Christa Couture sees beauty in resilience

Photos by Jen Squires

By Louise Kinross

I was scrolling through Twitter when my eyes locked on an image of a pregnant woman. Taken from the side, her belly was the centre of the photo, and her closest leg had a brilliant floral pattern on it that matched her cropped shirt. It was a prosthetic leg. I clicked on the link to find this CBC piece by Canadian folk singer and songwriter Christa Couture: I Couldn’t Find Any Disability Maternity Photos, So I Created My Own.

In the article, Christa writes: “I struggled to imagine my own maternity photos when I couldn’t find any examples of them with a body like mine…There aren't a ton of one-legged people out there, true, but it wasn’t just that I didn’t see any amputees in maternity photos—I didn’t see any kind of disability. At all. Or really any other body differences.” So she did a shoot with photographer Jen Squires.

Christa's leg was amputated at age 13 due to bone cancer. She's experienced the loss of two sons: Emmett and Ford. “It took time to be open to a pregnancy," she told me. “I knew it would be hard because I have a disability, and because it would bring up stuff around Emmett and Ford that I probably wouldn’t have to confront if I didn’t go through another pregnancy. But I kept coming back to how much I wanted it, and I wanted so badly for it to be different. That desire overpowered the fear.”

We spoke about her amputation and why she hopes the next person who does a search for 'disability and pregnancy' finds her photos.

BLOOM: What was it like as a young teen to experience having your leg amputated?

Christa Couture: I was first diagnosed with Ewing's sarcoma when I was 11. I had chemotherapy and radiotherapy and went into remission. Then, just before my 13th birthday, the pain came back. Very quickly, a couple of days after they did a biopsy, my leg was amputated.

When people ask me about what it was like, I tell them ‘I don’t know what it’s like not to have cancer.’ Not only was it normal for me, but I was spending a lot of time in hospital where I was surrounded by other kids with cancer. As much as that’s a painful reality and now, as an adult, I’m like ‘Oh my God, we were so small,’ at the time, we didn’t have that perspective. It was just our world.

I had cancer when we lived in Edmonton. I have great memories of nurses who were so fun and made the experience as good as it could be. It was hard, because I was really sick, but it was so normal. It wasn’t until my later teens that I came to terms with the fact that it was really difficult at the time. 

When I was in high school with a thousand other people, none of whom have cancer, I realized I’m kind of unusual. This is an extraordinary experience. I felt separate, especially after losing my leg and being in the regular world, knowing it wasn’t normal, and everyone was going to stare and ask me what happened.

I didn’t even recognize it as permanent until I was in my late teens—that I have one leg and as I move toward being a young adult, things were physically harder. Like finding a first job when you can’t be on your feet all day.

In some ways it was like an exaggerated adolescence. It’s already this time of change, and becoming aware of your body, and for me it was a dramatic, radical change, and I had to learn how to walk again.

BLOOM: I’ve seen other kids who learn how to walk with prostheses here, and it’s always struck me how hard it is. I think there’s a public perception that you just put on the technology and get up and go.

Christa Couture: People don’t realize how challenging a prosthesis is, because they see what looks like a limb, and they think it must operate like a limb. But this is not a limb that works like any other part of my body. It’s a device that doesn’t come naturally.

I had to program my brain to use this equipment, and it was a long, slow process. It was like taking my first steps again. It wasn’t until some point in my 20s when I felt like I could function pretty easily. It’s a huge learning curve, and it’s not at all like having two legs. As someone who has an acquired disability, I remember what it was like before, and it’s completely different.

I don’t know if people expect it to be easy because they see Paralympic athletes.

BLOOM: Elite athletes.

Christa Couture: We don’t tend to see people who are using prosthetics in an ordinary, daily way. The reality is that it’s challenging and slow and it means not doing a lot in a day physically.

BLOOM: What advice would you give a child who's at the beginning part of rehab?

Christa Couture: I would say it gets easier, but it takes a long time. There’s good cause to be hopeful, and to know that your body will get stronger and will adapt and will learn. But it’s not quick, and it’s realistically difficult to do. Eventually everything is possible, but you’re going to be doing it a little differently.

Now, I love the way things are different for me. At this point, the experience of losing my leg and having a disability feels like I’ve been to a country most people haven’t been to, and I have this perspective which is so rare and feels precious. It feels amazing that I’ve gotten to know something about myself that many don’t—as far as resilience and adaptation and adjusting. There’s ways that it’s harder and it’s a major bummer. And then you get used to it, and you get good at it.

BLOOM: I read that your current leg has a micro-processor in the knee?

Christa Couture: My folk music community raised $25,000 to buy a knee that costs $40,000, and is not covered by public health care. Then I got this floral thing done to make it decorative.

Because there was media coverage, a lot of people knew about the knee, and they thought ‘she’s now part robot.’ People would say ‘Is everything better now?’ And I had to tell people it’s a little better, but I can’t leap over buildings. It’s not a super power.

What is better is that I fall less often and I have better stability when walking on rough terrain. That for me is a huge difference. But it’s not a super computer and it’s not like I can charge my iphone with it.

The things I can do now, for anyone with two legs, are really basic.

BLOOM: The design on your leg is gorgeous. It looks like it’s painted.

Christa Couture: It’s actually a fabric that’s laminated. It’s a linen upholstery fabric that I found in this ritzy furniture store and I really loved the design. I had seen hand-painted prostheses. There’s a company in London called the Alternative Limb Project that does them, and they’re very artful. I showed a picture to my clinic and asked ‘What’s the affordable version?’

BLOOM: We laminate all kinds of things here on prostheses for kids, like their favourite characters or sports teams.

