The Two Faces of Reece

Why Isn't He Eating?

During the next two days, Brad and Jenny got their first taste of what it means to be the parents of a baby who looks different: Many of the friends who dropped by to visit went out of their way to avoid talking about Reece's condition. "He has such pretty eyes!" they would coo in overly sweet voices. Or: "He's so . . . big!"

When she and Brad brought their 2-day-old son home from the hospital, Jenny insisted on holding him constantly; she didn't want anyone else to take over his care. "He just seemed so vulnerable," she recalls. "I felt I had to be with him all the time." Some of it may have stemmed from guilt: Because Jenny is an epileptic, she'd had to take seizure-control medication throughout her pregnancy. She worried that it might have been the cause of Reece's cleft, even though doctors told her there was no way to know for sure. "I felt so bad -- and I thought I always would," she says.

Jenny wanted to breast-feed, and before she left the hospital, a lactation consultant had shown her how to help Reece latch on. What Jenny didn't realize -- and, inexplicably, the consultant didn't seem to, either -- was that the opening in the roof of Reece's mouth made it impossible for him to suck hard enough to draw more than a dribble of milk from her breast.

It wasn't until Jenny had been home from the hospital for more than a day that she began to suspect there might be a problem. Reece was crying constantly, and although he was wetting his diaper periodically, he still hadn't had a bowel movement.

Jenny called her pediatrician, who didn't have much experience caring for babies with a cleft palate; he dismissed her worries as overreaction. Finally, several days later, she demanded that the doctor see them. When he weighed Reece, the doctor gasped: The baby had lost two pounds since leaving the hospital. "He's not getting anything to eat!" he said.

Jenny was devastated by the thought that she'd been inadvertently starving her baby. The pediatrician threaded a feeding tube through Reece's nostril, down his throat, and into his stomach. Then the doctor filled a syringe with formula and passed the fluid through the tube. Within moments, Reece stopped screaming and settled down contentedly, his tummy full for the first time since his birth. The tube would remain in place over the next week, and every two hours, Brad and Jenny had to inject formula into it.

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