A Startling Statistic

Over 90% of of couples who receive a positive result from their amnio for Down syndrome, terminate their pregnancies. That's a huge number. It's not only startling but scary.

As you may have read in an earlier post, I declined the AFP early on in my pregnancy. My doctor and nurse had offered it many times and every time I declined. I have heard too many stories of "false" positive results. A positive result means that you have a higher probability of having a child with a genetic problem or Down syndrome. I was 36 when I got pregnant with Joaquin and being pregnant in your late thirties puts added strain and stress on you, mostly because of how the professionals handle "older" mothers. We are encouraged to have genetic counseling based solely on age and we are encouraged to have an amniocentesis, all of this to rule out or discover problems with our unborn children.

If you get a positive AFP (alpha fetal protein) or if your 20 week ultrasound shows "markers" for DS such as a spot on the heart or heart problems, short femur length or a thick neuchal fold, the health care professionals will recommend an amnio to get confirmation. I have heard from so many mothers that this is not only encouraged but almost pushed to be completed after getting a positive AFP.

I went through genetic counseling with my pregnancy because this was encouraged based on my age. Hector and I went through with it mostly because it was covered by our insurance and we thought it would be very educational. We told the counselor that we would decline the amnio but did agree to an in depth 20 week ultrasound to make sure all was well with the baby. How strange it is to think back on these appointments, the ultrasound and the genetic counseling, and to think we were carrying a baby with Down syndrome and nothing led us to discover this. The ultrasound showed a perfectly healthy baby, no need for alarm or concern. How different this would have been if we would have gotten the AFP or the amnio. It's not so much the testing that bothers me but how the test results are handled and how fear plays a factor in how decisions are made based on those results.

It's hard sometimes to talk with other people who are pregnant or trying to get pregnant when the subject of prenatal testing is involved. Most of the time, it's just a casual conversation. A lot of my friends are older and some are planning and hoping to get pregnant. Inevitably, the topic comes up. People are either on one side of the fence or the other, testing just to have more information and to be better prepared for the birth or testing to rule out problems and end the pregnancy before it gets too far along. It's so personal for me now because I have a baby that many people would have decided not to keep. It's surreal sometimes.

I remember an email conversation I had with a friend who found out she was pregnant towards the end of my pregnancy. She too was an "older" mother and didn't want to formally announce her pregnancy until after she had her CVS. CVS tests can give similar results found with an amnio but can be completed much earlier in the pregnancy. She was prepared to terminate if the results came back positive and wasn't going to celebrate her pregnancy until after she found out that everything was fine with the baby. She had determined from the get go that she would not give birth to a child with a genetic problem. I'm curious how our conversation would have been if I had known that I was carrying a baby with Trisomy 21.

I am so fortunate that Joaquin had no serious health problems related to his Down syndrome. If he had had a serious heart problem, I'm pretty sure we would have seen it during our Level II ultrasound at 20 weeks. This would have made things much more complicated and stressful. I can only imagine how hard it must be for an expectant couple to handle this type of news and the worry it would cause. The same with finding out any difficult information about your unborn baby from a CVS, AFP or amnio. We all want the best for our children and perfect health is on the top of the list. We all want our children to start out with the best of circumstances.

But now I feel so differently about prenatal testing and diagnosis. I'm forever changed by my experience. Even the most casual of conversations about prenatal testing, the ones we have all the time as parents and expectant parents, are more personal to me. It's almost as if I have this internal alarm that goes off inside when I hear the words CVS, AFP and amnio. Now that I know what the termination rate is, it is so scary to me to think that a baby like Joaquin might not be given the chance to live. Why is the abortion rate so high? Do people look at Joaquin and think that he shouldn't be here? Crazy thoughts, I know, but knowing the statistics, it's hard not to wonder. Is society so caught up in perfection that we cannot accept babies with imperfections? When will the attitudes change? Will they ever? These are just my innermost thoughts and are not meant to be controversial but I know this topic gets very touchy very fast. I just want to understand why over 90% of pregnancies are terminated because of a DS diagnosis. That percentage is so incredibly high. My fear is that these expectant couples are given worst case scenarios and doomsday prophecies. Why else would this rate be so high?

My hope is that Joaquin and I can help some expectant parents see the "other side" of a positive result from an AFP, CVS or amnio. I am so grateful for non profit groups like the Down Syndrome Information Alliance (www.dsia.org) here in Sacramento and other national organizations that are working very hard to make sure that with every positive test for DS, the expectant parents are given information and support so that they can make informed decisions. I completely understand a woman's right to choose but I firmly believe in making sure that parents get both sides of the story before making such a big decision. Let's make informed decisions. We need all the facts, the positive not just the negative. Parents need to hear that children with DS are considered gifts to their families. Parents need to hear stories of how these children are so incredibly bright and full of potential and that many of the potential health problems are able to be treated. Parents need to meet other parents who have decided to keep their babies and would not change a thing about them. Parents also need to hear that there is a waiting list of people eager to adopt a child with Down syndrome.

I can't imagine my life without Joaquin and I can't imagine the world without Down syndrome. It's not something to eliminate or terminate in my opinion. It's something to accept and embrace. We can celebrate the birth of these amazing babies.