect, discrimination, and cruelty.  The cruelty nowadays comes under different guises than it used to, but it’s still going on, and thanks to the prolific media, social and otherwise, stories abound.

***

Last week there was this story which alleges that a teacher was discovered to have visited some terrible abuse on a little girl with Down syndrome in her special education classroom.  I wanted to verify the story outside of the mom’s blog, and sadly, a Google search of “teacher abuse student with special needs” turns up a flurry of stories.  This shit is pretty prevalent, apparently.  And it’s one of my most gut-wrenching fears – that someone will harm Finn and he won’t be able to protect himself or to tell me.

***

Have you heard about Robert Ethan Saylor?  His story is creating tidal waves in the Down syndrome community.  In short, he was a 26-year old man with Down syndrome who, back in January, went to a local shopping mall with his caregiver to see Zero Dark Thirty.  When the movie was over, his caregiver went to get the car, leaving Saylor, I believe, in the lobby of the movie theater to wait.  Saylor decided he wanted to see the movie again, so he returned to the theater without buying another ticket.  Theater personnel attempted to get him to leave or buy another ticket, and he refused.  Mall security was called – they were off-duty police officers moonlighting as security guards.  Somehow, the situation escalated to the point of Saylor ending up face down on the ground, handcuffed.  He died there, of what the coroner later deemed “positional asphyxiation.”  His death, however, has been officially blamed on Saylor’s Down syndrome, not on the officers who placed him in the position that resulted in his death.

The story is troubling for a number of reasons.  First of all, a person died.  A 26-year old man lost his life over a lousy movie ticket.  It seems apparent that the officers were not trained in dealing with persons with intellectual disabilities.  If they had, the situation surely would have been dealt with differently, and the story would have ended differently.  Also troubling is the fact that there has been very little – if any – outrage outside of the Down syndrome community.  Had this been a 26-year old man without a disability – without Down syndrome – I would bet my life that the level of outrage would be multiplied ten-fold.  Also disturbing is the fact that an internal investigation within the police department that employs the officers involved found no wrongdoing, and although the coroner deemed Saylor’s death a homicide, a grand jury has decided not to pursue criminal charges against the officers.

It’s like Saylor’s was a throwaway life.  A disposable life.  After all, he had Down syndrome.  What value did he have, except maybe to his family?  It’s crossed my mind to wonder if on some deep level, people think of it as an abortion that just happened 26+ years late.

***

A few days ago, I was asked by an acquaintance who works as a tissue broker (that is, he deals in human tissue for research) if there might be anyone in my Down syndrome contacts who would be willing to donate a small blood sample for a client of his that is undertaking a research project pertaining to Down syndrome.  There was a part of me that hoped that the research might be on the order of better understanding Down syndrome and/or bettering the lives of people with Down syndrome.  But I suspected that it probably had more to do with preventing Down syndrome.  This suspicion was confirmed when I asked what the research was and was told that the client is a company that is in the process of developing a new “diagnostic” test for Down syndrome.  A prenatal diagnostic test.  I felt sick to my stomach at that moment.  “How fucked up is that?” I asked myself.  “That in order to develop a test to prevent Down syndrome, they need a person with Down syndrome to contribute to the endeavor by donating a little blood.”  I told him no, I don’t know anyone who would be willing to contribute to such a project.

Apparently the new generation of prenatal screenings that are specifically aimed at Down syndrome have created a competitive market.  Everyone wants in now.  I guess it’s no surprise.  Once the technology is there, there is no undoing it, there is no turning back the clock.

As I’ve said before, I remain pro-choice.  It’s not a moral judgment about abortion in general that I’m making, but I do find it very troubling and disheartening that Down syndrome is being so openly targeted, and that a fair and accurate picture of real-life Down syndrome is not generally given along with a prenatal diagnosis.  What real choice is being made if it’s not a fully informed choice?

***

It’s all very paradoxical.  On the one hand, people with Down syndrome are living better-quality lives than ever before thanks to greater understanding of Down syndrome, advances in medical care, and community resources and supports.  On the other hand, the world is still largely a hostile place for people with Down syndrome – a place where children with Down syndrome are abused by adults in positions of power and trust, a place where adults with Down syndrome die because of the ignorance of people around them, a place where companies are vying for a corner on the market of eradicating Down syndrome.

 

16

Defending His Life

Everyone, it seems, has heard about the recent case in which an Oregon Couple Has Been Awarded $2.9 Million For the “Wrongful Birth” Of Their Daughter.  Articles, blog posts, online message boards, and Facebook have all been rife with emotional responses to the verdict.  As for me, I’ve been trying to digest the whole thing and figure out what I, as the parent of a child with Down syndrome, could possibly add to the conversation taking place regarding this case, which comes right on the heels of the new and improved prenatal screenings which specifically target Down syndrome, and the firestorm surrounding those.