I read an essay that you wrote about your children Emmet and Ford, who died. You wrote about how challenging it was to know how to respond to people when they ask you if you have kids.  

I also read a piece where you shared your favourite books on loss, and Ian Brown’s The Boy In The Moon was there. You wrote that you read it while you were at Ford’s bedside in the hospital. How did you find the courage to get pregnant after these experiences?

Christa Couture: They were such painful experiences that it took a long time to be open to trying. I knew being pregnant I would be terrified. 

Losing one child is something, but losing two doesn’t happen that often. People kept saying ‘It’s so rare,” but for me it was 100 per cent of the time. With Emmett it was because of complications of labour and with Ford, he had a rare heart defect that's not genetic. Then I met other bereaved parents at a group at Canucks Place in Vancouver, and I learned about every way that a child could die.

I knew the best-case scenario would be what I have now, which is a healthy child at home.

But I knew it would be hard because I have a disability, and because it would bring up stuff around Emmett and Ford that I probably wouldn’t have to confront if I didn’t go through another pregnancy. But I kept coming back to how much I wanted it, and I wanted so badly for it to be different. That desire overpowered the fear.

My son Ford lived most of his life in an intensive care unit. He had hypoplastic left heart syndrome. Most of his life he was in hospital, and much of that time he was intubated and had multiple surgeries. I wanted so much for this pregnancy to be okay. I don’t know how I would survive if something happened to my daughter, but we never really know what we’re capable of.

BLOOM: You said on Metro Morning that when you searched for other maternity photos of moms with disabilities online, you didn’t find them. 

Christa Couture: It was discouraging. Especially because I was considering being a single parent. There were lots of stories about single parenting, and about single moms by choice, but never did I ever see any of those people with disabilities. Even though intellectually I thought surely disabled people are parenting, when I couldn’t find them, I thought maybe this is a bad idea. Maybe they all realized it was a bad idea, and I’m fooling myself.

BLOOM: What was so interesting about your CBC piece was that you said it was the first time you’d taken your prosthesis off for a photo.

Christa Couture: That was really significant. I’d wanted to do it for a few years. I wanted to do it for myself, and to confront my conflict about it.

It felt vulnerable because my leg is scarred and it’s—whatever shape it is. I think people see my prosthesis with the flowers and hear about the micro-processor and think she’s part robot and that’s cool. They see a cyborg and think it’s edgy and a fun thing to do. I was worried in taking it off that I would lose that—that people were going to conjure more deformity or injury or a lack.

But I wanted to make it public, because any time I see someone share their difference—it doesn’t have to be a missing limb—I feel more empowered in my own difference. I knew people might do a double take, because they’ve only been fed images of certain bodies. But we need to normalize these differences.

There were two women who really inspired me to think I could do this. One is Alexis Hillyard with her cooking show Stump Kitchen. She uses her arm with a stump to clean bowls and get peanut butter out of jars. CBC Parents has created a kid-friendly version of it.

The other was Kaleigh Trace, who wrote Hot, Wet and Shaking. She was in a car accident when she was a child and had a spinal-cord injury. I loved reading about how she figured things out. She wrote about crawling around, and being so amazed when she figured out that she could carry stuff in her teeth.

It was those two women who made me believe that maybe I could see myself as someone cool.

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Putting autism risks in context

By Louise Kinross

Sigh.

It’s too bad this illustration that ran with a piece in the New York Times' Motherlode column about antidepressant use during pregnancy and risk of autism didn’t have a bubble beside it that read: “My baby has almost a 99 per cent chance of not having autism.”

Because that’s what the Canadian study found.

But the way most news stories are reporting it, you might come away only with this stat in your head: antidepressant use in pregnancy is associated with an 87 per cent increased risk of autism in children.

It is. But the baseline rate of autism is about 1.1 per cent. And the rate of autism in the children of moms taking antidepressants was still less than 2 per cent.

According to the March of Dimes, a woman has a 3 per cent chance of having a child with a birth defect. This means that the risk of having a child with any birth defect when the mom doesn't use antidepressants is higher than the increased risk for autism suggested by antidepressant use in this study. 

Only CBC seemed to get it right with this lead: "Taking antidepressants during pregnancy may slightly increase the risk of having a child with autism, but the chances of having a baby without the disorder are still about 98.8 per cent, new Canadian research suggests."

The CBC piece, which includes comment from Holland Bloorview neurologist and autism researcher Evdokia Anagnostou, explains why the study’s findings are more complicated than they initially appear.

You may find this piece we did earlier this year helpful: Making sense of autism risks.

Illustration by Allison Steen, reprint from the New York Times.

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The blame game

By Louise Kinross

This morning I woke up with a sense of dread. My chest felt like an aching black bruise.

I'd read this piece in The New York Times Magazine about pregnant women and anti-depressants last night. 

Somewhere between my reading and the hours I'd spent asleep a thought had taken root in my mind: Maybe I caused my son's genetic condition. And now I was gripped with terror.

I had to get up and reread this piece I wrote a few years ago, about how parents tend to fall down a rabbit hole of "why" when their child is born with a disability. And how we're determined to find a storyline, or cause and effect, that starts with something we as parents did wrong, even if it doesn't make sense.

I had to remind myself that my son's genetic condition happened at conception, not because I was on a low dose of Prozac while pregnant (to keep severe, recurrent depression at bay).

Thankfully, over the years I'd had contact with Dan Wells, a University of Houston scientist who'd isolated one of the genes affected in Ben's syndrome, and he'd explained how the random deletion occurred. 

