Saturday, September 6, 2008

Thoughts on prenatal testing...


I've been thinking about this all week, ever since Palin was announced as McCain's running mate. The media has been making a really big deal about the fact that "she knew ahead of time that her baby was going to have Down syndrome, and yet she decided to have the baby anyway." They say this with a sense of awe and/or surprise.

It seemed odd to me, until I learned that 90% of babies diagnosed with Down syndrome during pregnancy are aborted. 90%. I did a little research, and found that there are approximately 5,000 babies born with Down syndrome each year. So, if we assume that roughly 75% of those were diagnosed during pregnancy (just for the sake of estimating the impact), that's around 3,750 babies born with DS each year who were diagnosed during pregnancy. If that represents the 10% that are not aborted, that means there are another ~33,750 babies with Down syndrome that are NOT born each year. I don't want to start a debate on abortion, but that just breaks my heart.

This does help to make some sense of what dh and I experienced when I was pregnant with Little Bitty. I had the routine blood tests done around 15-16 weeks and didn't think much of it, until the dr's office called me about a week later to tell me my test results came back showing increased risk of Down syndrome, significantly more likely than it should have been for my age anyway (I was 30 at the time). They wanted me to come in the next morning.

When I went in for my appt, they were all ready to do an amniocentesis. Seriously, the nurse came in with all the equipment ready to go, and they didn't actually ask if I wanted an amnio, just assumed that I would. Whoa, stop the bus! After all, wasn't the amnio known to have some risks too? They looked at me like I was nuts, but the nurse escorted me into the doctor's office for a more thorough consultation.

Having just been through a miscarriage (not related to any testing, just happened spontaneously, unfortunately) a few months prior, even a remote risk of miscarriage was too much for me to think about (and let's be honest, the big needle was a deterrent too). I'm not at all judging anyone who chooses to have an amnio, there are plenty of reasons to do so and the risk is pretty low. Just explaining my mindset at the time.

When I told the doctor I wasn’t interested in having an amnio, he was skeptical. He kept reminding me it was the only way to know for sure, and he told me a few times that if we wanted to consider ending the pregnancy if the results were positive, then we really need to have the amnio, and right now. We had no intention of ending the pregnancy regardless, so I declined and asked what other options we had. He reiterated that the amnio was the only way to know for sure, but said they could do an ultrasound to look for "markers" of Down syndrome. I agreed to that, and the u/s showed nothing unusual. It wasn't definitive, but it was reassuring.

Here’s Bitty’s sonogram picture from that day, it looks like he’s waving :). That was the day we found out he was a boy!


I admit I was a little disturbed by how they just seemed to assume that if our baby was found to have Down syndrome, that we would most likely want to have an abortion. I had no idea how common it is to do just that. After all, I had fallen in love with our baby the moment I learned of his existence, and nothing was going to change that!

Now, I probably should have used the months between that point in time and delivery to do some research on DS and try to prepare just in case, but I didn’t. I completely put it out of my mind. This news came scarcely a month after Cuddlebug and Bearhug had been diagnosed with autism, so at the time, the possibility that our third child might also have special needs was a bit overwhelming. We were still trying to research autism and navigate the world of therapies, waiting lists, etc.

I remember feeling a little swell of panic as we drove to the hospital on the day Bitty was born. Up to that point, I had purposely not given the possibility much thought, but now we were going to find out for sure whether our son had DS. I started to think maybe I should have done some research on DS just in case, but figured we’d just have to immerse ourselves in a “crash course” if needed. As it turned out, he does not have Down syndrome. He would eventually be diagnosed with autism 2 years later.

Which brings me to my last point. Currently research is being done to enable diagnosis of autism earlier and earlier in a child’s life. I am all for that – if we could diagnose in infancy it would save both parents and children a lot of heartache, and would enable parents to seek out help for their children sooner.


But what happens if a test is developed that will diagnose autism during pregnancy? On the one hand, it would give parents time to research and prepare. But on the other hand, will we see 90% of autistic children aborted? I don’t even want to think about a world like that, and yet it has already happened in the case of Down syndrome and perhaps with other conditions that can be diagnosed prenatally. I don’t want to debate the broader “cure” issue, which I know is a hot-button topic, but I have to ask, is this what some people have in mind when they think of a cure for autism? Will there come a day when people say with amazement in their voices, “she knew her baby would have autism, and yet she decided to have the baby anyway?”

10 comments:

Dianna on September 6, 2008 at 8:22 AM said...

