Tag Archives: genetics

An Open Letter To My Son

4 Apr

You.

Sometimes I wonder about you.

I wonder, for instance, where you came from. I understand the dry facts, of course, the complex mechanics of ovulation and ejaculation. I understand how cells divide, and then divide again, their numbers growing exponentially as seconds tick by. I know a thing or two about gametes and zygotes and embryos.

What I don’t understand is how all of that made you.

The facts of your existence seem like they would be better explained by alchemy rather than biology. We made you out of nothing, or rather, we made you out of two randomly-selected bits of genetic code that we unintentionally sent slamming into each other deep in the darkest recesses of my body. And out of those tangled strands of DNA grew you, incredible, beautiful you, with your father’s blue eyes and my heart-shaped mouth.

It feels more like magic than science, really.

I don’t know that I believe in souls, but I do know that I have a hard time wrapping my head around the fact that there is now an entirely new, unique human being on this planet who has never been here before.

And I wonder how I managed to carry you for eight months inside of me without somehow fucking it up. I mean, this is me we’re talking about here – the person who is totally incompetent when it comes to the most mundane, run-of-the-mill tasks. I can’t swim or drive a car or even whistle properly, for God’s sake, but somehow I made an entire kid from scratch? How does that even work?

I’ve spent two years watching you unfold from a scrunched up, red-faced, newborn cipher into something that’s starting to bear a remarkable resemblance to a human being. You walk, you talk, you have feelings. You have preferences, even, very specific likes and dislikes that seem totally arbitrary to me. You have a sense of humour. You make jokes, on purpose, just to make me laugh.

You tell me that you love me and I wonder what you think that word means. At thirty, I’m still getting a handle on all of the possible interpretations of love, all of the implications and connotations that it might bring with it. I’ve learned to use the word cautiously, sparingly, oh-so-carefully, because those four innocent letters can be so incredibly loaded with meaning. But you, what do you know about meaning? You don’t know anything, or at least certainly not enough to overthink things the way I do; you just love me.

And oh God I love you so much. So fucking much.

And I wonder, how on earth do I protect you? How do I keep you safe?

Like some poor, naïve fairytale mother, I’m trying to help you navigate your way through a forest that’s by turns enchanted and haunted. The path is familiar, as if I walked it once years ago, but different, too; overgrown and seemingly impassable in some parts, and unexpectedly clear in others. And as we pick our way through the undergrowth, as we do our best not to trip on twisted roots and sharp stones, I try to remember the lessons I’ve learned from all folktales I used to know.

For example, I won’t make the mistake that Sleeping Beauty’s parents did when sending out invitations to her christening. Unlike them, I’ll be sure to invite the dark fairy godmothers as well as the good ones, because I know that they’ll come anyway, slipping in through back doors and lurking in corners where you least expect them. I’ll let them give you their murky gifts in broad daylight, so that I can look them in the eye while they do so. Then I’ll smile and thank them, recognizing that I have to let life give you the bad as well as the good.

And when I send you out into the world alone, as I know that I will someday have to, I’ll give you something more substantial than bread crumbs with which to find your way back home.

And I won’t make you go to your grandmother’s house alone until I can be sure that you can tell the difference between an old woman and a wolf in a nightgown.

I look at you and wonder what will happen once I’m not there to navigate this forest path with you. I wonder what trolls and goblins and clever tricksters you’ll have to face. Will your monsters look anything like mine?

I wonder what else I’ve passed on to you, along with the shape of my eyes, my love of books, and my brilliantly trenchant wit. What ticking little genetic time bombs lie dormant inside of you? My anxiety? My depression? The weird nail on my right big toe that turns black and falls off every winter?

If and when these things surface, what will I do?

Will I even be able to help you?

And how will I teach you about a world in which you, a white, middle class boy, will have more privilege than most?

And how do I teach you that it’s your job, among other things, to give a hand up to those less privileged than you, when everything else around you will seem to be telling you to grab whatever you can and run with it?

And how do I teach you that you’re allowed to cry, that you’re allowed to feel afraid or weak or inadequate?