The most likely reason was something called "unequal crossing over." When my husband's chromosome eight exchanged parts with my chromosome eight, to ensure more genetic diversity, a tiny piece was left out. He likened it to a green ribbon and a yellow ribbon binding together to become a 150-inch green and yellow ribbon. But two inches were cut out in the middle and the ends reattached. Chromosome eight has about 150 million genetic letters and my son's is missing about two million. "There are some places in the genome where you could cut out two million letters and it would have an almost unnoticeable effect," he told me.

The cause of my son's genetic condition, Dan said, was random and couldn't be linked to an identifiable cause. And then I read a study showing that the error was more likely to occur in the sperm than the egg, anyway.

"There's nothing you could do to reduce unequal crossing over," Dan said. 

So how is it that 21 years later I could be hit with such a massive sense of guilt? 

We know from the March of Dimes that the cause of up to 70 per cent of birth defects is unknown. It follows that in most cases a woman can't control whether her baby is born with a disability. But this isn't a storyline we're comfortable with as a culture.

This paragraph from Andrew Solomon's New York Time piece resonated: "We have defined pregnancy as a universal Lent in which a thousand talismanic things must be forsaken for the health of the developing child. The conventional wisdom in the United States is that women should not sip half a glass of wine during pregnancy, or do the wrong exercise or take prescription medication of any kind. Some women find these relinquishments reassuring; they support an illusion that the mother's behaviour can guarantee a healthy baby."

And the corollary is that if your child is born with a disability, you did something wrong. 

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Letting in the light

This piece made me tear up, reminding me of what it feels like to give birth to a healthy child while caring for your firstborn with a random genetic condition. It's hard to make room for "normal" parenting with number two, emotionally and practically, but so worth it. Thanks Jennifer! Louise  

By Jennifer Philp Zakic

It takes most people a few minutes of conversation before they realize my giant stroller is actually holding two children. My older son, Branko (above left), is always in the front, and he’s the one people tend to stare at. I’m perfectly okay with that, because I would also probably stare at a four-year-old attached to an oxygen tank.

If I’m talking to a stranger, I like to choose a perfect moment to reveal my 11-month-old daughter (right), informing them that there is, in fact, a baby girl tucked away in there. Ta-da! I love pretending that it’s really no big deal, like getting them out of the house safely was just so easy and natural and why would it be any different for me?

Of course, it’s not easy. It’s never easy, but I’ve come to redefine my definition of “easy” over the past year.

When I first discovered I was pregnant with my second child, Nina, life was slightly less complicated. We were aware that Branko had a genetic bone condition, but it hadn't quite manifested itself yet. He had only broken one bone so far. He hadn’t been intubated yet. He hadn’t yet been prescribed supplemental oxygen. We hadn't even accepted “special needs” into our lexicon of medical terms.

At first, I was happy. The pregnancy had a normalizing effect on me. The mammoth amount of energy I used to invest in worrying about Branko—his acute health, his long-term happiness, whether he would eat dinner that night—was quickly diverted into thinking about the new baby. Would she be as funny as he was? Would I be blessed this time around with a sleepy, snuggly, chubby newborn?

As the pregnancy progressed, Branko’s health slowly declined, culminating with a cardiac arrest when I was about five months pregnant.

During the hardest moments, I would forget about Nina. I was so consumed with all the negative thoughts—ones that every parent who has ever spent time in a children’s ICU has conjured. These dark thoughts would quickly fade away for a moment or two whenever I touched my belly. My daughter. I liked that someone was with me at all times.

I worried about the effect this would have on her. I was sleeping very little, eating whenever I remembered, and I would jump about seven feet whenever my phone rang. Once we were out of the ICU, Branko insisted on being held exclusively in one position: his bum on my baby bump, his head on my shoulder. Any attempt to change this position was met with crying, labored breathing, alarms going off, and nurses rushing into the room.

I remember a nurse who casually asked, “He’s not sitting on your baby, is he?” I lied to her, of course, the same way that I would lie to my husband about how much I had eaten that day.

I lied because I had started feeling guilty. I wanted to be pregnant, but I also wanted everything to be perfect, or at least, moderately okay. I was hardly able to take care of myself, and now, I was in the process of squishing a brand new baby's head. I really hoped she was okay, but at that point, I would have done anything to make my sick son feel even the slightest bit better.

In addition to my guilt, there was the pernicious elephant in the room, its presence magnified every time a doctor glanced at my stomach. A handful of people asked if I had genetic testing, and if so, did I get the amnio? Most asked out of concern, a handful asked with the faintest flicker of discernment, an expression that would come and go so quickly I could almost ignore it. I would usually rise to the occasion and offer the explanation that his mutation was “de novo” or spontaneous. As in, very random and not inherited, thank you very much. Can I offer any other non-relevant information on the health of my children?

When I told Branko's pediatrician I was pregnant, I was expecting the same sort of response. She instead provided something unexpected: Lightning doesn't strike twice.

I tossed and turned over this statement for days.

Lightning doesn't strike twice.

I wanted to take comfort in this, and I tried my best, but I couldn’t get over the fact that lightning, or in our case, a random genetic mutation, could absolutely strike twice. In fact, it could strike over 2 trillion times, one for each cell in the human body. Was I an irresponsible, misguided fool for simply believing that I could be one of those other parents, the ones who have babies with arms and legs that move properly, who have lungs that work, who have voices that aren't diminished by their lack of breath? At this point, the word luck wasn’t in our vocabulary any more. It was hard to stay positive.

I wanted so badly for everything to stand still, especially when it became time to think about the future. It was hard to dig out Branko’s old newborn clothing, so I simply chose not to do it. I was like a teenager hiding an assignment in the bottom of my knapsack to temporarily avoid it. I couldn’t even imagine having to leave Branko for a few hours to—you know—actually give birth to this baby.