Pragmatically, I know that the jury’s verdict (which was reached 12-0) in the Levy case does not necessarily mean that the jurors believe that the Levys’ daughter never should have been born.  The lawsuit was brought against Legacy Health for several counts of negligence – basically, the Levys assert that the chorionic villus sampling (CVS) that Deborah Levy underwent at 13 weeks into her pregnancy was carried out improperly – that maternal tissue was taken instead of fetal tissue – and therefore, an inaccurate result came of the test, robbing the Levys the opportunity they had sought to be prepared.  And yes, they do say that had they been given the correct result – that the fetus she was carrying did in fact have Down syndrome – they would have terminated the pregnancy, as the vast majority of people seem to do in the face of a prenatal diagnosis of Down syndrome.

Basically, after all the evidence and testimony was laid out, the jurors agreed unanimously that Legacy Health had been negligent and had carried out the test improperly, therefore depriving the Levys of the opportunity to make a decision about the pregnancy.

Sigh.

I can’t find it in me to vilify the jury – although I do absolutely have to question what kind of fucked up world we live in where people can sue for the wrongful birth of a child.  The jury apparently did its job, however: they listened to the testimony and they looked at the evidence, and they came to a conclusion – and like I said, their conclusion does not necessarily mean that they agree that the Levys’ daughter should not exist today; it just means that they agreed that the lab that carried out the test carried it out improperly.

I’d like to be able to say that I can’t find it in me to vilify the Levys, either, but I’m having a tough time with that.  They have been insistent that they would have aborted the pregnancy had they known that their baby had Down syndrome.  And yet, they also claim to “deeply love” Kalanit, who is now four years old.  Actually, I sort of get the “I would have aborted had I known” line of thinking.  I’m sure there are many parents of children with Down syndrome who, for whatever reason, didn’t find out about their child’s diagnosis until after birth who might say, “Had I known beforehand, I would have terminated,” but that’s almost always followed up with, “But, goodness, am I ever glad I didn’t!  I can’t imagine life without him/her.”  I wonder if the Levys have ever said that – that they’re glad they didn’t abort.  I kind of doubt it; saying that would have hurt their lawsuit.

It seems to me that they have had to hold onto an awful lot of anger and bitterness to pursue such a lawsuit.

I’m still not sure how the multi-million dollar verdict can be reconciled.  Apparently, it’s intended to cover “the estimated extra lifetime costs of caring for a child with Down syndrome” to wit:

Miller [the Levys’ attorney] said they sued because they worried about providing all that their daughter would need over her lifetime. Experts testified that she will continue to need speech and physical therapy and face a concerning list of possible medical problems over her lifetime. Professionals have told the Levys that she will likely never be able to live independently, or earn a living.

So the dollar amount was based on expert testimony (originally, the Levys had sought $7 million).  Who are these “experts” and “professionals”?  Are they the same experts and professionals who paint such a bleak (and outdated!) picture of life with Down syndrome that most parents facing a prenatal diagnosis decide to abort?

First off, speech and physical therapy are paid for by the State.  Apparently, the state of Oregon is actually one of the better places to live in the US if one has disabilities and requires services.  And the “possible medical problems”?  Don’t all of our kids – Down syndrome or not – face a multitude of “possible medical problems” over the course of their lives?  Yes, Down syndrome puts one at higher risk for certain health issues, but risk isn’t guarantee, and my understanding is that the Levys’ little girl is healthy.  And “likely never be able to live independently, or earn a living”?  I mean, gosh.  Can we project anymore of a grim or speculative future for this little girl?

I think what bothers me the most about this whole thing is that this case just bolsters the apparent world view that people like my son, Finn, are burdens, errors, mistakes.  It not only undoes all the advocacy I and so many other parents have worked so hard to undertake, it paves the way for lots more lawsuits just like this.  (And if the Levys so deeply love their daughter, as they say they do, one would think that they, too, would at some point advocate for her, for her worth, her value to her family and to the community.  But how can they now that they’ve fought and won a lawsuit that renders her life a mistake?)

I was looking through old photos of my kids over the weekend, reminiscing as mothers do, and it hit me: Finn is the only one of my kids whose very existence I’ve had to justify – ever since the first person asked me after he was born, “Didn’t you have the testing?” like an accusation.  This could have been prevented, you know.  On some level, I’ve been defending his life since he was born, and I suspect I will have to keep on defending his life for the rest of his (or my) life.  And why?  Because he’s a little different.  Because he’s a little slower.  Because he needs some extra help.

These are people we’re talking about!  Human beings!  Not defective merchandise.  Not a dress that ended up not fitting when we got it home.  They are people.  People we created.

Sometimes it all just feels like a losing battle, the energy and tears and passion I expend to make the world see Finn and people like him as worthy and valuable.  What kind of world are we living in?

