Heroics AND Heartbreak : Doctors can now save some of the tiniest, sickest babies. But should they? Parents want to have a say.

After the 1983 publication of “The Premature Baby Book,” author Helen Harrison’s mailbox began to overflow. There were stacks of letters from parents who wanted to share their experiences of having a newborn who enters the world desperately ill in a neonatal intensive care unit.

Many parents wrote that they were grateful for the care their babies received, says Harrison, whose own premature son was born in 1975. Other parents, however, were “quite unhappy about the way they and their babies were treated.”

The letters and Harrison’s own experience of raising a disabled child stood in stark contrast to the familiar images of joyful preemie reunions staged by hospitals, and to the media stories and movies of the week of “miracle” babies saved by medical talent and technology.

Disconcerted, Harrison pulled some of the letters from her files in the fall of 1991 and sent them to Dr. Jerold Lucey, editor of the medical journal Pediatrics.

“I wanted someone who was important in the field to have this feedback from parents,” Harrison says.

Lucey took notice. As did the nation’s neonatologists when he published a landmark paper in last month’s issue of Pediatrics. The authors--10 parents of premature babies--propose big changes for the nation’s neonatal units.

In the article, they suggest that all is not well in a field usually portrayed as routinely producing miracles and heroics. “The time has come for the medical community and the media to present a more sober and realistic appraisal of what neonatal medicine can and cannot do,” the parents wrote in the paper, “The Principles for Family-Centered Neonatal Care.”

The parents’ comments are timely because the field of neonatology has entered an era of serious introspection.

“There is a growing tone of sober re-evaluation, a sense that neonatology has backed itself into some difficult ethical and medical corners and might benefit from informed public and parental input,” says Harrison of Berkeley, who helped organize a small June, 1992, conference for parents and neonatologists that led to the Pediatrics article.

“There is a hard look going on all over the place now,” agrees Dr. Gabriel Escobar, of the Permanente Medical Group Division of Research in Oakland, who has studied the long-term follow up of neonatal patients. “People are trying harder to look at what works and what doesn’t.”

The parents’ concerns deal with a range of neonatal care issues. But in perhaps the most serious charge, a growing number of parents say they are left out of the decision-making that governs their children’s fate.

Embedded deep in the debate is the most gut-wrenching choice a parent could make: whether to allow extremely premature, tiny babies--some of whom could fit in the palm of your hand--to die at the outset or to treat them aggressively on the slim chance that they will fare well. In conversations about neonatal care, the issue hangs in quiet suspension, like the docile eye of a hurricane--rarely discussed directly, but storing the energy for the entire issue.

Opting for treating these underweight, underdeveloped infants is often the beginning of a long, painful chain of events for both the child and the parents.

Many parents claim that they are kept in the dark about such key issues as the pain the baby might be experiencing and the long-term outlook for the child. They complain of “recklessly applied technology” and doctors who ignore the long-term consequences of the treatment, such as the pain, surgery and disabilities these “saved” children suffer later.

“There is always an element of uncertainty in this type of decision-making. There is a chance that if they call off the heroics, they might be losing a child who might have had a perfectly good life,” says Amita Sarin, a Washington, D.C., woman whose son was born at 30 weeks gestation and is blind and retarded.

“On the other hand, if they persist, the infant may grow up to have serious problems that will shadow the rest of its existence. Some parents would rather take the first risk and some the second. For a physician to insist on tossing the coin is, I believe, an arrogant transgression.”

But neonatologists say their actions are guided by several factors:

* The doctors’ tendency to use any available technology in an emergency, even if the long-term results of that technology are unknown.

* Federal Baby Doe laws passed in the early 1980s that threaten legal consequences of not treating or resuscitating a baby, even a baby likely to die anyway.

* The lack of long-term research and statistics to guide them, which in turn would help them guide parents.

Advances in Treatment

In general, neonatology has excelled in the past two decades in treating premature babies born at 28 weeks gestation and later, experts say. Treatments have been developed to prevent common respiratory diseases, heart ailments and other maladies.

Yet, many of the tiniest and sickest babies--born in the precarious time of 23 to 26 weeks gestation--still sometimes die after months of tortuous treatment, while the survivors are often discharged to a lifetime of lingering medical and developmental problems, including mental retardation, cerebral palsy and blindness.

In an article in the September, 1992, issue of Birth, Michigan State University epidemiologist Nigel Paneth says the credibility of the field is eroding.

Although neonatal medicine has excelled at treating premature babies born between 28 and 34 weeks, Paneth says: “In failing publicly to acknowledge the limitations of its technology at lower gestational ages and birth weights . . . the discipline of neonatology vitiates its accomplishments and loses support for its very real achievements.”

Part of the problem, experts say, is that there are few good long-term follow-up studies because of their cost and difficulty.

“The weakness of the field has always been the huge expense--not just in money, but in time and effort--to find out what happened to someone 10 years later,” Lucey says. “So many of these babies (particularly those born to teen-agers or drug-addicted mothers) go into lives of complete social chaos, and you can’t find them later.”

In his research, Escobar found that babies are followed for too short a period, usually a year or less, and many problems, such as cerebral palsy, are not yet apparent. The studies are also enormously costly.

“My concern has been that sometimes people have been wildly optimistic or wildly pessimistic with no data,” he says.

And, says Harrison, some parents have often felt--but could not prove--that the statistics they are given are misleading.

For example, she says, it is not uncommon for parents to be told that their child has an 80% chance of survival without being told that the chances the child will be retarded or have permanent health problems are very high.

“Many parents and a growing number of physicians are skeptical about the outcome statistics,” Harrison says.

One father of premature triplets says doctors refused to tell him and his wife what the consequences were of bleeding in the brain, a common problem of very premature babies.