With the days leading up to Branko’s birth, I tried all the tricks to make him arrive sooner. With Nina, I did all those things, but in reverse. I tried to keep her in there, safe and sound, as long as I possibly could, meticulously avoiding long walks, spicy food, and pineapple. My midwife was getting frustrated. She kept hilariously telling me to “relax,” even offering to induce any time at my request. But that was unnecessary. The labour was short and sweet and to the point, and we arrived back at the house just as Branko was finishing breakfast. He never knew we were gone.

Nina is now almost a year old, and she does not have a squished brain. She makes Branko—and everyone—absolutely and purely happy. I can't believe I was afraid to meet her.

Watching her over this past year has been bittersweet. She’s so incredibly normal; it’s both overwhelming and unfamiliar to me. I try to avoid keeping a mental list of some of the things she can do that Branko still can’t: pull her own socks off, hold a sippy cup with one hand, move from sitting to lying without heavy breathing or floppiness. It’s really hard not to compare, but I’m also thankful that I’m now the type of parent who wants to crack open the champagne whenever my baby throws toys across the room.

I don't believe that Branko came into our world for a reason. I don't believe that we were chosen for him. We aren’t “special,” and for the most part, this disease he has ravaging his body is no gift. It just happened, the way some people get sick and some people just don't. But I believe Nina gave us exactly what we needed during a very sad time. She cries along with him when he gets a needle; she makes him smile when no one else can. I don't say much about Nina, and I don't often brag about her. I like to think of her as that bit of perpetual light in our darkness. I like to think that she somehow provided that warm, comfy seat for Branko on purpose. I think that part was meant to be. 

Please follow Jennifer on her blog Branko Has Funny Bones.

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What is 'progress' in prenatal testing?

By Louise Kinross

Yesterday I was contacted by a researcher at Duke University who wanted to interview me about a new blood test that can detect micro-deletions like my son’s genetic condition—Langer-Giedion Syndrome—as early as 10 weeks into a pregnancy.

I’ve written about the issues I have with prenatal testing: that it’s increasingly viewed as a standard of medical care and social responsibility, rather than a woman’s choice, and that when a prenatal diagnosis is made, a clinical description isn't balanced with information from families raising children with the condition or affected adults.

In addition, information is often presented in a value-laden way. For example, I’ve been on the receiving end of obstetricians and genetics counsellors who talk about “perfect” babies and “abnormal” babies, and about a “burden you’ll live with for the rest of your life” during what is supposed to be neutral counselling.

It's also quite possible that the clinician a parent speaks with during genetics counselling has zero life experience with disability—kind of like talking to a car salesman about a car he's never driven. Instead, it’s more likely that the clinician views genetic disability as a preventable, costly medical error.

The Duke researcher sent me a link to Sequenom Laboratories’ press release.

It reports that the company will be able to identify three new micro-deletions—including Langer-Giedion Syndrome—as part of its Materni21 PLUS test. Although this blood test already detects a handful of micro-deletions, it’s named for its ability to detect Trisomy 21, or Down syndrome.

There’s a quote from the head of maternal-fetal medicine at Cleveland Clinic saying the test “has helped change how we treat our prenatal patients.” However, there isn’t any explanation as to what this change is. The doctor does say he can now provide patients with results as early as 10 weeks into the pregnancy.

Does counselling for a genetic disability at 10 weeks into a pregnancy differ in any way from that at 16 weeks? If so, what are those differences?

As the testing for micro-deletions is expanded, how is the clinician’s real-life understanding of these conditions enlarged to ensure prospective parents get balanced and rich information?

What are clinicians doing to reach out to families affected by micro-deletions so they can provide more than a clinical description and perhaps even a referral to a support group?

Like other deletions, Langer-Giedion Syndrome affects people differently. The MaterniT21 PLUS will not give prospective parents any insight into whether their child will be mildly, or more severely, affected. My son will not go to university, but some with the disorder do. Prospective parents will have a diagnosis, but no clear sense of impact. Quite the emotional quandary, I would imagine, and not the precise, scientific "genetic analysis solution" that the company refers to.

To me, the technical side of prenatal testing is the easy part. The information and counselling that comes after a diagnosis is the messy part, the part that needs critical scientific attention and study and evaluation.

Sequenom says that it’s “committed to improving healthcare” but it doesn’t mention anything about how the results of its test are used, or how test results translate into counselling that prospective parents find useful, supportive and neutral.

Oddly, Sequenom’s news release doesn’t mention a thing about termination, yet I imagine most positive Materni21 test results lead to termination. Why is this not openly discussed in its promotional materials?

Again, I think it's easier to talk about “laboratory-developed”  tests and “revolutionary genomic and genetic analysis solutions” rather than the real-life decisions of a woman who may know little about disability or be ambivalent about using termination as a prevention measure.

Note that on July 29 Sequenom reported revenues of $39.8 million for the second quarter of 2014, an increase of 62 per cent over the same period last year.

There’s lots of money to be made in increasing the number of women who take the Materni21 PLUS.

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Making sense of autism risks

After my son was born with a random genetic change that my husband and I don't carry, I was told by geneticists that if I was to get pregnant again, the chance of having a second child with this condition was less than 1 per cent.

The genetics counsellor described those odds this way: "You have EVERY chance of having a perfect baby next time!"

I was given the green light for more kids.

So I was surprised to read a story about a Swedish study in the New York Times Motherlode column yesterday that suggests pregnant women shouldn't take antidepressants because they may increase the risk of autism without intellectual disability in a child by .6 per cent.

The baseline risk for having a child with autism is about 1.1 per cent (1 in 88 children), so this would bring the overall risk to under 2 per cent.

