About ten hours after Charlie was born, a neonatologist told us that our son probably had a syndrome that could include problems with his heart, his kidneys, and his brain. He started talking about how doctors are growing new ears on the backs of lab rats, and I had to bend over in my wheelchair and put my head between my legs so I didn’t faint. When I did that, since I was so recently pregnant and then suddenly not pregnant anymore, I was acutely aware that there was no baby bump, and I felt panicky, like, “Where is my baby?” and then, “Oh yeah, he’s right over there,” and then, “But they are telling me he is not OK.” (I am not sure where Jeff found the strength to be rubbing my back, reassuring me, when it was happening to him too, but in the days to come it became clear that we each processed and handled the various situations quite differently, and we had to work a little bit to come together, but when we did it was so good—perhaps another post for another day.)
About 48 hours after that Dr. Rhonda Spiro, the geneticist, walked into our hospital room and made it all go away. She said Charlie was healthy, that his birth defects were limited to what you could see in his face. “They told us he might have mental retardation,” I said. “Put it out of your mind,” she said. “What you see is what you get.” Dr. Spiro is so kind, her manner so exactly what we needed, I think I would love her even if she’d brought us bad news, but she brought us incalculable relief. I love, love, love Dr. Spiro.
About four months after that, we brought Charlie to see the craniofacial team at Dr. Spiro’s clinic, the National Birth Defects Center. The team is lead by a plastic surgeon from Children’s Hospital named John Mulliken, an older white guy in a bowtie. Jeff and I walked into the room and found nine people, including Mulliken and two young Asian guys he must have been training. “What do you think?” Mulliken said. “One, maybe two,” one of the students said, apparently evaluating the severity of Charlie’s condition.
Uh, hello there, nice to meet you.
Mulliken said, “Who are you going to get to do his ear?” I straightened up proudly and said, “Dr. Eavey.” I thought this was the right answer. This is who the hospital sent us to. He’s the head of pediatric otolaryngology at Mass. Eye and Ear.
Mulliken rolled his eyes. “Oh, Dr. EAVEY,” he said. Another doctor in the room—I have no idea what his name was because no one wore a name tag or introduced him or herself—said, “You have to be really careful who you get to do the ear. The best guy is Dr. Burt Brent in California.” I am totally confused. The head of the department at Mass. Eye and Ear is not good enough? Then the doctors started talking about Sylvester Stallone, about how his mouth pulls to one side like Charlie’s and it didn’t stop him from becoming a big star. I glazed out, unable to absorb any more information.
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