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Choosing Life and Beating the Odds: Accepting Down Syndrome

Ninety percent of babies with the diagnosis end up aborted. But that wasn't an option for me.

by
Cassy Fiano

Bio

February 9, 2012 - 12:08 am
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When my husband and I found out we were having another baby, it was a surprise. Our son Ben was only six months old at the time and Matt was preparing to leave for another deployment. He won’t be home for the birth of this baby. It was definitely not the way we had planned to have our next child, but we shrugged our shoulders and started making plans. The pregnancy began the same as it did with Ben. I went to the naval hospital, confirmed the pregnancy, and made arrangements to go to the same practice out in town where I went while pregnant the first time. And, like with Ben, I opted to have a first trimester ultrasound called the nuchal translucency screening.

This test measures the thickness behind the baby’s neck. That, plus a blood test, tells you if there’s a chance the child has Down syndrome. Like most of my friends, I got the test done purely for the ultrasound — to get a chance to see the baby for the first time. And, to my shock and dismay, the test came back positive. There was a 1 in 6 chance the baby would have Trisomy 21, or Down syndrome. The doctors were quick to tell me that there was no need to worry, that these tests come back with false positives all the time, and that there was still an 80% chance that the baby would be perfectly healthy. Still, to be safe, I was referred to a specialist an hour away to get a higher level ultrasound done.

Matt had not yet left for Afghanistan, so he was able to come with me to that first appointment. We saw the baby, and found out that we were having a boy. His little heart beat as he squirmed all over the screen. He had adorable little fingers and toes. To us, he looked perfect. But the doctor was concerned, and pointed out that there were several markers for Down syndrome and also a possibility of a heart defect. The large amount of swelling behind the neck, he told me, could be a sign of a heart defect which could lead to heart failure and stillbirth. Matt handled the news pretty well, but I cried the entire way home, and spent the rest of the night feeling depressed and miserable.

By the next day, I had started to become angry. There was nothing wrong with the heart, the doctor had admitted that himself. And he also had said, when asked by my husband, that the swelling could be perfectly normal and sometimes goes away on its own. Why would he scare us so much when there was no definitive evidence of anything actually being wrong? I had one more appointment with this doctor, where they would do another ultrasound and I would have the option of getting an amniocentesis done, but I swore that if he was as negative as he was the last time, I would insist on seeing another doctor.

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