In other words, using antidepressants while pregnant may increase the risk of having a child with autism without intellectual disability by less than 1 per cent—the same odds I was given of having a second child with a rare, spontaneous genetic change.

The same risk deemed by my geneticists to be so small that it shouldn't be a factor in my decision to have more children.

While I had a greater than 99 per cent chance of having a second healthy baby without my son's genetic condition, this Swedish study suggests women using antidepressants have a greater than 98 per cent chance of having a healthy baby without autism.

The hitch in the study was that a causal link wasn't found between antidepressant use and the .6 per cent increase in risk of having a child with autism. The researchers said the tiny increase in risk could be caused by the antidepressants—or it could be caused by the depression itself.

Kind of a big question mark as to what the study means!

Yet the headline on the Motherlode piece reads Study Links Autism with Antidepressant Use During Pregnancy and the story doesn't mention the size of the possible increase in risk (.6 per cent).

Many readers commenting on the article imply that antidepressants have been found to be a major risk factor for autism.

They haven't!

According to the March of Dimes, a woman has a 3 per cent chance of having a child with a birth defect.

This means that the risk of having a child with any birth defect when the mom doesn't use antidepressants is higher than the increased risk for autism suggested by antidepressant use in this study.

The Swedish study "is very important in highlighting which biological pathways may be involved in how autism develops, but the information isn't translatable to counselling an individual woman who wants to have a baby because the additional risk is too small," says Evdokia Anagnostou, a child neurologist who leads a clinical research program in autism at Holland Bloorview.

"The study is helpful in explaining the increase in autism rates in a huge population, but it doesn't identify antidepressant use as a major risk factor in individual cases," Evdokia says.

She likens it to a study last year that found that men in their 40s are more likely than those in their 20s to have a child with autism, but the overall risk was still low, at 2 per cent. Does this mean mean older men should stop having children?

“If someone asks me ‘Do you think I should not have a baby because I’m 40?’ I would say you absolutely should have a baby. The majority of babies born to 40-year-olds are perfectly healthy.”

Evdokia emphasized that autism is “a multi-factorial disease that can’t be prevented at this point. Paternal age can now be seen as one of many contributors to risk"—but father's age and antidepressant use in moms don't explain the majority of risk.

“There are many, many reasons why you may end up with a child with autism and in these cases the child gets this extra little hit. But most of the time a child needs to have many hits to get autism.”

Other factors that increase risk include a parent's genetic makeup, such as having a sibling with autism or family members with autoimmune or mood disorders; the fetal environment, including infections during pregnancy and exposure to fertility and other drugs; and possibly some environmental toxins.

When considering treatment of pregnant women with depression, it's important to remember that untreated depression can have negative impacts on children. In this 2013 study, children of depressed moms who weren't treated had behavioural problems in early childhood, while those whose moms took antidepressants didn't.

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Selective abortion: A choice or a social expectation?

When I was pregnant with my second child I had an amniocentesis—not because I wanted one or knew how I would act on the information—but because I feared people would judge me if my second child was born with disabilities.

I feared people would say I'd chosen to have a child with disability, rather than that I'd chosen not to abort.

The testing was recommended because my first child had a random genetic condition. "I understand why you'd want to do everything in your power to prevent having a second abnormal baby," the obstetrician in the testing clinic said dryly.

I remained silent, not wishing to discuss my views on disability prevention or my son. The amnio came back normal and I didn't have to wrestle with my views on prenatal testing and abortion.

A week ago Andrew Solomon had an interesting piece in The New Yorker called Medical Progress, Social Progress, and Legal Regression.

While arguing against North Dakota's new laws that ban abortions for conditions like Down syndrome or spina bifida, he questions how informed decisions are when a woman doesn't have information about families raising children with the same condition her fetus has.

"Women often terminate a pregnancy without knowing what life would be like with and for an anomalous child," he writes. "It is worth publicizing the satisfaction that the experience may entail, so that the pro-choice movement becomes the pro-informed-choice movement."

Parents-to-be often "confuse how it feels to lose an ability (to be suddenly bereft of hearing) with how it feels to live healthily with a variant body (to be deaf all your life)," he writes. "Further, they confuse their own discomfort with their child’s."

Solomon points to a fascinating study that shows how people judge women who carry a baby with an identified disability to term or refuse prenatal testing. 

The survey asked 281 staff at a Canadian university and 341 Canadian doctors who work in obstetrics to rate three scenarios in which a woman's child is born with a disability. The first woman chose not to have testing, against the advice of her doctor. The second chose to continue her pregnancy after testing identified a disability. The third was not offered testing by her doctor.

Participants were asked to rate how responsible each woman was for the disabled child and how much to blame. They also had to score how much each woman deserved sympathy, and how deserving each was of social services and financial aid to help her care for the child.

"Numerous examinations of attributions for outcomes have concluded that individuals are held more to blame for a negative event when it is perceived as being under their control or preventable," the researcher notes.

Both the university community and the doctors rated the woman who chose not to abort her disabled fetus and the woman who refused prenatal testing as more responsible, more to blame, less deserving of sympathy, and less deserving of social and financial support for their child's care than the woman who wasn't offered testing.

"This examination is of pragmatic relevance because of a growing sentiment that prenatal testing can and should be used to meet public economic goals by reducing the financial burden that disability places on the medical and social welfare systems, and that women who do not use it to prevent the birth of a disabled child should be held financially or legally accountable."

The key phrase here is "prevent the birth of a disabled child." Abortion doesn't prevent disability. It prevents the birth of a child who has a disability. They are two quite different things. 

I was surprised to see that this study was 10 years old. I think public opinion about women who don't abort for fetal disability has hardened since then.

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Why blame Mom?

