Wednesday, October 19, 2011

Prenatal Testing, Abortion and Getting it Wrong

All month I have been trying to sort out my feelings about this topic and deciding what I want to say. Even after all of that thinking, I don't think I'm much closer to the answer, but I figured I would go ahead and write about it anyway.

First, a little background. For those of us who have children already, you may remember being offered the chance to have a quad screen (or something similar) around 16 weeks or so. This blood test "screens" for the possibility of a chromosomal abnormality in your unborn child. It doesn't just test for Down syndrome, it also screens for the possibility of other chromosome problems. Some are far more serious than DS and often result in the baby not surviving until birth. I have always been a proponent of these screening tests because, personally, I want as much information as possible so I will be prepared. I have always looked at it like, if my unborn child is going to have a medical problem, I want to know about it ahead of time so it isn't a shock when the baby is born.

However, my experience didn't work out that way. I had the blood screen done when I was pregnant with both of my kids and both of them came back normal! When my doctor called to tell me the results from the test when I was pregnant with Aaron he said my risk was "slightly higher" than it should have been at my age but not enough to be concerned about. If you are considered "high risk" from the results of this test your doctor may recommend an amniocentesis to give you a definitive answer. I knew going into the test that there are a lot of false positives, meaning women are told they are at high risk just to find out later that their baby is perfectly normal. So in my mind, when my doctor told me everything looked good with the test, I thought it meant there was no chance my baby would have any kind of chromosomal abnormality. Obviously that was wrong.

So to me, the test is kind of pointless now. They told me everything was fine with my baby, none of the ultrasounds picked up anything abnormal and he was diagnosed with Down Syndrome after he was born. We went through a lot of grief after he was born. There's nothing like getting life changing news that you think is completely devastating on what should be one of the happiest days of your life. I know now that the diagnosis wasn't as devastating as it seemed at first, but I still think it would have been easier if we had known before he was born.

On the flip side, a staggering 90% of women who do get a prenatal diagnosis of Down Syndrome choose to abort their babies rather than continue with the pregnancy. This would never have been an option for me and it absolutely appalls me that this number is so high. I understand the devastation and confusion and grief that these women feel, but they don't have the benefit of seeing and holding and bonding with their little angel before they make their decision. Far too many doctors actually encourage women to choose abortion when they get this diagnosis. In my opinion, it's just a lack of education among women and OB-Gyn's about what life is really like for our children and their families. We have Down Syndrome communities across this country working hard to educate people about the benefits that people with DS bring to this world, but the message hasn't reached far enough. No woman should have to be told that there is something wrong with her unborn child and then immediately be asked if she would like an abortion. In that moment of fear and hurt, if that is the only option that is provided to her, she may think that is the only choice. It seems like a dark and unlikely scenario but I know FAR too many people that this has happened to. Instead of being offered an abortion, she should be offered counseling, information about raising a child with Down Syndrome and time to think about what decision is right.

To complicate the issue even more, there is a test that should be available to pregnant women in the next year or so that will diagnose definitively whether the unborn child has Down Syndrome or another chromosomal abnormality though a simple blood test (no amnio necessary) and it will available earlier in the pregnancy. I would like to think it will give families more time to cope with the diagnosis before their baby is born, but in reality, it is probably going to mean the abortion rate is going to increase even more. Without the risk of a miscarriage from the amnio and the ability to detect the disorder earlier in the pregnancy, people will choose to terminate their pregnancies and try again, hoping next time they will get that "perfect child".

Just thinking about that makes me both sad and angry. That so many babies like my son were never given the chance to live and that it will probably get worse in the future.

Having a son with Down Syndrome has really changed the way I look at my children and at the world. When our kids are born (and even before) we start planning and dreaming about what their lives will be like. We do everything we can to help them achieve their dreams. But no matter what we do and what we hope for, none of us knows for sure what the future holds for our kids. You can push your child and give him everything and hope that he grows up to be a doctor, but that doesn't mean it is going to happen. In fact, it's pretty unlikely that it will. I think having Aaron has actually been a blessing because I am able to look at my children and realize that they don't have to grow up to be geniuses that cure cancer, I just want them to be happy. And there is absolutely no reason that Aaron can't grow up to do just that and more.


  1. whooh...that's tough...I have to say....and I know you disagree...I would have chosen an abortion if given the choice. I don't think that would have been a bad option either. Yes, I would never had known the joy Nicolas has given me and others....but then again...I would not have known the difference. AND now....when I die before him...I think it will kill him. I don't think he could live without me. THAT is what makes me VERY sad. I can't tell you how often I think about that. I am not sure bringing him into this life will be worth his sorrow if (when) I die before him. I hope I have not burst your bubble...but I want to give the other side of the story....

  2. You haven't burst my bubble Laura, I completely understand your perspective. I hope that we get to the point where Aaron is able to live independently without an enormous amount of support. It is a reality for a lot of people with DS these days. But even if he doesn't, I think we have enough family and friends that will make sure he is taken care of when we aren't able to anymore. But I do understand that that may not be a possibility for some people. I just hate that the rate is so high right now simply because people see the diagnosis as something far worse than it is and they make such a huge decision before they get the chance to find out.