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From Research to Reality

To understand her son’s birth defect, a mother makes an emotional and scientific journey

Katherine E. Willmore

2011-09MacroWillmoreFA.jpgClick to Enlarge ImageJust over two years ago, I had my first child, Max. My entire pregnancy was magically boring. Both baby and I were in perfect health—until the last month, when we learned that Max was breech. No big deal, my husband Eric and I figured. We’d just get in touch with the local doctor who is known for his ability to “spin” babies—to turn them so that they are facing downward toward the birth canal. Then I got a call from my midwife. My most recent ultrasound had revealed some problems; I had to have more tests right away.

At the hospital, the doctor told me that my amniotic fluid was extremely low and that Max would have to make his debut a little early. We were unable to turn Max into position, and my hopes of natural childbirth were dashed. I was scheduled to get a Caesarean section in two days. Not sure how to prepare, my husband and I spent the evening before the arrival of our first child doing our taxes and then celebrating with sushi (just veggie rolls for me).

The very idea of a C-section freaked me out. Needles make me weak in the knees, and the thought of being awake while a doctor made a large cut in my abdomen didn’t sit well with me. Luckily, I was so excited about meeting our baby that I could push my fears aside. And the operation went well. Max came out shivering and crying and, in the eyes of his parents at least, absolutely beautiful. My husband, Max and the midwife left the operating room while the doctors closed me up. As I was wheeled back into our room, my midwife came to my side. “Max has a cleft palate,” she said. This would be shocking news for anyone. But the kicker is that, as part of my Ph.D. thesis, I had conducted research on cleft palate. My eloquent response was, “You’re shittin’ me.” As it turns out, though, people don’t joke about developmental disorders in newborns.

My initial shock shifted, over the first few days of Max’s life, to oppressive guilt. Mixed in with these emotions were feelings of grief. Even in the moment, I could feel that this grief was over-the-top—we had been spared many other, more serious problems—so I did my best to hide the feelings from others and from myself. Throughout the pregnancy we had wondered about the usual things. Is it a boy or a girl? Will he be tall like his dad or short like me? Will he be colicky? In fact, the ills of a colicky newborn were the only negative thoughts I allowed myself. So when I learned that Max had a cleft palate, I mourned the loss of the “perfect” baby I had naively expected. But my overriding emotion was worry, a constant, niggling fear that something horrible would happen to Max because of the cleft. Will he be able to feed okay? Can he breathe all right? Are there other developmental problems that we’re unaware of? We spent the first few months just waiting for the other shoe to drop.

As it turns out, we’ve been very fortunate. Max is thriving and there have been no unforeseen problems. Two days before his first birthday he had surgery to repair his cleft, and the entire ordeal went swimmingly. The doctors did an amazing job, and one would never guess that Max once had a problem with his palate. Still, I often find myself wondering, what are the odds that someone who has done research on a disorder would have a child afflicted with that disorder?

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