Historically it's been mothers who are blamed when children are born with disabilities. In earlier times we were thought to have sinned, while today the belief that women can prevent birth defects, by what we do or don't do during pregnancy, is rampant. And so is its unfortunate corollary: that women who give birth to a child with a disability caused it.

Public health messages that suggest mothers can prevent most defects by taking care of themselves during pregnancy abound.

According to the U.S Department of Health and Human Services website, a healthy baby is the outcome of these five steps:

Five Ways To Have A Healthy Pregnancy and Baby

1. See a doctor or other health-care provider from the start of your pregnancy.

2. Don't drink alcohol, smoke cigarettes or take drugs.

3. Eat healthy foods, including fruits, vegetables, low-fat milk, eggs, cheese and grains.

4. Take good care of your health and exercise sensibly.

5. Have your baby checked by a doctor or health-care provider right after birth and throughout childhood.

More current information (including the importance of folic acid and risks associated with obesity and diabetes) is listed at the Centers for Disease Prevention and Control. 

Yet we know from the March of Dimes that the cause of most birth defects—up to 70 per cent—is unknown. It follows that in most cases a woman can't control whether her baby is born with or without a disability (unless she aborts a child diagnosed prenatally). I bet you most mothers of children with disabilities followed the five tips above to the letter. 

So why are we led to believe our baby's health rests solely in our hands?

Consider this Healthy Babies Are Worth The Wait t-shirt I found as part of the Prematurity Campaign on the March of Dimes website.

What is the meaning of this, I thought? Women don't choose to have premature babies because they're impatient. Most preterm labour, in fact, can't be prevented. "Our analysis shows that the current potential for preterm birth prevention is shockingly small," said Dr. Joy Lawn of Save the Children, who led the first multi-country study looking at the causes of premature births and how to reduce them, published in The Lancet last November. So why suggest that women can control premature births?

Apparently the Healthy Babies Are Worth The Wait initiative targets women who consider scheduling a C-section before 39 weeks. "If possible, it's best to stay pregnant for at least 39 weeks," says the article.

This campaign won't touch the rate of premature births, which declined in only three countries of 65 from 1990 to 2010 according to The Lancet study. That's because asking your obstetrician for an early C-section isn't a major contributing factor.

But how will a mom of a preemie with disabilities feel when she reads that t-shirt message? What if a sibling of the child with disability reads the shirt and asks Mom why she didn't wait?

Yesterday I read about a new March of Dimes book called Healthy Mom, Healthy Baby in this New York Times' article: Too Many Pills in Pregnancy.

According to the Amazon description, Healthy Mom, Healthy Baby empowers "mothers-to-be... with more information and positive steps than have ever been available before to ensure both a healthy pregnancy and a healthy, happy newborn."

What?

If most causes of birth defects are unknown, "positive steps" taken in pregnancy can't guarantee a healthy baby.

The book is mentioned in an article in which the American Food and Drug Association estimates that at least 10 percent of birth defects result from medications taken during pregnancy. According to the article, a recent study shows inaccuracies in online information about which drugs are safe, which means women who choose the Internet over a doctor's consult may receive faulty advice.

That's critical information for women, and I can't imagine anyone arguing that we shouldn't carefully weigh the risks and benefits of medication use with informed doctors.

But don't suggest that healthy moms who do all the right things during pregnancy have healthy babies!

Titles like Healthy Mom, Healthy Baby feed this magical thinking. And they reinforce the popular fallacy that mothers of disabled children did something wrong to cause their child's condition.

In a recent piece called Pregnancy and blame on Conversations, an Australian news site, author Kathryn Knight writes about how simplistic public health messages about birth-defect prevention diffuse into the culture. We all know parents who've been been the recipient—at school or on the playground—of judgemental questions like: What went wrong? Didn't you get the test? Why didn't you terminate?

And that line of questioning isn't limited to an uninformed public.

I have a son with a rare genetic condition. The way a researcher described it, when my chromosome 8—let's call it a green ribbon—exchanged parts with my husband's chromosome 8, a red ribbon, to produce a striped red-and-green ribbon, a minute piece was left out. That random error at conception caused his disabilities.

Yet to this day (he's 18) I'm asked by health providers for a detailed pregnancy and delivery history. "But the genetic condition occurred at conception," I will implore, as the 20 questions about my pregnancy are trotted out. "It had ALREADY happened!"

A blog in Three To Be's Parent Advocacy Link yesterday had a similar theme: 

"When Maclain was born, I blamed myself very heavily for a long time," writes Brenda Ferland Agnew. "It was my fault that one of my twins had died. I should have known sooner that something was wrong. I should have gotten to the hospital sooner. If I had done things differently both of my babies would have survived, and Maclain wouldn’t have been born so early. I could have prevented his brain damage if I had done something more. I carried this with me everywhere I went, with every move I made. It ate away at me, and kept me awake at night...

"A year and a half after his birth, we received confirmation that Maclain’s brain damage was caused by a condition known as Kernicterus. He was not treated for jaundice, and this was what caused his cerebral palsy and his hearing loss. We had suspected it for a few months, and after a visit to our neurologist, we got a letter that ruled out his brain damage having been a result of any intrauterine insults, or because of the Twin to Twin Transfusion...

"I was so angry that I had been made to feel by all the medical professionals, that my son had disabilites because of something I had done wrong."

We have less control over a myriad of things that can happen to a fetus than books like Healthy Mom, Healthy Baby—or Five Ways To Have a Healthy Baby tip sheets—would have us believe.

Let's speak the truth about how much we don't know about the causes of childhood disability and, more importantly, how to prevent it. Let's tell the truth about how Healthy Mom can just as easily produce Unhealthy Baby, or Healthy Baby with a Disability (because disability is not necessarily synonymous with poor health!).

