THE VIRGINIAN-PILOT
Copyright (c) 1997, Landmark Communications, Inc.
DATE: Sunday, January 5, 1997 TAG: 9701030627
SECTION: COMMENTARY PAGE: J1 EDITION: FINAL
SOURCE: BY DEBRA GORDON, STAFF WRITER
LENGTH: 233 lines
April Lawrence, the smallest baby ever to leave Children's Hospital of the King's Daughters, celebrated her first birthday Saturday, as described in a story and pictures on this morning's front page. Not all babies born as early as April - 16 weeks before her due date - fare so well, and their treatment is a thorny ethics issue for the medical community:
Who lives, who dies, and who decides?
It is easy, in retrospect, to look at a gurgling 8 1/2-pound April Lawrence and say what a good thing it was that, on the night she was born, the doctor did everything he could to keep her alive.
She was so small that he could have slipped his wedding ring around her leg. She weighed about the same as three sticks of butter.
It is easy, as well, to look at April Lawrence today and accept that the $1-million-plus medical bill she ran up - much of it paid by state Medicaid - was worth every penny.
But doctors don't have the luxury of retrospect when faced with tiny babies like April. Only the knowledge that some early, underweight babies will spend the rest of their lives breathing with the aid of a ventilator, unable to walk, talk or eat. And there is no magic formula that can tell doctors, nurses and parents which 1-pound baby has a chance at a normal life, or which will face a life of unremitting pain.
Or which, despite everyone's best efforts and intentions, will die anyway.
Ten years ago, doctors would not have tried to resuscitate a baby born as early as April Lawrence. Now, medical advances have made it possible each year to save thousands of ``borderline babies'' - those born in the gray zone of life at 23 or 24 weeks' gestation.
That miracle, in turn, has given birth to complex ethical issues. Primary among them is: Should heroic measures be taken to save each of these babies?
More than half will leave the hospital with severe problems, which can include mental retardation, cerebral palsy, blindness and developmental complications. It can cost hundreds of thousands of dollars a year to care for them, and the care might be needed for their entire lives. And no one knows what the long-term outcomes for these babies are - such studies are expensive and difficult to complete.
``Who shall live and who shall die are really critical questions for neonatology,'' said Dr. Alan Fleischman, a neonatologist who is the senior vice president of the New York Academy of Medicine, a national think-tank for the discussion of health issues.
In some other nations, the government steps in to make the call. Denmark recommends that intensive care be withheld from infants below 25 or 26 weeks of gestation. In Sweden, those weighing less than 600 grams - just over a pound - usually are not resuscitated. In Australia, the parameters are birth before 25 weeks or weight of less than 650 grams.
In each of those countries, April Lawrence probably would not have lived.
There is no such policy in the United States. Some NICUs - short for neonatal intensive care unit - have their own protocols for which babies will be resuscitated and which will be wrapped in a blanket and given to their parents to hold while the baby dies.
Others attempt to save every child, regardless.
Some doctors override parents' pleas for extraordinary medical measures when it's clear that the baby is severely damaged or has no chance for long-term survival. Others see it as their mission to, as one neonatologist put it, ``do everything within their power to keep alive protoplasm.''
In the dimly lighted, hushed environs of the 56-bed NICU at Children's Hospital of The King's Daughters in Norfolk, the region's most advanced intensive-care unit for babies, the medical staff takes an individual approach.
They come to each child armed with the extensive medical knowledge and science of neonatology, and with the values and ethics they are constantly defining as part of their on-the-edge profession.
The men and women of the NICU are not perfect. Not all their tiniest of babies will be April Lawrences. And therein lies the difficulty.
Which babies live? And which babies die? And who decides?
With ever-tinier babies surviving, neonatal ethics is an emerging field, a discussion just beginning.
The issue came to the political and societal forefront in the early 1980s, with the so-called Baby Doe cases. One involved an infant in Indiana born with Down syndrome and a throat obstruction. His parents didn't want life-saving surgery performed. The doctors sued in the baby's behalf.
