I've been thinking a lot lately about the statistic that is out there about 90% of women who receive a prenatal diagnosis of Down syndrome terminate. Shocking isn't it? If you haven't heard of this before, I think it is. Of course I hadn't heard of this before we got our diagnosis but now when I hear it, I tend to take it personally. Like, my little Bennett isn't "perfect" enough for someone else so they would choose to end his life. Now before I go on I don't want this to turn into a debate of pro-life and pro-choice. What I want this to be about right now is the fact that there is simply not enough information for pregnant women on Down syndrome. Why do pregnant women need to receive information about Down syndrome you may ask? Well, because DS is one of the most common genetic birth defects and I think we would see more babies with DS if the termination rate was not so high. So if it is so common why can't there be some sort of standard pamphlet that is given to a women at either her first prenatal appointment or most definitely at the time when she is given her screening results that may show an elevated risk? When I was told I had a 1 in 10 chance that my baby had DS was I given any information on it? Not a single thing. When I went to see the genetic counselor, was I given any information there? No. Only after we did the amnio and found out the results and told the counselor that we would not terminate she then gave me a couple of websites to visit. That's it.
Once I told the counselor that we would not terminate I visited various sites, blogs, chat rooms and there I realized I had easily made the right choice. I saw that these babies and children were not all that different and they are not in mental institutions or group homes and they can learn just like any other child. They are adorable. They are lovable. They can contribute to society. On the other hand they can have heart defects and various other medical conditions but so can "typical" children so what's the difference? Why couldn't I have been given a simple pamphlet that described what DS was, what medical conditions that can occur but also that they can live a very full life. Show me some pictures in this pamphlet of babies with DS, what do they look like? Maybe some testimonials from parents who have been in my shoes. Give me both sides for goodness sake but don't just give me nothing!
I realize that doctor's offices cannot give out a pro-life pamphlet and that's not what I asking for, I'm asking for something that gives women a little education, (both sides, because frankly we aren't given both sides, we are given nothing which in turn I feel makes women feel like a DS diagnosis is hopeless and so they feel they have no other option but to terminate), education on a condition that happens probably more often than we know but we don't see it as much because sadly these babies don't get a chance.
I realize there are so many other fatal conditions that babies can have and women have to make very difficult decisions on whether to keep their baby but Down syndrome is rarely fatal, yet it is grouped in with all the other terrible conditions that an unborn baby can have. So I guess my question is, would this make a difference, giving some type of educational material to a women when faced with this very common chromosomal abnormality? Has anyone else thought of doing this or has someone started doing this? If so please let me know how I could get involved. I just really think people need to be more aware of Down syndrome and I fear that with all this prenatal testing that is offered these days specifically targeting DS with absolutely no education on DS offered, my little Bennett will be one of few!
On another note, I am not against prenatal testing and sometimes I feel that people think if you do an amnio or the screenings you would automatically terminate. That is not always the case. I am a need to know kind of person. I needed to know for sure what we were dealing with, to get myself and my family prepared and to have the best medical care readily available for when my baby arrives. I'm so glad I did not need a pamphlet to help me to decide but I know that many women aren't like that and I don't judge them for that but I'd like to offer help if they do need that kind of information before they make a huge decision that from what I have read so many times can be so devastating once the decision to terminate is made and is carried through. The babycenter website has a group called "Termination for Medical Reasons" and not all of the women on there regret what they've done but they are in pain and many terminated just for the diagnosis of T21 (Down syndrome). Maybe if they were a little more informed they would have made a different decision.