In the sixth month of her pregnancy, Kristina Fallon's blood pressure shot up dangerously high, and she was admitted to Baptist Medical Center in Columbia, SC. She suffered a seizure that night and wasn't fully coherent until the next day, when she was alarmed to learn that she'd become a mother. Doctors had delivered a 1-pound, 13-ounce baby by cesarean section -- a daughter, whom she couldn't touch and who had to be respirated, medicated, and threaded with wires and tubes in order to survive. When a nurse wheeled her to the incubator for a look at the tiny kitten of a girl she would name Faith, Fallon was aghast. "Why are you doing this?" she asked the neonatologists. "Do you have to do this? Why don't you stop?" The doctors said they couldn't stop the support measures needed to sustain so flickering a life without a court order. So Faith spent the next seven months in the womb of the neonatal intensive-care unit (NICU).
The NICU is a universe of beeping, whining machines, where tiny babies, their organs not fully formed, veer in and out of such devastating conditions as periventricular leukomalacia, intraventricular hemorrhage, and bronchopulmonary dysplasia -- the complex hazards of prematurity and its care. "My baby's doctors called life in the NICU a roller-coaster ride," wrote one parent in a post to an Internet preemie-parent group, "but it was more like pinball played badly."
By the time Fallon could take Faith -- who weighed about seven pounds -- home, the hospital bills totaled half a million dollars. Still, everything was not all right. Three years later, Faith can neither walk, nor crawl, nor sit up. She frequently needs oxygen, gets sick often, and eats through a feeding tube in her belly. Yet she also likes to be read to and to watch her favorite videos. Fallon, a waitress, gets help from Medicaid and has often sold her own blood to raise gas money for trips to the hospital.
The suffering of Fallon and her baby, and of hundreds of parents and children like them, constitutes the darker side of the "miracle baby" story -- one of steady improvements in medical technology for newborns -- that has captivated our attention in recent years. Innovations in neonatal medicine -- which began with the warm incubator in the 1950s and progressed through ventilators, intravenous protein and fat nutrition, and various prenatal and postnatal drugs and treatments in the 1980s and early 1990s -- have steadily pushed back the age and the size at which doctors will fight for a life.
Twenty years ago, preemies born before 28 weeks or weighing less than 1,200 grams (2 pounds, 10 ounces) usually didn't survive in American hospitals. Today, neonatologists routinely save babies born at 24 weeks; even infants as young as 21 weeks have been kept alive. At the same time, the risk of premature birth has increased because of drug use and poor prenatal care at the bottom of the socioeconomic ladder, and a proliferation of fertility treatment-induced multiple births (which frequently take place early and yield underweight infants) at the top.
This means that more and more often, situations arise in which someone has to make the call about whether to try to sustain a fragile new life. To cite one powerful statistic, in 1960, 10,241 Caucasian babies were born weighing less than 1,000 grams (2 pounds, 3 ounces) in the U.S. -- but only 67 survived. In 1997, there were roughly 15,000 births in that category, and well over 10,000 babies survived.
The trouble is, the life saved may be a miserable one. Micropreemies -- born at 25 weeks or under and generally weighing 750 grams (1 pound, 8 ounces) or less -- have a 50 to 80 percent chance of survival. Many of the survivors end up with severe disabilities. "Our treatment of them is somewhat experimental," says Nigel Paneth, M.D., a pediatrician and epidemiologist who studies prematurity at Michigan State University. "The risks of a severe outcome in this group are not small. And in this zone of uncertainty, parents should be brought in on decisions, especially if they want to be."
Kristina Fallon loves Faith and lives for her -- and yet she's only a little ashamed to say she wishes the doctors had allowed nature to take its course instead of keeping her daughter alive. "I'm glad to have my child to love, but at what cost to her and my family?" she asks. "The doctors aren't the ones who tend to a child who needs machines to live. They're not the ones who will have to tell her that two feet in any direction is as far as her tubes will reach, and therefore that's her world. They're not the ones to watch the suffering of a child twenty-four hours a day."
In fact, there's a growing consensus in the field of neonatology that doctors pushing the edge of the envelope must inform and consult with parents before that happens -- a practice that wasn't routinely accepted in the past. Parents are gaining a greater say, but slowly, in whether to save the smallest infants and when to withdraw support.
SAVING LIVES, AND THE LAW
In part, the aggressive treatment of micropreemies has a legal basis. In the early 1980s, in response to reports that doctors were failing to intervene on behalf of babies with genetic disorders like Down syndrome, the Reagan administration and various state legislatures pushed through the Baby Doe laws, which required hospitals to establish toll-free numbers that would allow anyone to report acts of euthanasia against newborns. The enforcement of such laws has since largely been replaced by state- and hospital-wide ethics guidelines, but doctors and parents still operate in a climate of legal uncertainty when making treatment decisions.
