Saving New Life
Christy King went into labor the morning of Aug. 26. It was not a happy occasion.
Barely 23 weeks into her pregnancy with triplets, King and her husband, Rob, had been warned that challenging times lay ahead.
Each of their children would weigh in at just over a pound. The infants' skin, lungs, eyes and digestive and circulatory systems would be woefully unprepared for life outside the womb. The Kings, first-time parents, would not be able to touch their babies. Doctors and nurses would use extreme care handling them.
If the babies lived, each one would likely need multiple surgeries and other interventions, but even the most advanced care might not save them. Survivors could be blind, deaf, brain-damaged and afflicted with at least some neurological, physical and developmental problems.
Neonatologists at WakeMed asked the inevitable and painful question: Did the Kings want doctors to do everything possible to keep their triplets alive? Or would they prefer the infants receive no medical care and instead be allowed to pass on as their parents held them?
The question put the Kings, who live in North Raleigh, at the center of one of medicine's most emotionally charged and difficult ethical debates. How early is too early to try to save the youngest and most fragile premature infants, and how should decisions regarding their care be made?
A panel of British medical experts weighed in on the question in the fall, releasing a report that recommends withholding life-sustaining treatment from infants born at 22 weeks or earlier. A pregnancy is considered full-term at 38 weeks.
A Considerable Variation
The panel's recommendation might sound extreme, but it isn't controversial among neonatologists -- specialists trained to care for premature infants. Most agree that there is little point in resuscitating babies born at 22 weeks. Their tiny bodies are simply too immature to survive, even with state-of-the-art care.
But there is considerable variation in whether life support is provided to babies born just a week or so later, as the King triplets were. That's where the real ethical dilemmas lie.
These extreme cases make up just a small fraction of the roughly 500,000 infants born prematurely each year in the United States. In North Carolina, babies born before 24 weeks -- infants born at what neonatologists call the "border of viability" -- account for perhaps a few hundred of the approximately 16,000 premature babies born in the state each year.
However, medical care provided to these babies accounts for a disproportionate share of the more than $26 billion spent on premature infants annually in the United States. A 2003 study found that neonatal hospitalization costs for infants born earlier than 25 weeks averaged $202,000, though bills can be much higher. That's nearly 200 times the $1,100 spent on the same care for a healthy, full-term newborn, the study found.
Every Decision Different
Nationally, 30 percent of 23-week preemies, at best, survive with intensive care. Some hospitals, including WakeMed, typically provide these preemies with routine life support only, such as mechanical ventilation. Whether to provide more aggressive care -- or no life support at all -- often depends on the parents' wishes.
"There's no cookie-cutter approach," said Dr. Thomas Young, a senior neonatologist with WakeMed Faculty Physicians. "Every situation is a little bit different, and every decision is a little bit different."
Other neonatal programs, such as the one at Duke University Hospital in Durham, routinely start 23-week preemies on mechanical ventilators and cardiac support. Parents, with guidance from physicians, might decide later whether to withdraw such care if devastating complications occur.
"When survival is at stake, you can't really tell a parent that it's futile to resuscitate," said Dr. Michael Cotten, a Duke neonatologist. "I think we feel more comfortable being aggressive early so that later, if problems do arise, we can at least be sure we gave the kid a chance."
Christy and Rob King, who had a couple of days' warning before Christy went into full labor, agonized over their choice.
"As a mother, I was already in love with them," Christy King, 36, said of the two girls and boy she carried. "The selfish part of me wanted them . But as a mother, I did not want them to suffer just to make us feel better."
The Kings decided they wanted each triplet to be placed on a mechanical ventilator. But if there were clear signs the infants' bodies were failing, they would not seek further care. The couple saw no point in forcing their children to endure painful, invasive treatments that might extend their lives for a few days or weeks but would not ultimately change their final prognosis.
Roman Catholics, the Kings asked their priest to come to the hospital the day of Christy King's cesarean section. As his wife lay in recovery, Rob King stood with the triplets as the priest baptized each baby.
