Edition: U.S. / Global

Holding On To Luke

Published: August 25, 2002
(Page 4 of 8)

''Healthy babies clench their fists, Rebecca,'' she said, pointing to Luke's open hand on the screen. ''This is a sign of declining muscle tone. He needs to come out. It's his best chance.'' I wanted to argue with her, to bargain for time on his behalf, but I had no facts at my disposal, no scientific rationale to offer in counterpoint. For the previous 24 hours, everyone had been telling me how lucky it was I came to the hospital when I did, but in that moment, I didn't feel lucky. I felt doomed. One day earlier, I had been able to walk into the emergency room myself, secure in the knowledge that even if I was sick, Luke was fine. Now I was flat on my back, Epsom salts running through my veins, being told my child needed to be delivered three months early. All I wanted to do was go home and get away from the inexorable conveyor belt leading me and Luke closer and closer to disaster.

As much as Dr. Violi tried to sell the case for an early delivery based on Luke's health, I was acutely aware that Dr. Violi was my doctor. There may have been two patients, but I couldn't help feeling that my health was what she was concerned about. But nobody in that room, including my husband, seemed to see a choice in the matter. Luke needed to come out. When the release authorizing the operation was put in front of me, I signed it.

One hour later, Luke Johnson Smith was born by emergency Caesarean section. He weighed 489 grams, approximately 1.1 pounds. I was prepared for the initial uncuteness of a baby after birth. But I wasn't prepared for Luke. When he came out, his eyes were still closed, his skin was dark red and his movements were panicky and frenetic, like a fish taken out of water, which is essentially what he was. When someone held Luke in front of my face for those brief seconds after he was born, I tried to reach out and touch him, but there was no time. If we didn't get him on a ventilator quickly, he would die. The next thing I knew, he was gone.

Whoever said hospitals were quiet places? Through my door, I could hear families and friends of other patients on the maternity ward gathering to celebrate a new birth. In my room, my husband and I, dazed by the events of the last 24 hours, tried to make sense of what happened. On the one hand, we were elated by Luke's birth -- somewhere, in that very building, a child of ours lived and breathed. But we were also filled with fear and dread. Could a child that small actually survive? Dr. Stylianos Theofanidis, the head of neonatology at the hospital and a friend of my husband's, came to visit.

''How is he?'' I asked.

Dr. Theofanidis took a deep breath and pulled up a chair. ''Luke is a very sick boy,'' he said, looking first at me and then at my husband. Too sick for a relatively small hospital like Greenwich, he said. An ambulance from New York-Presbyterian, where there is a highly respected newborn intensive care unit, was already on its way to get Luke. (A few weeks later, we would get the bill for the ambulance ride -- $4,162.64.) For the next 10 minutes, Dr. Theofanidis laid out all the hurdles a baby Luke's size would have to clear. Already there was the tube in his nose forcibly pushing oxygen into his lungs. Then there was his heart, his digestive system, his brain, his immune system. Everything we take for granted in our bodies would be questionable for a child that size. Each hurdle he cleared would be followed by another and another, and every one of them would increase the chance of permanent damage. Maybe it was because he knew my husband, or maybe he would have done the same for any parent in the same situation, but it was clear to me that Dr. Theofanidis wanted us to know that he did not think Luke's chances were good. I tried to muster some anger. Why are you killing my hope? I wanted to scream. But I couldn't get angry with him. It wasn't his fault. Besides, I wanted the truth.

The problem is that the truth made it difficult to know what to hope for. If Luke wasn't going to be healthy, what would be better -- an impaired life or no life at all? As much as advances in technology have improved the odds of a healthy birth, the early awareness of problems has also transformed the process into a moral obstacle course. The anti-abortion movement likes to talk about the rights of the unborn, but what about someone like Luke, whom I came to think of as half born or, as one of his doctors put it, ''a child on the margins of viability''? Just a decade ago, a baby Luke's age and weight probably would have died immediately after birth, but advances in neonatal medicine have significantly increased premature babies' chances of survival, thereby creating a moral and legal quagmire.

In April, the Texas Supreme Court heard arguments in a case involving a decision made by a Texas hospital to resuscitate a child against the parents' wishes. The mother in that case was 23 weeks pregnant when she went into sudden labor. After apprising the parents of the long chances against having a healthy baby, doctors asked them if they wanted the child to be resuscitated at birth. They said no. When the child was born, the doctors overrode the parents' decision. Today the child is 12 years old, severely retarded and nearly blind. She has never been able to talk, walk or feed herself. Two years after her birth, the parents sued the hospital, arguing that they had the right to make medical decisions about their child's fate. They won in a trial court, the hospital appealed, the decision was overturned and the case landed in the state's highest court, where it is still pending. It has been a bruising fight, with wheelchair-bound protesters accusing the couple of promoting infanticide.