Thursday, October 25, 2012

Down syndrome: How I found out

This is the last post I'm doing for Down syndrome Awareness month. For that reason, we'll take another trip back in time.

When I was pregnant with Jaycee, I had no idea she had Down syndrome. I didn't do the optional screenings for it while I was pregnant. My ultrasound did not reveal anything. It missed the markers for Down syndrome, the hole in her heart, everything.. That was when the 4D ultrasound wasn't done regularly. So when Jaycee was born, I was expecting the regular baby experience like everyone else.

Jaycee was born and I still didn't notice anything. It was my first child. She looked all puffy from delivery. I was clueless. Much later that day, the pediatrician came to the hospital to check her out. That was my first piece of bad news:
   Your baby is having trouble breathing. She's under an oxygen hood. We've got a helicopter on the way to transport your baby to a NICU. (No big deal I thought. She is 3 weeks early.) I think I heard a heart murmur so they will check that out at the hospital. (I thought-Lots of people have innocent heart murmurs. This is still fine.) And I'm worried about some things on her body that indicate a genetic issue. Were you told about anything in the pregnancy or does anything run in your family? (Oh no! This is not a normal experience! Something's wrong.)

The pediatrician was concerned and compassionate. Maybe it helped that the pediatrician was a woman. I was cautiously optimistic when I left to go to the NICU. I clung on to hope because it seemed impossible to think something could be wrong.

The next day, my husband and I sat by our baby in the NICU. She was hooked up to wires and all sorts of stuff. It looked serious. It looked like we had a sick baby. I was scared to hold her. She seemed fragile. A group of doctors approached our bed. The main doctor was nice but to the point. He said: "If you notice, your baby doesn't look like your baby pictures (pointing to me) or your baby pictures (pointing to my husband). We are going to run tests but I don't need a test to tell me what she has. She has Down syndrome. She has many classic signs. Do you how she is a floppy baby? I can move her around and she doesn't resist me. (At this point he flops her around in different ways.) She has a line across the palm of her hand. She has a flat nasal bridge. There's extra skin on her back. She'll walk and talk but she'll get to a certain point and that will be it. You'll be raising a child all your life....."

I asked questions. I held it together until everyone left. I was shocked. I made it all the way out to the lounge where our parents were sitting. Then I had a complete breakdown.


There's no good way to find out your child has something wrong. It hurts no matter what. The part that broke me was hearing that Jaycee wouldn't look like me. It made me feel so disconnected from her. It took me a couple of years to "see" that Jaycee did look like me in some ways. I understand now what he was trying to say, but it was a horrible way to say that she would have features of Down syndrome. When he pointed out everything wrong, it was all I could see from that point on--the "flaws."

I've been trying to think of a good way to break the news but I'm not sure there is one. I think the most important thing is to sound compassionate and caring. You don't want someone to rattle off a bunch of facts and be matter-of-fact. Peoples lives are forever changed by this news and what is said initially sets the emotional direction. It's one of those conversations that I'll remember forever like so many other moms.

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