The other involved a baby born with severe brain and neurological problems, whose parents also refused surgery.
The cases came to the attention of the Reagan administration, which released the ``Baby Doe rules.'' They forbade nurseries from withholding food, water or medical treatment from infants. They created 1-800-BABYDOE hot lines to call when neglect was suspected, and organized ``Baby Doe'' squads - officials who roamed the nation's intensive-care nurseries looking for signs of neglect.
The Supreme Court struck down the Baby Doe rules in 1986. In the interim, Congress passed a law mandating aggressive intervention for almost all infants.
The irony of these attempts to legislate treatment, say medical experts, is that most such cases do not involve babies with highly unusual medical problems that are easily fixed with surgery.
Instead, it is extremely low-birthweight infants like April who pose more complicated, less-clear-cut dilemmas. In those cases, many times, the issue is not one of undertreatment, but of overtreatment.
Just ask the nurses. In a NICU like Children's Hospital's, it is the nurses - all of them highly trained RNs working 12-hour shifts - who know the babies best. Unlike the doctors, who sweep in and out during rounds or emergencies, the nurses, caring for just two babies at a time, are always there. They are the ones administering medication, pricking tiny heels, trying to find a hair-thin vein for an IV. They change diapers, give baths, rock and hold the babies when the parents are absent.
Attachment develops quickly.
They know, from the way a baby cries when it's in pain - or, more frighteningly, doesn't cry - to the way it sucks its hand, how that baby is doing.
The key word that governs their decisions in the NICU, the nurses say, is respect.
``You have to respect the parents, the family, and you have to respect the baby,'' said Jackie Goode, a nurse at the Children's Hospital NICU. Respect means anything from ensuring that the baby is held when it dies to saying ``I'm sorry'' when you insert an IV because you know it hurts.
``It's a living human being,'' Goode said, ``no matter if it's 300 grams or 30 pounds.''
At the same time, respect means understanding and adhering to the parents' decisions, even if you don't agree. It's often the most difficult part of their job, say the nurses, especially when a baby has a hopeless prognosis and is in pain.
One nurse, who asked not be named because she didn't want to upset the parents, described the agony she underwent while caring for a premature baby for six months. The baby, born about two months early, was extremely sick. Although it was clear she would eventually die, the parents could not bring themselves to stop medical treatment.
``And in the meantime, we're caring for the baby and it's breaking your heart every day, knowing that she's suffering. But there's no clear-cut answer.''
For the doctors, the issue starts earlier, when the baby is still in the womb.
Neonatologists often know in advance, from the obstetrician, that a very small baby is coming. This gives them time to prepare the parents, to explain what the baby's chances are, based on past experience. And to get a sense of what the parents themselves want.
Dr. Gary R. Gutcher, chairman of the department of pediatrics at the Medical College of Virginia, has tracked the outcomes of 5,000 babies admitted to his NICU since 1989. Based on weight and gestational age, he created a chart that helps him advise the parents.
He can tell them, for example, that he has had just one baby born at less than 24 weeks, weighing less than 600 grams, leave the NICU alive.
But all the charts and numbers in the world can't replace first-hand observation. Ultimately, Gutcher, like the doctors in Children's Hospital's NICU, makes no decision until he sees the baby.
That's because babies don't come with calendars tattooed to their chests. What was thought to be a 23-week-old may, in fact, be a 25-week-old, and those two weeks can make all the difference.
Even if parents tell him not to resuscitate the baby, Gutcher says, he would evaluate the baby himself and make a decision.
``Once that cord is cut,'' he said, ``my patient is the child, not them.''
Gutcher understands that mistakes will be made. ``Doing nothing, and then later in some miraculous way finding out this was the next Martin Luther King Jr., and we did nothing - that's a mistake you can't reverse.''