How I do I help you decode all of the toxic messages that the world will try to shove down your throat?

What I want for you most of all is a place of safety. I want our home to be a place where you feel safe making mistakes, a place where you have a healthy respect for but never a fear of consequences. I want you to feel safe being yourself, whoever that is. And above all, when you’re out there, alone and afraid, I want you to know that you always have a safe place to come back to.

I will always love you, no matter what.

Photo by Diana Nazareth http://www.diananazareth.com

Photo by Diana Nazareth http://www.diananazareth.com

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Abortion and Down Syndrome

29 Jan

First of all, let’s get one thing straight: I am not in the business of judging women for when and why they choose to abort. If you’re only going to take one thing away from my blog ever, please let it be that.

Now that we’ve got that out of the way, I have something that I want to talk about.

I want to talk about the fact that, according to some studies, an estimated 90% of fetuses that receive a prenatal diagnosis of Down Syndrome are aborted.

It should be noted that the actual numbers may be less than that, and some studies show a decrease in recent year in the number of pregnancies terminated after a prenatal Down Syndrome diagnosis. We’ll go with that 90% figure, though, because it seems to be fairly accurate and is the one that I see pop up the most often.

It should also be noted that this figure should not be misinterpreted as “90% of fetuses with Down Syndrome are aborted.” That statement is patently untrue. For one thing, many people opt out of prenatal genetic testing, or do not have access to it. So while it’s a fact that thousands of fetuses are aborted after a diagnosis of Down Syndrome, it should also be noted that there are still thousands of babies with Down Syndrome being born in North America every year.

All of that being said, that 90% is not an insignificant number. And we have to look at what that means, both in terms of the pro-choice movement, and in terms of the stigma surrounding Down Syndrome.

With regards to the pro-choice movement, there’s been talk recently (in the US, at least) of enacting a ban on abortions due to fetal abnormalities. A bill was introduced in North Dakota last week that, if passed, would charge doctors who perform abortions for reasons of sex selection or genetic abnormalities with a Class A misdemeanour, which could potentially result in a year of prison time. Indiana is trying to pass a bill that would charge doctors who perform abortions in cases of genetic abnormalities with a Class C felony, which can result in up to 8 years of prison.

Needless to say, I think these laws are a terrible idea, for a number of reasons.

First of all, as previously noted, I don’t think that banning abortion does much good anyway, as studies have shown that it does not affect the abortion rate.

Second of all, I never, ever think that giving women less information or less choices is the way to go. I think that women should be given all the information available about their fetus. I think that women should always have the option to abort that fetus, even if their reason is the sex of the fetus or because the fetus has Down Syndrome. And I think that limiting abortions because the reason for one particular abortion makes us uncomfortable is a slippery slope.

Thirdly, I think that these laws would be difficult, maybe even impossible to implement. Would they allow for abortions in cases where the genetic abnormality is incompatible with life? While it’s true that a doctor can diagnose genetic abnormalities with 100% accuracy given the right tests (tests like amniocentesis which, by the way, many women avoid because they carry a risk of miscarriage), no doctor can ever truly predict whether a disability or genetic disorder is incompatible with life. Does this mean that doctors will force women to continue pregnancies in cases of anencephaly, because in rare cases babies born with that condition can survive outside of the womb, albeit with absolutely no quality of life?

Finally, and most importantly, I don’t think that the fact that 90% of fetuses diagnosed with Down Syndrome are being aborted is the problem. I think that it’s a symptom of the problem, and as such, I don’t think that a ban on abortions is going to fix anything.

The really problems are stigma, lack of education and lack of resources.

We need to have doctors who are better educated about Down Syndrome, so that they can provide better information to their patients. This is especially crucial given that a new blood test is being developed that can, with 100% accuracy, predict whether or not a fetus has Down Syndrome. This is a test that can be administered by family doctors, meaning that now your general practitioner, the person who, as things stand now, has had very limited training when it comes to disabilities, will now be counselling you on whether or not to terminate your pregnancy. Many doctors will give women misinformation, or blatantly one-sided information, that will lead to the decision to abort. We need doctors who are providing the full picture, so that women can make truly informed decisions.

