"I'll Be His Mom for a While..."

By NANCY GIBBS

Chaplain Mark Weiler is holding a seashell filled with purified water. Normally it's the parents who ask for him, when they want their baby baptized and don't think they can afford to wait. But this baby was abandoned weeks ago, and is due to go into surgery in an hour; it was the nurses who called and put aside their work to gather around the incubator. Weiler can't pick up this child, lying so still, like a broken marionette, so much tape holding so many tubes. He dips his finger in the water and touches the baby's forehead. "I baptize you, Christopher, in the name of the Father, and of the Son, and of the Holy Spirit." And they say a prayer.

Christopher is six weeks old, and had been doing fine. His mother was a coke addict; he was born at 24 weeks, weighing about 1 1/2 lbs., but once he was stabilized, he came off the ventilator and started feeding. "When I started back in 1972, a 2-lb. baby had a 95% chance of dying," says Dr. Ronald Goldberg, chief of the neonatal-intensive-care unit. "If he lived, the damage was pretty severe. Now a 2-lb. baby has a 95% chance of surviving, and the outcomes we're seeing are very good."

After a few weeks in the NICU, Christopher even got moved down the hall to the transitional nursery. Then on Sunday morning he started looking sick: his belly was swelling; he showed signs of a massive infection; and he was sent back to the intensive-care unit.

Dr. Henry Rice operated at about 3 a.m. Monday, and what he saw wasn't good. "Maybe 95% of the bowel looked questionable," he says. "Sometimes you can remove the bad part, and he can fight off the infection. But this child's whole gut was involved." They stabilized him, able only to watch him over the next few hours, hoping for some improvement.

There was a very slim chance that if enough of the baby's intestines were viable, the doctors could keep him alive long enough to perform a bowel transplant that might save his life. Here, however, the doctor's dilemma is ethical as much as medical. Is it fair to set out on a course of treatment that would involve enormous risk and pain, a year in the hospital at least and a very difficult life thereafter? "Just because you can do something doesn't mean you should," explains Dr. Goldberg. "We have to keep a level head and treat the child as if it were your own. What would you want for your own kid?"

And if the doctors got over that hurdle, there is the fact that it would all cost about $1 million, most of which Duke would pay out of its pocket. Christopher's medical care has already cost $192,500, of which Medicaid will reimburse only about $81,000. When money is tight, research crucial and hard to pay for, and there are many children to save, is this the best use of resources?

The doctors never give up, and at 10:45 a.m., Dr. Rice operates again. This time the news is even worse, and all options are foreclosed. "He essentially had no intestine beyond the stomach," says Dr. Rice. "Doing anything more at this point would just be futile therapy." All they could do was increase the morphine, ease the pain.

It's Stephanie McCallum's day off, but the other nurses call her anyway. They have this understanding that if anything happens to one of their babies, they want to hear about it. She arrives at the unit, washes her hands, puts on her gown and goes over to the incubator where Christopher is sleeping. "I'll be his mom for a while," she says.

McCallum remembers the day Christopher's birth mother came to visit, sat at the bedside and cried, before signing away her parental rights for good. "She told him she was so sorry," the nurse recalls. "She knew that her drugs had caused him to be born early." If the nurses make judgments, they are laced with forgiveness. "She knew she couldn't handle him, so she gave him up. It says a lot about her that she knew her limitations and what was best for him."

Next to arrive is Mary Miller, all silvery sorrow, to hold him one last time. Miller is Christopher's "lap mom," the volunteer who has been coming since he was born to rock him, or just sing and talk to him when he was too sick to hold. Miller is a great-grandmother herself, an Air Force wife who moved 23 times in 32 years, and she has been coming to the NICU for the past 12 years. "I have no idea why I am able to do this," she says quietly. "Not everyone can, and that's no reflection on them. It's just a strength that God gave me."

The blanket with the pink and blue balloons swallows the tiny child in Miller's arms as she sings and whispers, "Jesus loves you..." McCallum sits next to her, rubbing her neck. They both stroke Christopher on the soft top of his head.

Even as they sit and rock him, there are tiny celebrations everywhere: a baby boy who almost didn't make it through the night back in June is getting ready to go home with his mom; another is coming off her ventilator; another is finally starting to feed. "Most of these babies do great," says nurse Shannon Brown. "They go home to families who love them. This is just such a sad day here."

At 3:12 p.m. the nurses gently remove the pink tape mustache that anchors Christopher's tubes in place. The skin on tiny babies is so fragile, like wet tissue paper, that even medical tape can take it off. As alarms start going off, they turn off more monitors. Miller slips away to help pick an outfit for Christopher to wear.

Now McCallum is listening for a heartbeat and can't find one. She hands another nurse her stethoscope; then they call for Dr. Goldberg.

When Christopher finally dies, the care is no less gentle. They remove the last of the tapes and tubes to bathe him; they press his hands and feet onto the ink pad, to send the tiny prints home to an aunt who has asked for the "bereavement package"; they carefully clean the hands and feet and give him a bath, dress him in a tiny blue gown, with a white bow. It makes no difference to these nurses that there are no parents there to watch. They are doing this for the baby, and for themselves.

--By Nancy Gibbs