Life at 21 Weeks: Immature Lungs and a Handful of Fragile Skin and Pain

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In the case of Amillia Taylor, who was born with a mild brain hemorrhage, respiratory problems and digestive problems, she will need to be constantly monitored at home. But, she had a strong will to live, said her physician, Dr. William Smalling. "Her future looks bright at this point," he said.

But, Dr. Cole said, that often this is not the case, and families are often misinformed by friends or television programs. Families often don't want to hear about problems. Or what they have seen on television or heard from friends is often it is not transferable to their own baby's situation.

"They all want hope," said Dr. Cole. "The baby represents the future for parents, and that is a common theme. But most families have never experienced a premature birth. It is important for pediatricians to speak with the families and engage them in talking about their baby. My approach is we do everything we can for the baby, but if we get to the point where there is no chance for survival, or what we are doing is causing the baby pain."

Pain in these tiny infants is not as obvious as in older children, so doctors must look for clues: changes in their vital signs, heart rate or amount of oxygen in the blood stream, or grimacing or body movements.

"Parents want everything possible done for their baby," Dr. Cole said. "We let the baby be boss of this. If he comes out and he is vigorous and looks around and appears older, we go forward. Generally, we try to talk things over and air on the side of giving a baby a chance."

Baby Doe Law

In the United States, the federal Baby Doe Law was passed in the 1980s to protect children with Down Syndrome and spina bifida. The law requires the doctor to try to save a baby unless it is "imminently dying or with most of its brain missing," according to Arthur Caplan, chairman of the department of medical ethics at University of Pennsylvania.

But, said Caplan, "At that time, it didn't apply to babies this small. There is a kind of ethical loophole here. The truth is, the law gives tremendous discretion to doctors, families and hospitals."

Other nations have policies on the treatment of premature babies. In The Netherlands, babies under the age of 26 weeks are not allowed to be resuscitated. Just last year, after two years of research, Britain's Nuffield Council on Bioethics issued recommendations on treating infants younger than 22 weeks.

"We don't think it is always right to put a baby through the stress and pain of invasive treatment if the baby is unlikely to get any better and death is inevitable," said professor Margaret Brazier, who chaired that ethics committee.

The British report gives guidance on how parents should resolve arguments with doctors over the fate of their babies. It rejects suggestions that active steps be taken to end life.

"Part of the problem is that despite advances in modern medicine, it is not always obvious to doctors, which babies will survive and thrive," she said. "Natural instincts are to try to save all babies, even if the baby's chances of survival are low."

This was not the case with Brian Dunlap, now a healthy 24-year-old snowboarder and New Hampshire dairy farmer who was one of the youngest babies ever saved at Denver Children's Hospital in 1983. Born 840 grams at about 26 weeks, he was given a 10 percent chance of surviving.

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