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THE MIRACLE AND THE SHAME:
How an Unknown Law Made a New World of Pain

In 1982-84, the Reagan administration and its allies rammed through Congress a law that took away a traditional right of families -- the right to decide if a severely handicapped newborn would be allowed to die in peace.  Then a welfare reform in 1996 denied public assistance to survivors.  In other words, the US government created a population of a quarter-million handicapped kids, then turned its back.  

Published as a four-part series in The American, this story won the National Headliners and Clarion Awards in 1998.  But the Baby Doe laws are still on the books.  The introduction to the series is published below.  If you feel concerned about this issue, please do not hesitate to contact us.

There were times when Carol Castellano wondered if her daughter would have been better off dead.

Born in 1984 after only 23 weeks in the womb, Serena Castellano is one of more than a quarter of a million disabled children who owe their lives to ink: The Baby Doe legislation of 1982-84, which made it a crime for doctors to do less than the maximum to keep even the least tenable prematurely-born infants alive.  

The quarter-million children who would have been left to die before Ronald Reagan signed them alive, and their families, frequently found themselves alone, overwhelmed by pain, worry and care -- burdens made even more onerous by the lack of government support.  The same government that snatched these babies them back from death left them crippled - and heartlessly abandoned them and their families.

Like so many others in this virtually unnoticed, unreported population, Serena Castellano would not have survived the delivery room only years earlier. Like so many others, Serena survived to suffer.  Born blind, brain damage prevented her from speaking or chewing, and pulmonary and abdominal abnormalities required six operations in her first eight months - not one with anesthesia.

"If I'd had some way of knowing what [extremely premature] babies endure, I wouldn't have wanted my baby to go through that," said Carol Castellano, president and co-founder of New Jersey Parents of Blind Children. "I adore my daughter. I'd never wish her away. But if I were in premature labor, I wouldn't go to a hospital. I'd stay home and let nature take its course."

Mother and daughter were among the first to be caught in a wave of radical change driven by dramatic advances in medical technology, and by fierce competition for prestige and profits within the burgeoning field of neonatology - the medical specialty devoted to the tiniest babies.

Swept up in this wave are doctors ambitious to save children's precarious lives, parents who question the wisdom of these efforts - and the children who are lifelong victims.

The impetus for these changes was a little-understood but far-reaching federal mandate - the Baby Doe regulations of 1982-84.

They began with a national scandal that erupted in Bloomington, Ind., when the parents of an infant born with Down syndrome and an operable but life-threatening condition elected to withhold surgery that might save the child. As a local prosecutor and right-to-life groups petitioned the courts to force treatment and lost, President Reagan directed the Department of Health and Human Services to create rules to ensure no infant ever again would be denied maximum care.

By 1984, the Child Abuse Prevention and Treatment Act ordained that aggressive treatment of premature infants must be applied, regardless of the prospects of future disability or the wishes of parents. The only exceptions allowed were if "the provision of such treatment would be virtually futile in terms of the survival of the infant, [and] inhumane."  But in practice, there were hardly any exceptions.

To ensure that doctors erred on the side of life, posters went up in hospitals, offering a hotline number to anyone who believed that a baby who might survive was being denied treatment.  And those numbers were called, sowing terror among medical professionals that continues to this day.

At best, the Baby Doe laws spawned half a miracle. Largely due to the resultant advances in neonatology, U.S. infant mortality - the percentage of babies who die in their first year - reached an all-time low in 1995 (the last year for which data are available) of 7.9 per thousand.

Even more striking is the increase in the number of survivors of premature birth. According to the National Center for Health Statistics, in 1980 - before Baby Doe took effect - about 36,000 live births involved infants born at a "very low birthweight," under 3 lbs., 3 oz. (Five lbs., 8 oz. is considered minimum normal birthweight.) In 1995, there were over 52,000 such births - a 44 percent increase, while the overall number of births rose only 24 percent. And nearly half of those babies were in the "extremely low birthweight" category, under 2 lbs., 2 oz. According to Dr. William A. Silverman, one of neonatology's founders, few of these miracle babies of the popular press - super-preemies - would have survived only two decades ago.

Yet the number of disabled survivors has also reached a record level - as one study describes it, an "unavoidable side effect of the increasing success of neonatal intensive care."

Of the 25,000 tiniest babies born each year, between one-sixth and one-third will be severely disabled as a consequence of failure of their immature lungs, liver or other organs. Another one-fifth to one-third will suffer what is termed "mild" or "moderate" disability, anything from mental retardation and partial blindness to behavioral or psychological disorders.

These statistics do not even suggest the true scope of the problem, says Dr. Lucille Perrotta, a New York neonatologist. "It's probably closer to 100 percent," she asserts. "They all need services when they go home. A lot of pediatricians don't want to take care of these babies. They're difficult, time-consuming. They get sick a lot."

The toll is heaviest among the most miraculous survivors, those born after only 22 or 23 weeks in the womb at weights of a pound or less, now routinely "saved" in neonatal intensive care units.

Dr. Ronald Hoekstra of Children's Healthcare in Minneapolis is proud that he has saved seven 22-weekers born at his hospital since 1991, a survival rate that is actually among the best in the country. However, among those seven babies, the toll is startling: "One is normal, one is mildly disabled, three are severely disabled, and two are open to question," he said.  He also noted that of the 50 percent of his hospital's 23-weekers who survived, a full 29 percent were severely disabled.

1982-84, between 240,000 and 430,000 disabled babies have been brought into the world, according to our calculations (based on birth weight statistics and morbidity studies) -- a figure confirmed by Dr. Patricia Shiono, director of research in epidemiology at the Center for the Future of Children in Los Gatos, Calif. Definitive statistics are unavailable because many hospitals do not follow up on survivors of neonatal intensive care.