Every mom wants what's best for her baby. In most cases when congenital problems are found, it's not because of something we "did."

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'Perfect' or 'abnormal:' Which one is your baby?

By Louise Kinross

It all began so simply.

I was a couple of months pregnant with my first child. My obstetrician asked if I wanted maternal serum screening. I knew this blood test (called alpha-fetoprotein or AFP for short) detected risk for Down syndrome in a fetus. I also knew it was known for false-positives.

I had never seriously thought about prenatal genetic testing. "Can you ask me again so I can think about it?" I said.

A couple of weeks later I went for routine blood tests and was surprised to see the AFP ticked off on the requisition.

Why hadn't the doctor asked me if I wanted this test?

I was angry.

But I was a healthy 30-year-old woman and I was here at the lab giving blood anyway. What could it hurt?

Two weeks went by and my sister-in-law—a physician—reassured me that if there was a problem I would have heard by now.

The next day I picked up a voice mail from my doctor: “You have an increased risk of having a Down syndrome baby and need to get down to the hospital tomorrow for counselling."

My heart sped up. Was something wrong with my baby?

D'Arcy and I went to the hospital clinic. The genetics counsellor looked fresh out of college, with a large textbook open on her desk. She said I had an elevated level of AFP which gave me a 1 in 200 chance of having a child with Down syndrome, instead of the regular odds of 1 in 400 for a woman my age.

The numbers meant nothing to me.

I could have an amniocentesis to confirm or rule out the diagnosis, the counsellor said—but the procedure came with a 1 in 200 risk of miscarrying the baby.

I had the same odds of having a baby with Down syndrome as losing the baby from the amnio test! I didn't want to lose this baby, which was already moving inside me.

The “counsellor” part of genetics counsellor proved a misnomer. There was no discussion about our values, what parenting meant to us, or how we felt about screening for and aborting a fetus with genetic disabilities. Other than a recounting of the dry statistics, there was no discussion at all.

If I wanted the amnio, I had to have it the next day, the counsellor said; I was at the tail end of when they conducted terminations.

D'Arcy and I wanted this baby.

How would I make a decision? I couldn't make a decision, I told the counsellor.

She gave us two pamphlets. One had a scant, two-paragraph description of Down syndrome on it. It described the condition in stark medical terms, listing one "defect" after another. It ended with an odd sentence about how Down syndrome babies could also be happy and lovable—as if clarification was needed that these children were, in fact, human.

The other—a pink brochure—was about termination. What exactly was it? It was a “mini-labour,” the pamphlet said, making it sound as inconsequential as a manicure. Nowhere on the pamphlet did it describe termination as abortion, and nowhere did it state the method at 16 weeks.

I didn't know it at the time, but there's nothing “mini” about a termination of a four-month-old fetus. The fetus' heartbeat is stopped by injection, regular labour is induced and can go on for hours, and a fully-formed, dead fetus is delivered (parents often have hand and footprints taken as a memento).

When I couldn't make a decision about whether to have the amnio test, the genetics counsellor suggested I speak to an obstetrician who would counsel me.

“Look,” said the grey-haired man in a white coat. “If you have an (amnio-induced) miscarriage you'll be depressed, but then you'll get pregnant again and have a normal baby. But,” he began to squawk, eyes popping and mouth twisting, “if you have a Down syndrome baby, that'll be a burden you live with for the rest of your life!”

I cowered in my chair like a child.

We left the hospital in a vacuum filled by the two-paragraph medical description of Down syndrome, the obstetrician's tirade, and the knowledge that the deadline for the amnio loomed the next day.

I didn't search out more information when we got home. I was full of moral angst and indecision but it didn't seem to be the kind of thing you talked about. Oddly, I didn't jump on the computer and research everything there was to know about Down syndrome.

I had little firsthand experience with disability to draw on. Kids with intellectual disabilities didn't go to neighbourhood schools when I grew up. I remembered Bobby, the oldest of six children in a family that lived on a street behind our house. Bobby had Down syndrome and was dropped off in a station wagon from a sheltered workshop in the afternoon. He always ran, head down, into the house. Even as a child, I sensed that his dropped head signalled something bad, something sad or shameful.

I had been brought up with a sense of the value of all human life and with a wariness of medical intervention.

However, it appeared that this was an outdated way of thinking. My therapist told me she would abort if she was carrying a child with Down syndrome. “Life is hard enough when you have your wits about you,” she said.

Of course at this point I hoped it was all a mistake and I would never be faced with making a decision.

I had the test, not having a clue what I would do if it came back positive.

For the next week, I was gripped with anxiety. I would sit, holding my belly, knowing that at a gut level, the idea of aborting a child with a genetic flaw wasn't compatible with my values. It didn't feel right. Every fibre of my body was opposed to judging the life inside of me as unacceptable and needing to be expelled. If I couldn't accept this baby—a part of me, and entrusted to my protection—how could I accept myself?

But the doctor's voice echoed in my mind: the responsible thing to do was to abort this "burden." I pictured myself walking into the hospital, suitcase in hand, emotions shut down.

My husband D'Arcy said he would support whatever I decided, but mainly he chose to believe that everything would come back fine.

And it did.

We were elated to receive a phone call that the amnio result was in and it was “normal.”

I didn't realize that the amnio, at the time, only tested for a certain number of major genetic conditions. Because the limits of the test hadn't been explained to me, I interpreted the result of normal—which also wasn't explained to me—to mean that my child was normal (whatever that means!). With the full information that the amnio doesn't test for a host of rare genetic conditions, I don't know if I would have taken it.

Having received a clean bill of health from the gold standard of prenatal testing, it was a surprise when we were told shortly after Ben's birth that he had a constellation of symptoms that indicated a chromosome problem.