“Our doctors weren’t willing to explain what a grade-four intraventricular hemorrhage (a bleed in the brain) was or tell us specifically what had happened inside the brain,” says Bob Thorson, a Minneapolis parent who contributed to the Pediatrics article. “We . . . could get nothing except some falsely optimistic information on what the prognosis was for a kid with a grade-four IVH.

“These things were intentionally kept from us. It keeps parents pacified until they are out of the NICU, and then (the neonatologists) are long gone by the time the other shoe drops and (parents) find out what the implications really are.”

Future Shock

Parents of preemies say they are shocked when side effects of premature birth continue, sometimes for years after the child leaves the hospital.

Ronnie Londner, a Miami woman, gave birth to her second child at 29 weeks. The child was released from the nursery after 80 days and had continuing health problems. He died suddenly at age 8 of a brain cyst thought to have been related to bleeding in his brain shortly after birth.

“The only medical decision that we were even able to make for our child while in the hospital was whether or not to have his organs donated,” said Londner, who also contributed to the Pediatrics article.

Doctors, however, say they are often in a no-win situation, dealing with dozens of parents at a time, each couple having different views and wishes.

“If the outcome is bad, the family bears the brunt. But neonatologists are also trapped an awful lot,” Lucey says. “You get parents who don’t want the baby to live and you get parents who want the child to live no matter what.”

Parents of preemies come from all walks of life, he notes, with some better able to make decisions than others. A majority of the mothers are single teen-agers.

“I really agree with the concept that the parents should be involved in the care of their baby,” says Dr. Marilee C. Allen, a neonatologist at Johns Hopkins Hospital and the author of a recent study on neonatal outcomes. “But the medical decision-making is very complex.

“And I think it is unrealistic for parents to think that they should be the ultimate decision-makers about medical decisions. I’m not talking about whether or not to resuscitate the baby; that is a values decision and the parents should be involved. But whether or not to use a certain drug, that takes years of medical training to make that decision.”

But parents claim that they could participate more fully in decisions if they were given accurate data and if the doctor presented information in an unbiased manner. Some parents are aghast in particular at procedures performed on their infants without pain medication, Harrison says.

In the Pediatrics article, parents said doctors should also acknowledge whenever great uncertainties surround the treatments they recommend. “It is common for new treatments to be introduced into practice in the NICU without controlled evaluation to assess their harmful or beneficial effects,” they wrote.

But using restraint is difficult when a child’s life hangs in the balance, Allen says.

“On one hand, I think it is important when new treatments become available to study them carefully. I think harm can be done by rushing in,” she says. “But we are also compelled, when we think there is a treatment available that we think will help babies survive, to use it.”

Laws Versus Technology

Physicians also say Baby Doe laws have had a tremendous impact on the liberal use of technology.

Londner said her infant’s doctors were always fearful of talking openly about refusing further treatment for the child.

“When we tried to discuss options for our son’s care, we were told by the neonatologists that we couldn’t speak about this out in the open,” she recalls. “So the pediatrician and I ended up having discussions in the linen closet--the only place in the NICU where we were allowed to discuss frankly what was happening.”

Baby Doe laws are part of the federal child abuse amendments of 1983, which specify that withholding treatment because a baby might be retarded or have health problems is considered child abuse. Harrison says there are no particular penalties associated with the laws, but doctors still feel uneasy about them.

“It’s had an enormous impact in that doctors have changed their practices because of it,” she says. “Some are quite frightened by it and feel they could be prosecuted.”

In a 1983 article in the New England Journal of Medicine, one-third of the responding physicians believed that Baby Doe laws compelled treatment that was not in the best interest of the child. Two-thirds said the law failed to take into account the suffering of babies.

“I don’t really know what the true effect (Baby Doe laws) have on my behavior,” Allen says. “I do know I feel great pressure from society--I think that comes from Baby Doe laws--to provide all technology to all people at all times. I think the Baby Doe laws have led to a reluctance to talk about the full consequences of some of the decisions we make.”

In the Pediatrics article, parents call for society to revoke Baby Doe laws. But it’s up to neonatologists to initiate many of the other suggestions. And many may be reluctant to change.

“To neonatologists, it seems as if there is sort of a backlash going on,” Lucey says. “They are fairly sensitive to these articles and TV programs that appear to be attacking the coldness of neonatologists.”

But Harrison insists that the paper is meant to be constructive and believes that many more doctors are open to changes.

“I think the defensiveness is breaking down,” she says.

But some neonatologists point to promising changes in care already being made that give parents more latitude and babies more comfort, including encouraging the feeding of preemies with breast milk, allowing babies to be touched and held by parents, avoiding the harsh lights and noise that might adversely affect babies, and planning better so parents are adequately prepared for caring for their babies at home.

But the ultimate decision to withhold treatment from an infant will not be resolved easily. So thorny is this issue that many experts are opposed to the idea of guidelines proposed by some neonatal experts that, based on the best current data, suggest when preemies should not be resuscitated or treated with life-sustaining measures.

Instead, others advocate greater use of advanced directives, documents that have been popular among adults to control medical care at the end of life. Harrison, for example, suggests that all parents receive such a document and information during routine prenatal care.

“As far as guidelines on which babies should be resuscitated, I don’t think that is going to happen because I don’t think it’s possible to predict which babies will survive,” Escobar says. “I think this will continue to be a difficult decision for both the parents and physicians.”

Babies at the Margin of Life

Babies born at 23 and 24 weeks gestation face a very uncertain future. According to one recent study, many babies born during that time frame died, while those who lived had a high chance of suffering permanent abnormalities. At 25 weeks gestation, however, the outlook improves with far fewer deaths and fewer abnormalities detected at six months of age.

Source: The New England Journal of Medicine.