With the Down Syndrome community in the midst of a Twittertwister over recent comments by biologist Richard Dawkins, I guess it would be remiss of me to not make a comment on it. A few days ago this guy (apparently a well-known scientist?) tweeted, in response to somebody saying they didn’t know what they would do if they had a prenatal diagnosis, “Abort it and try again. It would be immoral to bring it into the world if you have the choice.” His later apology only made things worse. Two gems: First, “what I was saying simply follows logically from the ordinary pro-choice stance that most of us, I presume, espouse.” And then, “If your morality is based, as mine is, on a desire to increase the sum of happiness and reduce suffering, the decision to deliberately give birth to a Down’s baby, when you have the choice to abort it early in the pregnancy, might actually be immoral from the point of view of the child’s own welfare.”
I want to step aside from this for a second and talk about Leah. I’ve hoped over the past year that Leah has shaped people’s thoughts about Down Syndrome the way she has shaped ours. My hope has been that if one of our friends or community members got a prenatal diagnosis of Down Syndrome that they would remember Leah when deciding whether to proceed with the pregnancy or terminate. But then I had a horrible thought – what if all they think of is how hard it has been for us? So I want to take a moment and clarify that 1) we have not regretted keeping Leah for a single moment, and 2) most of Leah’s medical problems have been about a) her premature birth, and b) her long-gap esophageal atresia, which was the reason for the premature birth in the first place. Our experience is quite typical for a family whose child has long-gap EA, but is not typical for a family whose child has Down Syndrome. And as we have discussed before, the odds of Leah’s type of esophageal atresia occurring together with Down Syndrome are one in a million.
So please, if you ever find yourselves making a decision about what to do with a prenatal diagnosis of Down Syndrome and find yourself thinking about our experience with Leah… please think about those sassy little pigtails and the proud smile on her face when she reaches a new milestone. Think about her giggles and the look on her face when we go through the car wash (oh boy, just wait for that one). I’m not telling you what to decide, because every family needs to make the decision that is right for them – just please don’t let our story influence your decision negatively!!
Now back to the substance of what this gentleman said. If you don’t like political or philosophical discussion this is the point at which to stop reading this post. SO, here we go:
I strongly disagree with the notion that a pro-choice stance automatically results in a pro-termination stance upon receipt of a pre-natal T21 diagnosis. Pro-choice means PRO-CHOICE. It means you support a woman’s right to choose what happens to her own body. I think there are actually different ethical considerations when you’re dealing with an unwanted pregnancy vs. a wanted pregnancy. With an unwanted pregnancy the moral issue is whether it is acceptable to force a woman to go through pregnancy if she doesn’t want to. But once you’re dealing with a wanted pregnancy, the choice is no longer about the woman’s right to her body – because she has already made that choice. It becomes instead a decision about what the woman (and partner, if applicable) feels is best for her child. Parents have had to make heartbreaking choices about terminating pregnancies in which the fetuses were simply not viable or would have had little to no chance of survival. It’s a crushing loss and it’s unfair to put a political spin on what these parents have been through. Personally I think you’re treading a thinner line when you are dealing with diagnoses in which a child can lead a happy and fulfilling life. But then again, who defines “fulfilling,” and is there a requirement for how long that life has to be? I mean – does one terminate for Trisomy 13 or 18? For Tay Sachs? Most children with T13 and T18 don’t live past a year, though some live into adulthood, and Tay Sachs gives a few years at most, the end of which involve some major deterioration. That’s a lot of suffering. And then what about Down Syndrome? Cystic fibrosis? A missing limb? Cleft lip? How about if it’s a girl and you wanted a boy? Where do you draw the line, or is there a line at all? I’m not asking what people should be allowed to do – just what they might consider when making these decisions. Raising a child with a disability is a big commitment. It is. You can’t do it half-heartedly and you have to know that it will change your life’s course. But that is also true if I take out the words “with a disability.” I like to hope that expectant parents who don’t feel prepared to raise a child with, say, Down Syndrome or CF would be willing to let the child be raised by others who feel differently, but in the end, it’s their choice.
Now, here’s where we get to the really cloudy ethical area – what is the doctor’s role in all of this? There are two big issues that I see coming up over and over again: poor and outdated information, and pressure to terminate. They often go hand in hand.
First, parents are often given an extremely bleak picture of the life of a person with Down Syndrome, and I believe that providing decades-old information is actually robbing women of their freedom of choice. Imagine that you’re told your child will lead a miserable and painful life and die in infancy or early childhood, and if they survive childhood they will never be able to learn very much or work and will probably get dementia and die in their 20′s. Now imagine you’re told instead that your child will always need some degree of support and will be more prone to some serious health issues, and it will mean a lot of hard work and patience on your part, but with early interventions and a good support system the child can lead a happy life and have friends and be beloved by their communities, and possibly even have a job or get married when they’re older. Might these two offerings lead to different decisions on the parents’ part? Maybe, and maybe not – but how can we know until doctors provide more accurate and holistic information?
Back in the 80′s, there was a child born with Down Syndrome and esophageal atresia, just like Leah. The doctors could have given the child a g-tube for feeding and then repaired the EA/TEF (it sounds like this child had the more common Type C), but instead they told the parents that the child would have a miserable life and would only suffer, and that the humane thing would be to let the baby starve to death. The parents trusted the doctors and agreed to let their baby boy starve to death. This case went to the state’s Supreme Court because there were several families that were willing to take the child in and make sure he got medical treatment, but the parents refused to allow this because they truly believed they were doing what was best for their child by letting him die, and the court agreed that it was the parents’ decision. This child was JUST LIKE LEAH. And they let him starve to death by withholding medical treatment. I realize this is a different issue because the child had already been born, but still – parents going through the crisis of learning of an unexpected diagnosis are in a vulnerable state, and doctors need to give trustworthy and current information about what that diagnosis means. Then, and only then, can the expectant parents make an informed decision about how they want to proceed.
Second, I have heard from a LOT of women that their doctors pressured them to terminate their pregnancies even after they declined abortion. Dear doctors: The freedom of choice is about the FREEDOM to CHOOSE. And if a woman CHOOSES to proceed with a pregnancy after a prenatal diagnosis, NOD YOUR HEAD AND MOVE ON. She’s made her choice. Focus on keeping mother and baby healthy and safe and preparing for appropriate medical interventions after delivery.
We feel very lucky that we did not get pressure like that with our OB/GYN providers. We had already made our choice, but it would have been very stressful to have to argue with doctors when we were already going through a tough time (especially with the suspicion of EA). What did happen is that once we had confirmation that our baby had Down Syndrome, we met with the geneticist and were handed a copy of Babies with Down Syndrome. That is the proper reading material in this situation – not some 30 year old pamphlet with little to no information about early intervention. Then we were directed to the high-risk OB for further consult and a more detailed anatomy scan. And that high-risk OB did not mention or suggest termination even once. He treated us like any other couple concerned about the health of their child-to-be, made the proper arrangements for us to deliver at the hospital where the pediatric surgeons were located, and arranged for us to meet with the surgeons – a meeting which of course never happened because Ms. LeahBug decided she was ready for the world 8 weeks early.
I know it’s not going to get any easier for us as Leah gets older and her developmental delays get more pronounced. And things haven’t exactly been easy thus far (though largely because of the medical issues). But Leah is the sweetest, most precious little girl, and I can’t imagine our lives without her. She chose us, and we chose her back.