No one knows this better than Greg and Traci Messenger. At 3 A.M. on February 8, 1994, Messenger was carrying the couple's third child when she went into preterm labor and was admitted to Sparrow Hospital, in Lansing, MI. That night, a neonatologist informed them that the baby they knew was a boy had roughly even odds of survival. If he survived, he would likely suffer a brain hemorrhage of a type that frequently causes crippling brain damage. Knowing the odds, Greg Messenger, a dermatologist, and Traci, a stay-at-home mom, told the doctor that under the circumstances, they didn't want extreme measures taken to keep the baby alive. A few hours later, baby Michael was delivered by cesarean section at 25 weeks. He was limp and purple from asphyxia -- far from vigorous -- but a physician's assistant, despite the Messengers' do-not-resuscitate request, rushed Michael to the NICU and put him on a respirator.
Greg and Traci (on a gurney) followed him into the nursery and pointed out their request. When the physician's assistant hesitated, Greg and Traci waited for the doctor to arrive, and then asked to be alone with the baby. After everyone left, Greg disconnected the respirator and handed his son to Traci, who held him in her arms for the ten minutes or so until he died.
Two weeks later, the hospital notified the Messengers that they were being investigated for murder. Greg was charged with manslaughter and faced up to 15 years in prison, but was found innocent by a Lansing jury in February 1995. He and Traci sued the hospital for malpractice; they plan to use any money they get to create a resource center for parents facing a similar dilemma.
Traci, who has since had a healthy boy, gets calls daily from women caring for disabled children. Sometimes the physicians ignored their decision not to resuscitate very early babies. In other cases, the women feel their doctors failed to realistically portray the future. "Parents want the baby so badly, they're very vulnerable. The doctors say, 'Let's resuscitate, we can always withdraw life support later.' But once they set the train in motion, it's very hard to get off -- most doctors won't withdraw life support," Traci says.
Of course, there are good reasons behind this. For all the risks that prematurity creates, a large percentage of even the tiniest preemies turn out fine. In attempting to make decisions, doctors work from a table of probabilities that improve with each additional few days the fetus is in the womb. Neonatologists also reason that a horribly damaged baby usually won't survive more than a few days, even with ventilation. No matter what the probabilities are for a given gestational age or weight, it's almost impossible to judge the long-term outcome of any baby at birth. "And what any neonatologist and most ethicists would agree with is that once a child is born, he is entitled to ordinary medical care," says Norman Fost, M.D., a pediatrician and ethicist at the University of Wisconsin, in Madison. "You can understand why a parent wouldn't want a chronically disabled child, but that's not enough to withhold what has become standard medical treatment for anyone."
Some states and institutions are starting to adopt guidelines, which generally consist of a narrow gestational age range -- around 23 to 24 weeks -- in which doctors are instructed to allow parents to help decide whether to resuscitate. But some neonatologists shirk even these limits. Says Sheldon Korones, M.D., director of the Newborn Center at the Regional Medical Center, in Memphis, "Somewhere in the discussion, we started talking not only about how big the babies are, but how much they cost."
To be sure, the average micropreemie's nursery care alone costs more than $90,000, and the total hospital bill can easily top $500,000. But Dr. Korones dismisses those who'd factor price into the decision. "I'm primarily concerned about the individual I'm responsible for," he says. "Nobody can predict, in the delivery room, how he'll turn out. And because I don't have the scientific evidence, I opt for life."
Emma Young, mom to preemie twins Hope and Joy Chase, would agree with that sentiment. Born at 29 1/2 weeks, the babies had respiratory and heart problems. Young credits the doctors and nurses at the Johns Hopkins Children's Center, in Baltimore, as well as God, for helping "her two girls grow strong."
"Yes, there are kids I wish I had not saved," says Dr. Korones, who's been practicing for three decades. "But while I could put them in one room, I could fill a whole school with the ones I'm glad I saved." As for the burden of serious injury, Dr. Korones says, "You ask, 'Aren't we creating more handicapped?' And I say, 'Maybe we are and so what? Why should we want to kill them?'"
There's something grand and noble about such a stand, but some parents find it unreasonable. "The neonatologists aren't the ones who have to take the children home and care for them the rest of their lives," says Helen Harrison, author of The Premature Baby Book and mother of a severely handicapped son who was born prematurely and is now 23 years old. William A. Silverman, M.D., one of the founders of neonatology and a sharp critic of the field since his retirement several years ago, argued in a 1992 Pediatrics article that his colleagues cannot ignore the cost of caring for pain-ridden, crippled children to the children themselves, their families, and society.
In fact, health-care professionals may often be the least sanguine about very premature infants. A poll published in the Journal of Perinatology in 1995 revealed that 34 percent of the 1,131 neonatologists surveyed would not want their own premature babies treated as aggressively as they routinely treat the ones brought before them.