Or doing a great deal, at great emotional expense and pain to the parents, child and caregivers, and ending up with something that, ``if most of us were in the child's place, we would say `I don't want to be here.' ''
The outcome of such decisions can be expensive.
About 300,000 babies are treated each year in the neonatal intensive care units of about 600 U.S. hospitals. The average cost for pre-term babies with birth weights of 500 to 749 grams - slightly more than a pound to about a pound-and-a-half - is more than $140,000. That compares to the average cost of a normal newborn of about $3,200.
It is that cost, and the bleak outcomes and down-the-road expenses many of these babies face, that lead some to question the financial ethics of treating all extremely low-birthweight babies.
Fleischman, the ethicist, offers a defense of treating as many as possible. What's important, he said, is not that an April Lawrence costs more than $1 million to save, but that the level of care she received will help thousands of other babies. Having such a high-level of expertise available, he said, elevates the level of infant care throughout the region.
Doctors at Children's Hospital use the word justice, an important element in bioethics, to explain the issue.
``How right is it to expend a lot of resources on a very tiny baby who maybe doesn't have a huge chance of survival?'' asks neonatologist Jamil Khan. ``A lot of the issue is a societal question. In general, bringing that issue from the global down to the doctor/patient isn't such a good idea. Because it's not like the doctor is going to say, `Whoops, we can't do this procedure because someone else needs a heart bypass.' ''
It also depends where your priorities lie, said Children's Hospital neonatologist Edward H. Karotkin. ``If everyone gave up potato chips for one day, it would probably pay for the all the premature babies for a year. Or if we build one less rocket, or one less tank.''
Or if we put more money into prenatal care.
Studies show that for every dollar spent on prenatal care, more than three dollars are saved in the intensive care unit. But, Khan said, it's politically unpopular to provide such services - usually in the form of public-sponsored health care - to the poor and often unmarried women who need it.
``But babies are easier to agree about,'' he said, ``because they're cute little babies. They certainly had no role in getting themselves here.''
In the end, say Fleischman and the NICU doctors, the decision about letting the child live or die - unless it would be clearly acting against the child's best interests - should be left to the parents.
It is the parents who will take home a severely mentally or physically impaired child. It is they, not the doctors, who will spend the rest of their lives caring for it and paying for it.
``It's hard not to impose your opinions on the family,'' Karotkin said. ``I always find that very difficult, because what we might do might be different from what families would do.''
And the problem of withholding intensive care without parental agreement is just too morally fuzzy, he said, even though it probably would be legal.
``For us,'' Khan said, ``it's a medical judgment, but for them it's much more than that. It's giving up hope.''
Stephanie Gray hasn't given up. Her son, Seth, weighed just under a pound when he was born 17 weeks early in August. Today, he still occupies a corner incubator in Children's Hospital's NICU, a four-pounder with bruises on his bald head from needle sticks.
Seth's problems read like a medical tour of the NICU: pulmonary hemorrhage, perforated intestines, eye surgeries, a yeast infection throughout his blood system, a clot in his heart, unexplained fevers.
But Gray, a special-education teacher from Cape Hatteras, N.C., never thought to give up. She's not even sure it's a decision she could make.
She watched as the baby next to Seth died when his parents agreed to stop treatment. ``It was miserable to watch,'' she said. ``I don't know if I could have made that decision. I left it up to the doctors to make what they thought was in Seth's best interest.''
On the question of who should live and who should die, she errs on the side of life.
``I believe that God will make the decision, that regardless of what we choose to do medically, if (Seth's) not going to make it, he won't make it.''
But every child, she said, deserves a chance. ILLUSTRATION: BETH BERGMAN color photos/The Virginian-Pilot
A premature baby gets his heart checked at the neonatal intensive
care unit at The Children's Hospital of the King's Daughters in
Norfolk.
Mother Rebecca Leonard, left, and grandmother Sharon Ward comfort
premature newborn Jackson Leonard. The infant has a slight cold.
KEYWORDS: PREMATURE BABIES ETHICS