You are here

9 Fingers, 10 Toes

The moment my daughter, Penelope, was ushered into the world, the bustling operating room went quiet. No cries, no congratulations, no noise  -- only stunned silence. When I asked the obstetrician how the baby was, he answered with a catch in his voice, "She looks, um, pretty good."

If my mind hadn't been so muddled from the drugs for the cesarean, I would have shrieked for someone to tell me why she wasn't wailing; weren't newborns supposed to cry? As it was, I lay there, unfocused, while my first child was whisked away.

Fifteen minutes passed before a neonatologist knelt by my head and said simply, "Your daughter was born without a thumb on her right hand; she has a dimple over her tailbone; and she had only one artery in her umbilical cord. We have to do some tests." When my husband, Lyle, and I were reunited with Penelope in a post-op room a few minutes later, Lyle cradled her while tears slid down his face, and said over and over, "You're our baby and we're going to love you no matter what." I couldn't understand why he was being so dramatic  -- of course we would love her.

I must have looked at him quizzically because he quickly recapped what the neonatologist had already told him: Penelope's three anomalies could signal serious health problems down the road. Her arms may never grow to normal length; she may have only one kidney; she probably has a heart defect; she may never walk. A little voice inside of me, a voice I'm not proud of, said, It would be better for her to die than to grow up living with such debilitating physical defects.

Over the next 24 hours, teams of specialists coursed through our room. Most came in pairs: two cardiologists, two gastroenterologists, two plastic surgeons, two geneticists, two pediatricians. They ordered X-rays, ultrasounds, blood tests. As I watched my baby being pricked and palpated, I felt oddly locked in the present. I couldn't imagine anything beyond the next tests. The only thing I remember saying was, "I hope her arms grow." For some reason, the specter of foreshortened limbs scared me more than leaky heart valves or a missing kidney.

One by one the tests came back negative. Within 12 hours we learned that Penelope didn't have a fatal genetic flaw; all her organs were present and accounted for; her heart was strong; she would walk. Except for being one thumb short, she was perfect.

Lyle and I felt like we'd dodged a bullet. Our daughter was only minus a thumb. We called our friends and told them how lucky we were. But even though I had set the tone for these exchanges, I soon became irritated by everyone's upbeat reaction. How Pollyanna-ish they were, I thought bitterly. Their kid wasn't missing a body part.

That feeling was soon replaced by a scarier one: My daughter was only a day old and already I was becoming the mother I vowed I'd never be, the type who blurs the line between her own life and that of her child's. The one who says, "We have to write a report about Ohio this weekend," or "Our soccer team went to the state finals." Just cut it out, I thought. You aren't missing a thumb. Penelope is. And while you can help her deal with the hurtful remarks hurled in the playground and the stares of strangers, it's her burden, and her burden alone.

Mary Garner Ganske wrote about children's dental care for the June/July issue.

comments