"But I had a normal amnio?" I questioned. 'How could that be?"

I soon learned that I wasn't the only one with the perception that amniocentesis was infallible. Professionals and lay folk alike were befuddled that I could have both a normal amnio and a child with a genetic condition.

D'Arcy and I had always planned on having at least three children, and we wanted them to be close in age.

When Ben was about seven months old, I began thinking about when I would try to get pregnant again—in the new year, I thought, when Ben was about a year old.

I went to see my family doctor and was surprised when she tried to talk me out of getting pregnant again so soon. I interpreted her response as a negative reflection on Ben: why would we want to take on another child when we already had our hands full with a child with a genetic diagnosis?

That got my back up.

I didn't want Ben's condition to put limits on our dreams. I didn't want to make having another child "conditional” on Ben's progress. That wouldn't be fair to him or to us.

But the thought of pregnancy was now filled with anxiety and trepidation: Would our second child be born with medical problems or disabilities? What if our second child had Langer-Giedion Syndrome?

We were told the likelihood was less than 1 per cent because Ben's genetic deletion was random or spontaneous and not related to a change D'Arcy and I carried. In fact, shortly after Ben's disorder was diagnosed, a genetics counsellor enthused: “You have every chance of having a perfect baby—next time!”

But numbers meant nothing to us.

One day while I was agonizing over this, D'Arcy turned to me and said: "Louise, I love Ben. If we were to have another Ben, I would be ecstatic."

That was a turning point.

I became pregnant again when Ben was 18 months old, at age 31. Amnio wasn't available to moms of my age, but because we already had one child with a genetic condition, it was offered.

To say I was conflicted was an understatement.

The first time around it plagued my pregnancy with fear. Now, as the mother of a dearly loved child with a genetic condition, I couldn't imagine aborting a child with a similar condition. What would that say about the value I placed on my son Ben's life? How would I ever look at Ben again, knowing I had stopped the heartbeat of another fetus like him—because it didn't "measure up."

On the other hand, the fact that we were being offered the testing seemed to imply it was the medically appropriate or responsible thing to do. And an unfortunate corollary of that, which soon entered my mind, was that if we didn't have the testing, people would think we had 'chosen' to have a child with a disability—or that we had somehow caused the disability or failed to prevent it (even though prevention in this case meant eliminating the child): “They already have one child with disabilities. How could they have another?”

It seemed guilt would be my companion, no matter which course of action I took.

As I wrestled with whether to have the test or not, I also tried to predict what it would be like to have two children with disabilities (I've since learned that we're bad at predicting our ability to cope with a situation).

I sobbed to a friend that I didn't think I could handle the emotions of having two children with disabilities -- which I pictured as the grief, fear and anxiety associated with Ben—times 2.

But I believe it was more that I didn't think I could handle the stigma—the self-consciousness of feeling that others were looking at my kids and judging them as less than whole.

One of the greatest sorrows we experienced with Ben was others not delighting in him the way we did. A joy of parenting is seeing your child bring happiness to others: it's painful when people focus on the disability instead and feel sorry for you.

Ironically, the obstetrician who made his bias to terminate clear when I had an amnio with Ben, was the same obstetrician I was sent to for prenatal counselling with my second pregnancy.

When I appeared at his door, he looked up from my chart with annoyance and said: "Why are you here? We don't offer amniocentesis to women at age 31."

His entire demeanor softened, however, when I told him I already had a child with a genetic condition.

He paged through my chart to find the letter from my genetics counsellor outlining Ben's genetic condition and its symptoms.

Suddenly, he understood completely, he said "why you would want to do everything in your power to prevent having another abnormal baby."

We were back in the black and white land of perfect and imperfect babies, normal and abnormal babies.

The obstetrician emphatically supported my having an amniocentesis and I went along with him. I was young and lacked the confidence to do what I felt was right—regardless of what others thought.

The day of the test, I was an emotional wreck. Everything inside of me was screaming "no, no, no"— don’t touch my baby. But my fear of judgment should I not test and give birth to a child with disabilities was greater.

My first amnio with Ben had been painless. When the doctor inserted the long needle into my lower abdomen with Lucy, I felt acute, shooting pain and I struggled to lie still. How had inserting a needle into a pregnant women's stomach while you watched the baby on ultrasound—praying it wouldn’t get hit—become a normal part of pregnancy? It was so unnatural, so foreign. I felt victimized.

Prenatal testing has transformed pregnancy from a time of joy and hope to one of dread. Will your baby pass the test? The focus is on weeding out and eliminating 'wrongful' life. It's based on a belief in the power of technology to eradicate human pain—that life can be emotionally and physically pain-free if we get rid of certain health and disabling conditions. But getting rid of them doesn't mean preventing them, it means eliminating the children who carry them. And can a 'good life' be defined by health and intellect alone?

When Lucy's amnio came back “normal,” we were somewhat relieved, but it didn't quell our anxiety. We had had a normal amnio with Ben. Near the end of the pregnancy, the obstetrician said Lucy wasn't growing properly—she was smaller than expected for her age. I had to go for special high-tech ultrasounds every couple of days at the hospital. I began to fear that like Ben, Lucy had a growth problem. “Could it be a genetic condition,” I asked the obstetrician?

“No,” he said. “You had a normal amnio.”

“Exactly,” I said, reminding him that an amnio didn't detect the genetic deletion in my son.

Photo above is of Ben's feet at three days old. The geneticist thought they were unusually wrinkly and a photo of his feet—and his characteristic facial features—were ordered. Those are D'Arcy's hands holding his feet, and it makes me smile to remember that Ben had already stolen our hearts.

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