As substantial numbers of children who were very premature infants reach school-age, it's becoming clear that even those who have escaped serious illness are frequently plagued by learning disabilities. Brain scans of very young preemies look different from those of full-term infants, and the structural differences seem to correlate with troubles down the road. Rochelle Barsuhn, who co-owns a Minneapolis graphic-design firm, believed her daughter, Sophia, was one of the lucky ones: After being born in July 1994 at 24 weeks and weighing 1 pound, 7 ounces, she emerged from four months in the NICU without having suffered any catastrophic illnesses. "That's why it's such a shock to find ourselves in the position we're in now," says Barsuhn, who in 1996 published an optimistic memoir of her NICU experience titled Growing Sophia. Since then, she's realized that despite the positive accounts of Sophia's development given by the NICU staff at follow-up assessments, the child is developmentally delayed. Barsuhn's daughter could not speak intelligibly at 2 years of age and was learning-disabled and physically clumsy.
"Parents with disabled children love them," says Dianne Maroney, a NICU nurse and coauthor of Your Premature Baby and Child. One of her kids, Mackenzie, now 6, was born at 25 weeks. "But the life these families lead isn't okay. I know someone with twenty-eight-week twins who turned out severely disabled. She says, 'I love my kids but I hate my life.' It's hard for parents to be honest about that."
On a Sunday night in April 1998, Alan and Denise Johnston found their lives turned upside down when Denise, a software designer, went into labor at 24 weeks. Because the pregnancy was at the edge of viability, the doctors gave the Johnstons decision-making power. "They painted a pretty bleak picture," says Alan, an information specialist. "They said he had a seventy percent chance of impairment if he survived. They said one of us would have to quit our job. They said there was a high rate of divorce among couples like us, and lots of suicides. They said we had to make up our minds."
Because the Johnstons had recently cared for Denise's sister, left severely impaired by an aneurysm, they'd already reflected on what made a life worth living. "If you don't have some means to support yourself, then forget it," Denise says. Adds Alan, "My big fear for the baby was that nobody would love him." In the scant hours left to them, the couple decided: They could not expose their baby to these risks.
And then, before they really knew what had happened, the baby was out there -- eyes fused shut, skin red and translucent, but at 1 pound, 13 ounces, bigger than most 24-week-olds. "The NICU nurse was in the corner, waving the oxygen at us. The neonatologist came over and said, 'This is not the baby we talked about. He's breathing, he's vigorous.'" And when the Johnstons said they'd already made up their minds, the neonatologist made what sounded like a threat: "If I don't save this baby, a lot of people in this hospital are going to lose their jobs."
So Jake was put on a respirator, and the Johnstons were told they could withdraw support if his condition worsened. But by the time Jake began taking hard turns -- infections, a heart problem, a horrible thing called necrotizing enterocolitis, which required intestinal surgery -- Alan and Denise were in love.
Now, caring for 1-year-old Jake, the Johnstons don't know what to make of their ordeal. "I'm grateful that (the neonatologist) saved the baby, but her reason why was because she thought she'd be sued," Alan says, a little bitterly. Meanwhile, Jake, who's still attached to breathing and heart monitors at night but is reasonably healthy otherwise, tries to pull himself up on the coffee table.
Denise Johnston's explanation is more charitable: "I think she saved the baby because she thought he'd be okay. Then she made up that threat to explain why she was taking away our choice." She adds: "If they had made the decision and we got a really sick baby we would be angry, but I'm not sure it would have been wrong. I'm not sure you can ask a physician to do something she thinks is wrong."
"Good ethics start with good facts," says Norman Fost, M.D.. "If you don't have sound facts, you can't make sound ethical decisions." But the facts are rarely crystal clear when a very early preemie is on the way. Parents don't have the facts any more than doctors, and sometimes they don't even want input into the resuscitation decision -- preferring to leave the balancing of odds in the hands of the doctor. Says Maureen Hack, M.D., a neonatologist at Rainbow Babies & Children's Hospital, in Cleveland: "Each baby is different, each doctor is different, each parent is different."
In the end, it may be impossible to know what is right for these children. Saroj Saigal, a neonatologist at McMaster University, in Hamilton, Ontario, has asked 10- to 12-year-old children with disabilities resulting from prematurity to rate their quality of life, and most of them are positive about it. "They know nothing better," she says. "They were born this way." But that isn't the same as saying that a child should be put through months and possibly years of torture to be kept alive. And a neonatologist is no more qualified, or less self-interested, than a parent when it comes to making such a decision. "Nobody, but nobody, can really know or fairly judge whether it is more in a child's interest to remain on the ventilator, to receive continued CPR with each episode of bradycardia, and to get the whole compendia of treatments that he is provided, or whether it would be more in his interest to be given high-quality palliative care and be allowed to die peacefully," wrote John Lantos, M.D., a University of Chicago pediatrician and ethicist, in his 1997 book Do We Still Need Doctors? "But everybody, no doubt, will have an opinion."
Arthur Allen writes frequently for The Washington Post Magazine