16 April 2007

So I still can't believe the prognosis that we were given. Our unborn baby, heretofore considered to be perfectly healthy, has spina bifida. When we went for our level 2 ultrasound on Monday, our only thought was really girl or boy? None of my blood work had raised suspicion, so we had no reason to believe that they would find anything wrong.

After the ultrasound, the doctor came in and said that our baby looked "relatively healthy." This immediately raised red flags, but he followed it up with "your baby might have club feet. We're sending you for a follow-up ultrasound at St. Peter's to confirm." So we left thinking that it was no big deal, relieved that any problems could be easily dealt with.

Fast forward to Friday, when I went to the hospital for my follow-up ultrasound. After the technician spent almost an hour looking, the doctor came in with a young looking medical resident to take a look herself. I started to think that something might be wrong when the resident stood there with a screwed-up look to his face, squinting at the screen with his mouth puckered. And then the doctor started counting bones, saying "so it starts about here." I thought she was counting the bones in the toes, but this still unfortunately confirmed that he had club feet. Of course, it turns out she was counting the bones in the spinal column, not his toes.

Clues that something is going wrong with your ultrasound: the doctor asks about any history of genetic abnormalities in your family. You answer no. She repeats the question with different wording to make sure that you understand what she is getting at. Um, still no. So of course at this point I realize that something might be really wrong. I ask her why she is asking, and she tells me that there is something wrong, but she'll tell me when she has completed the ultrasound.

I had researched club feet, and saw that in some instances, it was a sign of spina bifida. However, because my blood work had come back fine, and we had no known history of it in the family, I didn't worry too much about it. As I lay there, I started to wonder if this could really be something. And within minutes, the doctor confirmed that was exactly what it was: spina bifida.

She was very nice and showed me everything on the ultrasound. She was sort of clinical and not entirely optimistic, but still very nice and pretty thorough. She said he hadn't moved his legs for the entire ultrasound, and that it seems as if his knees and feet have already been affected. She's not sure about his hips. She explained a lot about spina bifida, which I won't go into here. It was so hard to absorb, but I believe that I remember almost every word verbatim.

Another sign that something is really wrong: when your doctor chases you to the elevator and gives you some follow up information and a hug. This is a doctor that I had never met before, who sees so many patients a day, and she gave me a hug. It was so sweet, but also confirmed in my mind that the news I had just received was, in fact, very bad.

So Tim and I have cried and talked and kept busy all weekend. Our family and friends have been great support. It's Monday now, and I haven't cried in almost 24 hours. That's pretty good, I think. We're just waiting for the next step: the doctor is supposed to call me to schedule an amnio and a consult with the pediatric neurosurgeon this week. I'm praying it will be soon, and that we will get good news. Mac has been great -- absolutely oblivious and wonderfully 2. She is climbing on everything, running around, making us all laugh. She is her same sweet self, and I appreciate that so much. I know that no matter what happens, we will have a great family.