It is sad that so many babies with Down Syndrome never get to experiencing life. It is heart breaking. My brother and my brother-in-law have Down Syndrome. For me, I did none of the testing that was recommended during the pregnancy, no matter when the babies were born we would love them, cherish them and have no regrets. Every child deserves life.

lonestar818 on September 6, 2008 at 11:33 AM said...

Dianna - thanks for your comment, I completely agree!

melody is slurping life on September 6, 2008 at 12:06 PM said...

Excellent post.

People even say to me about Lee..."I bet if you had known what his extreme behavioral difficulties would be later in life you would never have adopted him." or "I bet you would like to have given him back." Lee was my child the first time I laid eyes on him...end of story.

All of this testing makes me want to ask will it one day be "ok" to murder a child who has already been born but whose needs were not recognizable before birth? Scary.

HDMac on September 6, 2008 at 3:55 PM said...

Those of us with special needs children would not change it for the world. I believe that God does not make mistakes and gives us our children with a purpose in mind. My life is so much enriched because I have been blessed with my special angel. It has NOT been easy, don't get me wrong but she is a blessing to me and every member of our family.

I appreciated this post and God bless you!

Marcia

Rachel on September 6, 2008 at 4:38 PM said...

Wow. Someone needed to say this.

As a child of a young mother who was extremely pushed to have an abortion (meaning, driven to a Planned Parenthood appointment) - and a person with a disability (profoundly deaf), I am saddened that people will use these reasons to do away with an inconvenient life.

Every child has special needs, every child needs love. I'm sure you cannot imagine your life without your little ones - what blessings!

Thank you for your thoughts.

rhemashope on September 6, 2008 at 8:57 PM said...

Thanks for this post! I admire you so much for writing about this. I also wonder about the inaccuracies of prenatal testing - how many people are rushing to abort their babies just because there is an "increased risk." Regardless, it's heartbreaking to think about, and I agree that once there is prenatal testing for autism we will see the same thing that has happened with Downs... makes me want to weep. I truly pray for that this country will somehow wake up. Thanks again, Danette.

Penelope on September 6, 2008 at 9:00 PM said...

I get so sad when I hear things like this. I am amazed that the numbers of aborted children with down syndrome are so high. I will never judge another person by this, because their actions are their own, but I know I could not do that. I didn't have any testing done while I was pregnant with my son, because I knew I would love him regardless. To me, it is morally wrong to pick and choose my children by their medical conditions.

Debbie Yost on September 6, 2008 at 10:49 PM said...

I have a beautiful 3 year old daughter with Down syndrome. One thing you didn't mention is the high rate of false results. How many of those children that are terminated did not have Ds? Personally we did not have the test and I was 35. The increased risk raises as you get older simply because of your age. My doctor did not push the blood test. When I said termination was not an option he said then don't do it.

I have met many parents that were glad they knew ahead of time so they could prepare and research. Personally, I didn't want to worry about the remainder of my pregnancy. So, we got the crash course. 24 hours after our daughter was born we learned she had Ds. The first thing I wanted to do was hold my baby girl. For me, that was comforting and I wouldn't have been able to do that if I found out when I was pregant.

I don't mind the testing, it's the pushing of so many doctors to terminate. They look at the diagnosis on paper. Sure it's scary there, but you need to research the person. I wish more information was given to parents on the joys of raising these children. I know several people that lost their children at a young age due to medical problems. They would rather have had their child for a few months than not at all. Some have considered adopting a child with Down syndrome.

I'm sorry to ambush your blog. I appreciate everything you said. It helps to hear it from someone who does not have a child with Down syndrome. Thank you!

lonestar818 on September 8, 2008 at 1:16 AM said...

Melody - It's hard to believe anyone would say things like that, how awful!

Debbie - excellent point about the rate of false positives, thanks for bringing that up! You didn't ambush, I appreciate your insights!

Thanks everyone for your comments and kind words.

Jeanette on September 9, 2008 at 12:30 AM said...

I am the mother of a one year old daughter with DS. We found out ahead of time, I failed the initial blood test although Sydney passed the nuchial fold sonogram. We opted for the 24 point sonogram which she again passed with no DS markers. I really had a feeling, so we opted for the amnio and sure enough she was positive for DS. I am one of those who was glad to know. We prepared ourselves and our family and friends. Sydney's birth was nothing but joy (outside of the medical issues). BUT, having said that, the 90% abortion rate is out there and awful. There are a bunch of us who are actively working with our local DS associations to get the medical profession to give a balanced approach to the diagnosis and not just list grim statistics. Thank you for blogging about this. I think your point on "What if" testing went on to other things like autism, you wouldn't want to be in that world was spot on. For all of our kids sake, I hope no more "pre-natal" testing gets created until our world becomes more educated and accepting.

 

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