Did you know before he was born that he had Down syndrome?

This is probably the most frequently asked question we receive concerning Wil. I’m always a bit curious what prompts this question. When it is raised by women in the “babymaking” years I realize I may represent one of their biggest fears - having an “unhealthy” child. When it is raised by medical professionals they almost always assume we did not know before he was born otherwise we would have aborted. And then I assume some people are just genuinely curious about our journey and how we received the news that would change our family in countless ways.

We did not know Wil was carrying that extra 21st chromosome before he was born. The day I “knew” was not due to his karyotype results or a conversation with a geneticist, it came from Wil. He arrived early, 32 weeks, and was in NICU III doing very well. We received great reports, he was breathing room air, his lungs looked good and his hematocrit looked good which was the most immediate concern. We were thrilled. Then the murmurings started, “He has the look,” some of the nurses were saying. They began pointing out some characteristics that are often seen in children with Ds. “But,” they would say, “he doesn’t have the palmer crease or the space between his toes.” Every time we went in those first couple of days they were back and forth. One nurse would say, “nooo. He is just puffy from all the extra fluid, I just don’t see it.” Another would say, “yes, I think he definitely has some characteristics.” The neonatologist was just as uncertain and to my surprise so was the geneticist after a bedside exam. So the karotype was ordered.

In the meantime I did what I do best, for better or worse, I went into “control” mode. I devoured everything I could get my hands on concerning Down syndrome. I didn’t even have a clue what it was, I just had all these false images rolling around in my head. I read and read and read. James and I were overwhelmed with information and we didn’t even know yet whether our second son would be carrying us on this journey.

Back to the day I “knew”. Wil was five days old. James was at home with Luke and my mother drove me to the hospital so we could visit with Wil. His nurse, Elvie, was there and she was our favorite. Being from New Zealand she had a great accent so it made listening to all the medical jargon easier and most importantly she cared so tenderly for Wil. As we stood by Wil’s isolette she was talking with us about his night and her impressions when Wil opened his eyes and looked up at me. It was the first time he really opened his eyes. That’s when I “knew”. Those beautiful crescent shaped eyes met mine and I knew that our lives were going to be very different than we had imagined. Now don’t get me wrong, I wasn’t all sunshine and light with an understanding of the joy Wil would bring us. Actually I walked into the waiting room and fell into a pile of tears until my mother and Elvie came and scooped me up. After that I finally got to hold Wil for the first time and I knew everything was going to be okay.

Get it Down:31 for 21! with 29 to go.

2 comments:

Tricia said...

What a GORGEOUS little guy. And I am sorry, but I can't help but think of the song "He's got the look" by Roxette when I read this post! :)

S. said...

Sweet baby. L. was a 33-weeker, so I never even saw his eyes open for several days, but I did know the first time I saw him with his eyes open.

My new CNM asked if we knew pre-natally--but she very much gets that our kids deserve a place in the world. I know what you mean though about the tone of most medical professionals.

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