A New Face for Nicole

Our newborn's face was so disfigured, she could barely breathe. Doctors wanted to wait months to treat her, but we fought to get her the help she needed.

On November 1, 1997,our first child, Nicole, was born. My wife, Kelly, had had a perfect pregnancy. She'd felt healthy and energetic for the whole nine months; all the ultrasounds and other prenatal tests were fine. We spent lots of time shopping for baby furniture, picking out names, and wondering who our child would look like. Even Kelly's labor and delivery were easier than we had expected. We were thrilled and unbelievably excited to become parents.

But as I stood, elated, in the delivery room, I took a close look at my new daughter. Her head was indented on the left side; her eyes were misaligned and set close together. Her nose was curved to the right and shaped like a banana. "Why does her head look like that?" I asked. The nurse assured me that all babies' heads are a little misshapen when they are first born and that in a day or two she would look fine.

But I couldn't shake the feeling that something wasn't right. I asked if a doctor could look at Nicole, just in case. The first physician came in the middle of the night. He said that the soft spot on Nicole's head was unusually large but that it was nothing to worry about. In the morning, a second doctor said her sutures might be closed. I'd never heard the term sutures before. We learned that these are the fibrous divisions in a baby's skull, which are supposed to be open at birth so the skull can expand with the growing brain. But when our own pediatrician came later that morning, he said he thought the odd look to Nicole's head and face had something to do with her fetal position and that they would be normal in a few days. "Let's wait a week and we'll reevaluate her." He told us to go home, enjoy our new baby, and stop worrying.

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