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It's such a tricky discussion though. I just had a friend whose baby was born with some disabilities. She said she feels like she has to lead with that she had genetic testing and there were no signs that anything was wrong, She might just be being sensitive but said she feels like the reaction people have is that she should have had an abortion since their first q tends to be about testing and making hard choices.

Thanks for posting; it was good to read this perspective.

There was a recent episode of "Longest Shortest Time" that focused on a woman who is an OB/GYN, an abortion provider, and had an abortion of her own because the fetus had a significant genetic issue:

http://longestshortesttime.com/episode-74-the-scarlet-a/

I found that great to listen to, as well.

@winniebee: agree!

I do think we live in a world where it's becoming standard to abort babies that present with potential disabilities/health issues/syndromes during scans and genetic testing and honestly I find it really sad and think it's a slippery slope. I follow a girl on Facebook who was told her child would have severe mental retardation and other issues (would never see, hear, move, etc.) due to lack of brain development caused by major hydrocephalus among other issues and that was only IF she survived birth. That little girl just turned one and, while her head shape is abnormal, she is rolling, has words, can hear and interact and can see with glasses. She is a source of joy for her parents and for many others - including me! Had they followed their doctor's advice (along with many specialists) they would have aborted and that to me is just devastating in light of what this sweet girl is accomplishing day in and day out. So without even going into the morals about why I believe abortion is wrong - I just think that there is the potential doctors are giving advice to parents that doesn't tell the full story (simply because they just cannot know, not because they are intentionally trying to mislead anyone certainly!) and that really, really scares me.

@delight:

Thank you for sharing this. I cannot believe that we are fighting, once again, for the right to choose.

There was a video a few years back here in the Boston area of protestors screaming at a woman going to a clinic and her husband finally lost it on them and explained that they wanted the baby but the baby had died (or would die? I can't remember). It always stuck with me. There are no bright line rules in life, at least not for me.

Very powerful article!

I definitely agree there's a stigma. We had testing done because we knew we might decide to terminate, depending on the results. But did we share that with people? No, we didn't, because we knew we'd be judged for even thinking it. But termination was definitely a possibility for us and a major reason for our having testing done.

ETA: I think the point the author makes it really important. And abortion is an abortion, no matter the circumstances that led to it. Calling it something else and pretending that it's different only makes it easier to judge "abortions" and put restrictions on "abortions" because if you think an abortion is only one specific thing and a termination is something different, it's easier to judge one over the other, when in the eyes of the law, they are the same.

@coopsmama: I get what you are saying, but I don't think it's anyone's place to judge what others should be okay with dealing with in their day to day life of raising a child with disabilities. Plus while stories like that little girl are wonderful and inspiring, I am guessing they are the exception rather than the norm, as otherwise medical advice would change.

@winniebee: I am absolutely one of those who got genetic testing because I would have terminated depending on the results, and I think that's ok. No one else would have to raise my child, so why should someone else get to make a decision about it?

@winniebee: Where I live, I had to have amnio confirmation of our Panorama results. They don't do TFMR without CVS or amnio results. Do they allow people in the states to terminate without concrete results in later stages of pregnancy? I am not familiar with laws.

@coopsmama: I guess when I hear slippery slope, I assume that you judge abortion as wrong, (not like you judge people who get abortions as bad people!). Just that you judge (ie. view, decide, not in like a bad-judge-y way!) abortion as a not good choice. Sorry does that make sense?? I didn't want to imply that you were being judgmental of people at all.

And I think that doctors rarely know EVERYTHINg--there are always exceptions But they work in odds and probabilities, and I don't know how helpful it is to a parent facing a devastating diagnosis to hear, "Well I have one little girl out of 200 who seems to be leading a fairly good life"--maybe it is, if your decision is going to be to keep the baby regardless, but if you're highly considering termination, I would hate to have false hope. IT's a tough situation for sure.

@winniebee: I get what you're saying, it's not all that talked about but I guess Bc of convos I've had I do assume most testing is for choices about termination. And then seeing my friend mourn I've realized the judgements come from anyone making difficult choices, it's not just from one side. And she's had to accept that people look at her child and assume shes a religious zealot who wanted to bring suffering into the world.

I try to stay out of conversations like this, but it makes me really annoyed when people say "oh, having a child with disabilities is no big deal... not worth terminating. You love them either way". It makes me wonder if they have ever had someone close to them ACTUALLY HAVE a child with *severe* disabilities. Not down syndrome. Because a member of my family does, and her father is an OB/GYN. And has said since the day she was born with a congenital heart defect 42 years ago that nature f*cked up and she should've been a miscarriage. And he could never go on to perform abortions of healthy fetuses ever again. And this child dramatically and FOREVER changed their lives, their marriage, and their family for the worse (they say). Their other two grown children are permanent caretakers and can't move too far from home. The disabled child lived at home until she was 20, never maturing beyond a toddler's emotional level, part blind, part deaf. Her mother quit any hopes of her own career or life to care for her, lobby state senate for funding for a residential home for her, then build and staff the place with her own two hands. Only then could the disabled girl move out - a mile down the road - and still needs daily intervention, anti-psychotic medication, and care. They didn't go on a single vacation as a couple without kids for 20 years since nobody else could care for her. She is now 42, they still fight every day to fund the center where she lives or she could end up back at home. Every f*cking day it is a struggle.

"Disabilities" can go so beyond Down's or syndromes we may be familiar with and I would NEVER in a million years judge parents for terminating based on a diagnosis in utero. Ever. Ever. Ever.

Other thing, as a pediatric nurse, I see the value in every child's life... all varieties of disabilities and capabilities. But also, the suffering that comes with severe disability can be so extensive. Honestly, if I discovered something in genetic testing, I have no idea what I would do. I have met lots of moms who tell me how they were told their babies would die immediately, die soon after birth, live with horrible disabilities....and their children exceeded all odds. I have met other moms (way more I am sure) who's whole lives are about taking care of their disabled children. Lots of medications, treatments, extensive hospital stays that will only get longer. And pain, so much pain that they can't tell us about. Then the parents have to be brave and strong to make the decision when enough is enough, and withdraw care. SO yes, I think they should be able to make a decision before to spare all that suffering to the child, parents, and other members of the family.