A hospital’s neonatal intensive care unit is the triumph of modern medicine’s investment in technology, pharmacy and know-how, says Dr. Rahul K. Parikh, a pediatrician in Walnut Creek, Calif. Dr. Parikh wrote an essay published in a recent edition of the New York Times.
Dr. Parikh points out that babies born somewhere between 23 and 26 weeks of gestation, or what’s called the limit of viability, are placed in the NICU. In the 1960s, when the first NICUs opened, premature infants had a 95 percent chance of dying. Today, they have a 95 percent chance of survival.
Now we face a difficult choice, Dr. Parikh says, one not unlike that facing physicians who take care of adults near the end of their life: whom to fight for and whom to let go. The decision says volumes about how we have come to regard the tiniest, frailest of patients.
Saving lives this young is not benign. Survivors of extreme prematurity have frequent, and often severe, complications during their time in the NICU. In the worst cases, these children will suffer lifelong disabilities: cerebral palsy; severe visual impairment that thick glasses and eye surgery can only partly correct; scarred lungs that will leave them reliant on oxygen tanks; intellectual and behavioral problems that put them well behind their peers.
Partly because prospects for these children can be so dark, the American Academy of Pediatrics suggests not resuscitating babies born before 23 weeks, while babies born after 26 weeks are usually resuscitated.
Between 23 and 26 weeks, the risks remain high but survival improves with each week. This range is treated by the pediatrics organization as a gray zone, and doctors and parents must make the hard decision about whether to try to resuscitate a baby without firm guidance.
The circumstances are rarely ideal. Neonatologists walk into a patient’s room, day or night, amid the intense activity of obstetricians and nurses trying to manage labor. It’s an emotional, tense and uncertain time not conducive to detailed discussion or reflection. Unsurprisingly, then, these life-or-death decisions are made inconsistently.
In a 2005 study, researchers at McGill University in Montreal surveyed 165 pediatric and obstetric residents in four Quebec medical centers about resuscitating babies born between 23 and 26 weeks. Some residents, the researchers found, worked at hospitals with an aggressive culture of resuscitation. Other facilities embraced far less aggressive approaches: Even at 26 weeks, when a premature baby’s chance of survival is over 70 percent, residents at these medical centers indicated that they would attempt resuscitation only about half the time. Pediatricians in the United States also have highly variable approaches to resuscitating premature babies, studies suggest.
Parents hold to a far more consistent ethos. A 2001 study by researchers at McMaster University in Ontario showed that a significant majority believed that attempts should be made to save all infants, irrespective of condition or weight at birth. Just 6 percent of health professionals said the same.
Why this gap between parents and some doctors, even as medical technology makes it possible to save increasing numbers of premature babies? Perhaps doctors who are reluctant to intervene at all costs are all too familiar with — and wary of — the possible consequences. As two neonatologists, Dr. William Meadow and Dr. John Lantos, put it , “It used to be that all of cerebral palsy was God’s fault.” Now roughly half of cases are our fault, they wrote, and “that is hard to live with.”
And many doctors realize the ordeal of resuscitation won’t be limited to the babies. The NICU is also incredibly difficult for parents. In 2005, Dr. Annie Janvier, a neonatologist in Montreal who researches decision-making in medically uncertain circumstances, was just over 23 weeks pregnant when she went into labor. She gave birth in the very hospital where she practiced neonatology.
They asked the team to take full measures. Their little girl, whom they named Violette, went right to the NICU. She would have a very rocky course, at one point becoming so sick that Dr. Janvier and her husband decided to withhold therapy. The little girl rallied, then nearly succumbed to an infection.
All of this had a deep impact on Dr. Janvier — but not the sort you’d expect. “I loathed visiting the neonatal intensive care unit while she was unstable,” Dr. Janvier wrote in an essay about Violette’s first weeks. “I hated being encouraged to participate in her care.”
Not bonding too strongly with a premature or sickly newborn may be a protective mechanism for parents, Dr. Janvier now believes. After all, for most of human history, premature babies died. But bring in modern medicine, set the expectation that every baby has a fighting chance, and we’ve authored a new relationship with these children — patients now, not objects — that we’re still struggling to confront.
Doctors may take the same approach. As a resident, the occupants of those little incubators, it seemed to me, were more fetus than baby, one interchangeable with the next. We didn’t even give them names, just a medical record number, or we would refer to them by their gender — “Jones, Baby Girl.” It was easier to round when their parents weren’t there. You could just get the night’s numbers, do a quick exam and move on. It all helped me stay detached.
Many studies show a vast majority of extreme preemies go on to live satisfying and productive lives. Violette left the NICU when she was 4 months old, and today she is a happy, healthy girl. Still, when the end of life is so close to its beginning, there are no easy days in neonatology. Doctors do the best they can under tremendous pressure and the specter of emotional and clinical uncertainty. It’s a reminder that despite the fact that we have the best technology powering the NICU, medicine remains a fundamentally human — and therefore imperfect — endeavor.
Kreisman Law Offices has been handling Illinois birth injury lawsuits for over 36 years, serving those areas in and around Chicago and Cook County, including Darien, Elmhurst, West Chicago, and Hoffman Estates.
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