We need more government resources for families with children with disabilities. My mother is a social worker who works with children with disabilities, and I have heard many first-hand accounts about how little the government provides, and how incredibly financially straining it can be for a family with a child with Down Syndrome. People living with Down Syndrome can have a whole host of medical problems, sometimes spending years at a time in the hospital. And while, yes, we have socialized medicine in Canada, which means that the hospital bills will be paid (assuming that the hospitalized person is in a ward, not a private room, and excluding the cost of medication), what we often don’t take into account is the time that a parent of a child with a disability will have to take off work. Some parents even find that they are unable to work and have to care for their children full-time, or else face the idea of having their child institutionalized (this scenario is, admittedly, rare for children with Down Syndrome, but happens quite often for children with more serious disabilities or delays).

Above all, we need to work to reduce stigma. We need to find ways to teach society that a diagnosis of Down Syndrome is not the end of the world; that people with Down Syndrome can and do live long, healthy lives and contribute in many ways to the world around us. Most people with Down Syndrome are able to work outside of the home; many are able to leave their parents’ homes and go to assisted-living communities or places like the L’Arche homes. We need to have people with genetic problems and developmental disabilities become more visible in our society; why not have a character with Down Syndrome on a children’s television show? Why not feature more children with developmental delays in children’s books, or in movies? Why not include children and adults with Down Syndrome in consumer advertising campaigns, modelling for clothing companies or whatever? How are we ever going to teach society that those with disabilities are people, too, if they remain almost totally invisible?

I was speaking with a friend today about receiving a prenatal diagnosis of potential Down Syndrome (she’d had ultrasounds, but had opted not to have an amniocentesis, so doctors couldn’t say 100% whether or not her son had Down Syndrome). She said a few things that really struck me:

I remember a few weeks before his anatomy ultrasound reading a story of a mom who had a baby with Down Syndrome without any prior clues on any testing.. and I was like “oh well, what’s the big deal?” And then when everything went down for us I understood what the big deal was. It wasn’t that I didn’t want HIM, it was that everything that I wanted for him may not have been possible […] I think another factor for me was that it was like suddenly this baby that I had inside me for 20 weeks was a stranger. Because I had built up one image in my head of the perfect baby and suddenly they were someone different. Not any less perfect, but just not what I was preparing myself for, so I definitely went through a grieving period, even though I didn’t think Down Syndrome was a big deal prior to that.

Reading her comments made me tear up a little, because I think that this is something that we don’t often talk about, the idea that a diagnosis of Down Syndrome can feel like a loss. We don’t talk about the fact that the baby you’ve been envisioning all along, the baby you’ve been in love with no longer exists, and needs to be grieved. I remember that after I had my c-section and was upset about the fact that I hadn’t been able to have the natural birth that I wanted, someone told me that it was okay to grieve that birth. And hearing that helped.

And I think that in the society we live in, the society that teaches us that people with Down Syndrome are inferior, that their lives are worth less and, as such, they are to be pitied, it only makes sense that some women, as part of their grieving process for the child they thought they were carrying, will choose to abort a fetus with Down Syndrome. A diagnosis of Down Syndrome can often makes a mother feel that she might never love her child, might never want to hold them or care for them. What good will it do to force that mother to continue her pregnancy? And if you tell me that she’ll learn to love her child, that every mother automatically bonds with her child, well, you’re voicing the same anti-choice rhetoric that’s used against young or unprepared women who are facing an unplanned or unwanted pregnancy.

Banning abortions in cases of genetic abnormalities isn’t going to make people believe that those living with Down Syndrome are any more valuable, or less pitiable. Banning those abortions won’t magically make more funds or resources available to struggling families. Banning those abortions won’t make doctors any more knowledgeable about Down Syndrome or other disabilities. Banning those abortions won’t make a mother feel more capable of loving a baby with Down Syndrome. Enacting such a ban will only going mean that there are more mothers and fathers who feel lost, alone and unable to cope.

Is that really what we want?

trisomy