Friday, February 08, 2008

a bump in the road

One year ago, as part of my regularly scheduled blood tests I had to take during pregnancy, I went in for what is called the "triple screen" test. This is a test that checks for any possible chromosomal issues in the fetus, such as spina bifada or Down Syndrome. I went in for the test, and although I had a nagging fear something might be wrong, I wrote it off as one of my natural fears that something is wrong every time I go to the doctor.

A week later, I received a call from my doctor that my results came back elevated for my age. You see, when you get this blood test, they weigh in a lot of factors like your age, weight, gestational age, etc, to come out with your risk of having a baby with some sort of problem. It is in no way definitive, and there are a lot of so-called "false positives." None of that information helped me when I found out that I had a 1/77 chance of having a baby with Down Syndrome.

My age at delivery was 33. The risk factor at that age is approx. 1/480 (or something close to that). The older you get, the higher the risk. But 1/480 felt a whole hell of a lot better than 1/77. I was told that instead of a regular ultrasound, I was to have a level 2 ultrasound, which is a much more detailed ultrasound where they look at all of the organs closely to see how they are developing. With a L2, the chance of confirming something like Down Syndrome is about 80%. The only way to know for sure is having aminocentisis, which is, essentially, a huge ol' needle they stick in your abdomen to retrieve cells from the fetus to determine, definitively, if there is a problem. There is a risk of miscarriage with an amnio; some say it's as high as 1/200, but I believe research shows the risk to be much lower than that.

So, my doctor calls me at work and says I have a 1/77 risk of having a baby with DS. They scheduled me for the L2 ultrasound for three weeks later - they had to wait until I was at least 20 weeks so they could see the organs clearly. She told me not to worry; there are tons of women who get news like this and everything turns out just fine.

I can't really remember, aside from shutting my office door, what I did next. The rest of the day was a blur of many, many tears, phone calls, emails, and Internet research. There is a message board on that I read religiously because so many, many women get numbers like I did, or worse, and have babies who are just fine. I remember one woman who tried to reassure everyone with her story: she was given 1/5 odds and her boy was perfectly fine. There were also people who received much worse news from their blood screen and resulting ultrasound: their babies had cysts on the brain, holes in their stomach, tangled intestines, major brain damage - nightmare stories that made the risk of DS seem so much less dramatic.

Over the following three weeks, I did loads of research about DS. I needed to know what our reality would be if the baby did have DS. All I could remember were the couple of kids who had it when I was in high school, but I didn't know what their lives were really like. I found out that with early intervention, people with DS are living much fuller, productive lives than they were even 20 years ago. The kids are part of regular classrooms, just with extra help. There are groups and communities all over the Internet and in real life that give great amounts of support to people with DS and their families. I read personal stories from women who said they were horrified when they got the news, either when they were pregnant or when they had their babies, but grew to have such a special bond and love for their child with DS that now they wouldn't change a thing.

People thought I was crazy for even going there in my head. They said everything would be fine. But I needed to know everything would be fine no matter what the result was. I needed to arm myself with information and support before I knew whether everything was indeed OK or not. Greg and I were faced with big decisions - the majority of people choose to terminate after they get the confirmation. We quickly made the choice that, no matter what, we wouldn't do that. But could we handle it? Were we equipped for this? I asked so many of my spiritual friends to pray hard for us, because I felt like my prayers would never be good enough for such a request - to please let my baby be OK.

I had a lot of dark days during those three weeks. It really took me that long to get right with the whole thing. I was recently cleaning out my email box and I came across a message I had sent my best friend, where I stated that this was the most stressed out I had ever been in my life, and it was true, even after having gone through the death of a parent, and the near-death of my brother in his car accident. This ate at me in a completely different way. In the meantime, I was doing a show - Love Letters - and I was able to pour a lot of my angst into that. It was really cathartic to do a performance where I had to well and truly break down. Because that's what was happening inside.

Something else happened during those three weeks. The baby started to move. I felt the very faint flutterings of movement. All of the sudden, this little being that was causing me so much misery was....real.

The day came for the ultrasound, and we headed up to UConn. The technician who did the procedure was great and answered my many, many questions, most of which were "is that normal?" During a day that was supposed to be so magical - the first day I would see my baby! - I was in a panic. Everything did, in fact, look normal. The genetic doctor came in after and had another look around. Although his bedside manner was for total shit, he confirmed that everything did look normal at that time. He stressed that I should get an amnio to know for sure. He really suggested that I do it right then because that would give me a few days to decide to terminate before it was too late.

But I had had it. I felt like I had aged 20 years in less than a month, and I was ready to enjoy my pregnancy. Maybe I didn't have 100% confirmation that the baby (who we now knew was a girl!) was OK, but if there were any glaring issues, it would have been apparent on the scan. My OB/GYN totally agreed. And so we forged on.

People always talk about the joyful moment they have when delivering a baby. My moment was a bit different. When Jane made her appearance on July 23, I cried over and over, frantically, "is she OK? Is she OK?" It was like they couldn't convince me that all looked well.

I think about that part of my life often, but especially now. Last Valentine's Day was so rough, but Greg and I bonded so strongly during that time, because it was the first hard decision (not that it was really a decision) we had to make together.

I feel like Jane is such a blessing, but I know I would feel that way no matter what. Because it was a year ago that she became a real person to me.


Flann said...

This made me all teary. What a nice tribute to a lucky little girl.

lgaumond said...

What a great post. I'm so sorry you had to go through such a scary time.

You're so lucky to have Greg and Jane, and they're definitely lucky to have you!

The Diva said...

You forgot to mention how smart your daughter was to pick such an amazing mom.