Turning a corner

The next day, Johanna was transferred for surgery. We had hoped for answers, for reassurances that our baby was fine, but we were met with negativity at every step. As soon as we arrived, doctors warned of the potential health problems Johanna might face. Half of babies with Down syndrome have life-threatening heart defects that require surgery. She would need an echocardiogram, her stomach x-rayed, her kidneys checked, and, of course, there were the developmental delays. "It's not so bad," one doctor said dismissively. "Some even learn how to use the bathroom and dress themselves." Every morning and evening, a team of residents came by while neonatologists pointed out her clinical features, the upward slant to her eyes, her flattened nose, the alleged low muscle tone. She had ceased to be a baby and had instead become a case study in trisomy 21 (the genetic term for Down syndrome).

Yet each day, as the doctors grimly chanted the characteristics that made Johanna a baby with Down syndrome, we claimed her more and more as our own. To us, her eyes were my husband's eyes, her button nose my own. Yes, her ears were set low on her head, another common trait of a baby with Down syndrome, but weren't they the same ears that all the women in my family had?

We saw ourselves in her, in the way she pouted, in the way she wailed with indignity under the bright jaundice lights, in the way she wriggled her way down the incubator with the utmost stubbornness until her toes were touching the bottom, and we fell in love. Her first day post- surgery, she shocked her team of surgeons and nurses when she managed to reach her hand up and rip her feeding tube from her nose. It was becoming clear to us that our little girl was a fighter, battling the stereotypes thrust upon her. "You can't tell me this kid doesn't have hand-eye coordination!" Jamie said gleefully. "Just wait until we get her on skis."

Without realizing it, we had turned a corner and made a decision. We were not going to buy into views of our baby as an extra chromosome. She was, first and foremost, our daughter. After the surgery, which was a success, we insisted she be transferred back to the hospital where she'd been delivered, closer to home. There, the nurses removed the "trisomy 21" sticker from her incubator and replaced it with one that bore her name. I signed her up for a state-funded early-intervention program that provides developmental therapy, and the hospital connected us with other families in the area whose children have Down syndrome. We met many of them and discovered that our nightmare visions were unfounded. Their children were walking and talking and singing and laughing, and, yes, all toilet trained and dressing themselves. We had nothing to fear, it seemed, other than outdated stereotypes.

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