Thank you, Ariel and Deborah Levy.

12

Who’s Cut Out For This?

I remember when, several years ago, a group of women friends and I sat around chatting, and the conversation turned, as it often does with a group of women, to pregnancy and motherhood.  One friend in the group was recounting her amnio with her last pregnancy, telling us all how it really was no big deal.  She said, “Of course I had an amnio – I could never handle a kid with special needs.”

In this whole firestorm over the new prenatal tests aimed at detecting Down syndrome, and the ongoing debate about terminating pregnancies when a prenatal diagnosis of Down syndrome is made, there seems to be a common refrain: “Not everyone is cut out to parent a child with special needs.”

Who is cut out to parent a child with special needs?  I can tell you that since becoming Finn’s mother, I’ve been told more times than I can shake a stick at that “special kids are given to special parents.”  I think this is a well-meaning platitude that sounds good but really doesn’t carry any weight.  I can assure you that the badge of Special Parent is only given after the fact.  I wasn’t special before Finn was born – and the truth is, I’m not special now, either.

How does one envision a person who is cut out to parent a child with special needs?  What traits and qualifications does that special parent supposedly have?

I’m just a regular girl with no special qualifications, and plenty of faults.  I’m not especially long on patience; I’m a little on the anal-retentive side; I’m a creature of habit; I value me time.  I enjoy a good book, a nice martini (when I’m not knocked up), and an occasional night out with the girls.  I think it’s important for my husband and I to have somewhat regular “date nights.”  I swear.  A lot.  I like a good dirty joke and I’m not above potty humor.

I have no special skills – nor are any required of me – to be Finn’s mom.  All that’s required is that I love him – and that’s easy.  As easy as breathing.

I know that when Finn was born and we learned that he had Down syndrome, I, too, protested: “I’m not cut out for this!”  I’m not even sure what I meant.  I’m not sure what I, at the time, thought made a person better qualified than me to have a child like Finn.

What sort of picture do people who insist they’re not cut out to parent a child with Down syndrome have of the everyday lives of families of children with Down syndrome?  I’m trying to remember what picture I may have had.  I don’t think I really had a particular picture in mind, just a sense that there must be a whole lot of sadness and sacrifice involved.

That’s not what our life looks like in reality, though.  Our family life really hasn’t changed at all since Finn was born.  Michael and I still have date nights, we have two wonderful babysitters who adore Finn and have no qualms about sitting for him and the other kids.  We still do Little League and gymnastics and swim lessons.  We still take the kids out to dinner and ice cream once in a while, we’ve managed a couple of family road trips, we go to the park and we have picnics.  We crank up the stereo and have dance parties in the living room after dinner.  We laugh.  A lot.  We have a busy, raucous house.  Finn hasn’t changed that; he’s only added to every aspect of our family life.

What are any of us really cut out for, anyway?  Life lobs so many curveballs at each of us over the course of our lives.  How many things have you already stood up to and discovered that, yeah, you actually can do this – things you never dreamed you were cut out for?  What would life be like if we all could opt out of every challenge or unexpected event that landed on our doorstep?  Do we avoid the things in life that teach us, that expand us as human beings, that show us what we’re really made of just because those things do not fit into the plan we had for ourselves?  And if so, what does that say about us?

Something to think about.

9

I Get Around

I am very honored that I have been asked to post as a guest blogger on two different blogs recently.

I was asked to share my experience breastfeeding a baby with Down syndrome over on Down Syndrome New Mama; last week I shared our story, and this week Part II has been posted which talks about tips and advice to deal with hurdles commonly associated with breastfeeding a baby with Down syndrome.  Down Syndrome New Mama is such a great resource of information for new parents of babies with Down syndrome, and it’s my hope that some expectant or new mom out there will find some encouragement in breastfeeding her little one.

***

With the recent introduction of new prenatal screenings aimed at detecting Down syndrome in the first trimester of pregnancy, a vital discussion is taking place online about the ethics of the testing and the potential implications for the Down syndrome community and society as a whole.  Patti at A Perfect Lily has been running a series of posts concerning this topic, and has asked several people to write guest posts for her readers.  So much of the discussion about prenatal testing that is taking place everywhere on the internet seems to revolve around the pro-life vs. pro-choice debate, and for many, the answers to the questions are found in their religious beliefs.  My feeling is that this issue has very little to do with religion – or, rather, centering it on “God’s laws” only serves to alienate an entire potential audience.  Today, I share my perspective on Patti’s blog; I hope you’ll read it, think about it, and share it:  It’s About Wanting a Baby.  It was brave of Patti to feature a Heathen like me on her blog – thank you, Patti!

Next week, I’m hoping to write here on my very own blog a little more about discussions that center around God that shouldn’t.  Stay tuned.

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