The chance of survival alone is not the only thing physicians and parents factor into decisions. The child's likely future quality of life, which no one can accurately predict, also looms large.
National follow-up studies of infants born at 23 or 24 weeks gestation show that roughly a third of these children are blind, deaf or living with cerebral palsy. A quarter are mentally retarded. Half have significant developmental problems.
Deciding a preemie's fate based on whether he or she might be disabled puts parents in the uncomfortable position of deciding what types of lives are worth living. Is the prospect of having a blind or deaf child, or one who is mentally retarded, enough reason to refuse life-sustaining care? What about profound brain damage that obliterates all ability to think, speak or move?
Most families, even those who might have experience making end-of-life decisions for elderly parents or relatives, are wholly unprepared, said Angela Holder, a professor of the practice of medical ethics at Duke University.
"If you're dealing with your 90-year-old grandmother, you know Grandma, you know what she liked and didn't like, and you can make end-of-life decisions based on that," Holder said. "This is a brand-new person who has never had any opinions about anything, and you have to decide whether they live or die."
In practice, neonatologists say, most parents put thoughts of future disability aside when deciding whether to continue care.
"Usually, if there is any hope of survival, parents want us to do all we can," said Cotten, the Duke neonatologist.
For extremely premature babies, most intensive care should be considered trial treatment that might not be effective, said Dr. Mia Doron, a neonatologist at UNC Hospital. Most of those who die in intensive care nurseries do so when treatment is withdrawn, after parents and physicians realize that treatment is not working and causing only pain and suffering, Doron said.
Sometimes nature helps families answer the impossible questions quickly.
'Tears for Us'
One of the Kings' girls, Natalie Rose, was in trouble within 12 hours of her birth. Close to midnight on the night of Aug. 26, the Kings learned their daughter's lungs were not working properly, even with help from the ventilator. The neonatologist on duty told them they would soon need to make a decision about ending support.
Then, an hour or two later, the same doctor came back into the hospital room with more bad news: The Kings' son, Robert Jr., was fading fast and was not expected to make it through the night.
A nurse appeared at the door with a wheelchair to take Christy King, followed by her husband, into the nursery. They stopped at Robert Jr.'s incubator. As the nurse gently disconnected the baby from his ventilator, Christy King asked that her husband be allowed to hold him first. Rob King held the small bundle for a while, then passed the baby to his mother.
Christy King gave the boy back to his father, who held the baby as he died. A nurse put Natalie Rose in her mother's arms. To Christy King, her face seemed no larger than a golf ball. Doctors and nurses stood around the couple in a circle, honoring the babies' passings.
"They were in tears for us," Christy King remembers.
When the babies were both gone, the Kings went to their remaining triplet's incubator. Christy King spoke to her daughter, Sophia Marie.
"I said to her, 'Little girl, this life has so much to offer. Mommy will never leave you. I will fight this with you,' King recalled.
It took 146 days in the hospital nursery and five major surgeries, but today Sophia at last lives at home with her parents. Bills for her hospitalization have reached about $800,000, most of which will be covered by the private insurance Christy King has through her work in sales for a major food distributor. Sophia breathes on her own and drinks from a bottle. She sleeps, cries and charms her parents. At seven pounds, she is now the size of a full-term newborn.
"We're really happy with where she is today," said Rob King, 32, a special-education teacher at Garner High School.
A Pretty Good Life
The Kings know there will be more challenges ahead, as Sophia grows and doctors get a better idea of what lingering issues her early arrival might have caused. The Kings already know that their daughter might have serious vision problems, which are common among preemies. With three eye surgeries already behind her, Sophia might be legally blind, doctors have warned.
But when Christy King thinks of her daughter's future struggles, she can't help but think with pride of what she has already overcome. She recalls that, in the beginning, doctors gave her a 15 percent chance of survival.
"I look at my little girl and, to me, she has the quality of life of any newborn," King said. "We are not here to convince people that they should save every baby. It's a personal decision, and everyone has to make it on their own. But if this is a 15 percent chance of life, it's pretty damn good."
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