Sunday, October 2, 2011

When We Knew

I'm not going to talk much about what Trisomy 21 is...chances are, if you're reading this blog, you're familiar with what the chromosomal "cause" of Down syndrome is. I'm not sure I've ever written about when we found out Pacey had Down syndrome though, so that seems like a good place to start.

I had routine prenatal screening done during my pregnancy with Pacey; at that time, what the HMO authorized was a triple screen and high-level ultrasound at 20 weeks. I had both done and nothing abnormal showed up to indicate the possibility of Down syndrome. In addition, I was 25 years old - a maternal age at which the number of babies born with Ds is about 1/1100. This number is different, of course, than the number of fetuses conceived that have Trisomy 21...many of those are miscarried and some terminated.

Basically what the above paragraph means is that a genetic abnormality in my baby was literally as far from my mind as possible. I had a very uneventful pregnancy up until 30 weeks at which time I noticed the baby had stopped moving and ultimately had a c-section the very same day. No one knew quite what was going on with him until he had surgery 4 days later. In retrospect, I believe the NICU staff thought they'd find an intestinal atresia, which is more common in babies with Down syndrome. What was actually discovered was an annular pancreas, an unusual condition in which the pancreas grows in a ring around the intestine, causing a complete blockage. When we received that news from the surgeon, I wholeheartedly believed that that was the extent of our surprise.

I was discharged from the hospital five days after Pacey was born - a painfully beautiful November day in Southern California. To this day I can remember how the air smelled and felt. It was emotional leaving the hospital without him, but frankly in the grand scheme of all that had transpired in the previous five days, I was mainly happy to be heading towards something of familiarity. We arrived home, my mom and husband made me a nest on the couch and my mom had just made me some food when the phone rang.

I answered the phone and it was one of the NICU doctors, as well as a geneticist on the line. He proceeded to tell me that a genetics test had been performed and showed that our baby had Trisomy 21. I don't remember much else that he said at that point.

The next part feels a little too private to share. I will say that my husband was an absolute rock, and that day was one I considering to be a defining point in our relationship. Some hours later, we went back to the hospital and visited our son, a three-pound wrinkled little bundle who'd already changed the course of our lives. I remember that we went to Target from there, to pick up my pain pills and some champagne (classy) to celebrate. I was familiar with the pharmacist there and she asked with no small amount of concern if I was alright...I can only imagine how I looked, having cried for hours and feeling rather tender five days post-op.

In that moment I was about as far from alright as you can get, but now I - we - are better than alright. I wish I could go back and tell that terrified new mom just how ok it would be, but I wouldn't have believed me.

I will say that the first glimpse I had of the fact that we'd be ok was when I saw the picture below. It was the first time I'd held Pacey, probably about a week after he was born, and a nurse took our first family photo. I looked at that photo and somehow, seeing that I looked exactly the same and my husband looked exactly the same was so comforting. Sure, things were different than we had planned for, but we were still US and we'd be fine. And we are.

Edit to the above description: we looked exactly the same but REALLY tired

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