This much is certain, said Jonathan Muraskas, assistant director of neonatology at Chicago Loyola University Medical Center: "We're creating a new population."

And this population is growing. Dr. Michael West, a researcher in special education and rehabilitation at Virginia Commonwealth University in Richmond, reports that in Virginia's schools, "I'm seeing more kids with more health problems - liver diseases, lung, heart disease. There are more children born with health impairments - mental retardation and physical disabilities. Before, a lot of these kids were allowed to die naturally."

"I do struggle with this, and I don't have the answer," said Dr. Marilee C. Allen, a neonatologist at Johns Hopkins University School of Medicine in Baltimore. "I think what I'm supposed to say is, 'Of course we should do whatever we can to help the baby survive.' In practice, that's what I do. But I despair when I see parents so overwhelmed by the business of living with a disabled child."

Is half a miracle better than none? Fifteen years and a quarter-million disabled children after the federal government mandated aggressive treatment for the most prematurely born infants, the answer remains uncertain. But we do know this: No other country in the world has mandated such aggressive treatment while neglecting to share responsibility for the social and economic consequences.  

Outside of the medical community and families whose lives have been irrevocably altered, Baby Doe is  a national non-issue, all but hidden from public view.

Two schools of thought are in conflict here, both claiming to act in the name of compassion . Focused on the infant's right to life, one side believes that where there is the slightest hope that a baby will beat the odds and live, that chance must be taken.

The other side holds that only those who must live with a severely disabled child - a burden that can weaken or destroy families - should have the right to demand maximum aggressive care to ensure the child's survival. This stance takes the family's and the infant's future quality of life into account.

Only a minority of physicians subscribes to the latter view - and not only because under current law anything less than the most aggressive treatment can provoke prosecution for child abuse or manslaughter.  Trained to defeat death, doctors find it profoundly repugnant to withhold treatment. Some believe that aggressive treatment of the tiniest babies must continue for the sake of scientific knowledge. 

A few do not care what happens when the infant leaves the hospital. Diane Maroney of Parker, Colo., is a former neonatal nurse whose four-year-old daughter, MacKenzie, born at 25 weeks, remains stricken with life-threatening chronic lung disease. Maroney will never forget the bedside words of her daughter's neonatologist as he explained why he'd overruled their tearful decision to abjure aggressive measures: "We are doctors, and we're here to do what doctors do, regardless of whether or not we ourselves have to live with the long-term consequences."

Despite her love for her daughter, Maroney says that if she learned her next child were expected to arrive very prematurely, "I would not save her. I don't believe putting them through the pain and suffering is worth it."

Only now, as results emerge from a mass of new research on the long-term outcome of neonatal intensive care, are the consequences of the law becoming clear.

Previously, "if you saved the baby, and he was discharged from the neonatal intensive care unit, he was a success," says Dr. Charles Bauer of the University of Miami School of Medicine. "It's totally changed in the last five years, a dramatic change: People want to know the measures of what they're doing."

The startling rise in cerebral palsy - after mental retardation, the second most common disability afflicting prematurely born children - is one of those measures, and it is clear. On the verge of eradication 20 years ago, cerebral palsy now strikes more than two out of every thousand infants - double the rate in 1980 before Baby Doe became law.

The reason: Among the tiniest babies, the rate of cerebral palsy is currently about 20 percent. "A large percentage of extremely premature babies has brain injuries, and cerebral palsy is one of the major consequences of brain injury," explains Dr. Murray Goldstein, medical director of the United Cerebral Palsy Research and Educational Foundation. As the number of babies born extremely prematurely grows, the number with cerebral palsy has grown apace -- a consequence that was predicted by medical researchers before the passage of the Baby Doe Laws.

The more closely researchers look, the more side effects they find - years after babies leave the intensive care ward. A new study at Wake Forest University has found that at the age of 8, 40 percent of a group of preemies with chronic lung disease - a frequent complication of premature birth - also exhibit attention deficit disorders, behavior problems, hyperactivity and aggression, compared to 6 percent of their peers.

"Hyperactivity is common in extremely premature babies, but it's regarded as a minor disability," commented Dr. Guan Koh, an Australian researcher. "But three hours with a hyperactive 3-year-old who was born at 26 weeks left everyone in our follow-up team emotionally exhausted. The mother was distraught. The point is that a 'mild' disability can be devastating to the family."

Hoekstra's follow-up studies at Children's Healthcare found that by the time they were in the third grade, 15 percent of former 23-to-26-week super-preemies exhibited "severe impairment." An even higher percentage suffered "mild-to-moderate" impairment, such as learning disorders.

There are no known cures. In January 1997, the Journal of the American Medical Association published the third chapter in an unprecedented study of 874 prematurely born children. At age 8, "[disabled preemies] still had IQ and vocabulary scores substantially below expectations based on standardized norms."

And as the human price of the neonatal revolution continues to rise, so does the financial cost. 

The Center for the Future of Children estimates the current annual cost of neonatal intensive care itself to be $2.5 billion, with total costs for survivors - including follow-up treatment, special education, and other needs - estimated at $10 billion annually. Ten percent of all health care costs for children is thus spent on less than two percent of the childhood population, limiting medical and educational resources available for other children.

For individual families, the price of half a miracle can be ruinous. Last year, doctors at Cedars Sinai Hospital in Los Angeles saved a newborn who weighed just 13 oz. Six months and $1 million in medical bills later, the infant was discharged. He died two weeks later, at home with his family.

"They were lucky - they had indemnity insurance," said Charlie Lahaie, a spokesperson for Cedars Sinai. "Can you imagine paying a $1 million bill and your baby's not even alive?"

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