Because of this, those of us who work in neonatal intensive care units (NICUs) often face an impossible decision: to provide intensive care to such babies when they are born or to step back and not intervene.
A birth and a debate
In this case, I had an ominous feeling. Under ideal circumstances, the obstetricians would use medications to try to stop preterm uterine contractions. This would give me, the neonatologist, time to talk to the woman in labor and her husband or partner and explain the risks, complications and treatment choices for a preterm baby. I would try to allay the anxiety and shock that almost all of them felt.
Because of the bleak prognosis for babies born at 23 weeks, I also would offer the parents the option of “comfort care only,” meaning we would only warm, dry and wrap the baby and let the parents hold her as long as she was alive. We would arrange for a baptism or any other religious or cultural ritual the parents desired. The baby usually passed away quickly.
In this case, the mother’s labor was well underway and we didn’t have time to discuss those options. “Okay, let’s set up; make sure everything is ready,” I said, initiating a process that I have honed over nearly 20 years of performing emergency resuscitations. “I’ll talk to the parents; let’s see what they say.”
Next door, in the delivery room, there was an atmosphere of controlled urgency. The obstetrician, a resident and nurses attended to the patient, who was very young, no older than 14. Standing next to her was a middle-aged woman, her mother.
I introduced myself and asked whether they had any questions. The girl’s mother shook her head, looking grim. As I walked out, the obstetrician followed me. “She says she didn’t know she was pregnant till this morning,” he said. The girl had gone to the doctor’s office for abdominal pain, discovered she was pregnant and in labor, and was then rushed here to deliver.
He added that “the ultrasound from the office this morning says she’s 23 weeks; we just repeated an ultrasound, and she could actually be more like 22. I told the family that you guys will look at the baby when it’s born and figure out if it’s viable or not.”
When is a baby viable
I dreaded this because there are no reliable medical criteria to tell for sure whether a baby is viable. Until a couple of decades ago, physicians commonly used criteria such as the newborn’s eyelids: If the baby’s eyelids were fused shut and couldn’t open on their own, doctors thought the baby wouldn’t make it. Research later showed that this test was flawed.
The best predictor is a precise estimate of the gestational age, calculated from the date of her last menstrual period, from an ultrasound early in the pregnancy (later ultrasounds are less reliable) or from in vitro fertilization. For this patient, we had no such accurate estimates.
Back in the resuscitation room, we set up equipment to provide artificial respiration to the baby and a medication to instill into the baby’s lungs through the windpipe to help them function.
A respiratory therapist arrived to hook up breathing equipment. With the whole team assembled, I explained that if the mother wasn’t sure of her dates, 23 weeks was just a guess. We could always withdraw life support after we initiated it, but it would be a catastrophic mistake to let a baby die on a mistaken assumption of her gestational age.
My team did not seem convinced. I knew they felt that they were being forced to do something that they did not agree with. They clearly felt we shouldn’t be resuscitating 23-weekers whose prospects were so grim. They knew my experience in a previous hospital had been with a patient population that was more educated and affluent. Patients at this hospital, the nurse practitioner said, “almost never agree to withdraw life support.” The NICU nurse agreed, both of them warning that if we resuscitated this baby, we were committed to treating it until the very end, whatever complex form that treatment might take.
At that moment the delivery nursed called in: “Baby’s coming!” Normally, watching a birth invokes a sense of wonder. To see a new life emerge, to hear his loud cries of protest, to see the vigorous kicking of his limbs and the dawning pink color of his skin as the oxygen floods his body — these moments fill me with a sense of awe, even after witnessing them time after time.
An extremely preterm baby is different. Most are born limp and silent. Their skin has an unhealthy dark color and is often covered with purple bruises from the delivery. They are so tiny and fragile-looking.
This baby emerged quickly, her body slick, covered with amniotic fluid and blood. We quickly moved the baby into the resuscitation room, where she was placed on a chest-high warm resuscitation bed.
She had thin, almost transparent skin, bruising over her trunk and immobile limbs. She looked very premature indeed — 22 weeks was definitely possible — and I thought somewhere around 450 grams, or the weight of a 16-ounce cup of soda. Generally, babies weighing less than 500 grams have a really bad prognosis. The outcome wasn’t looking favorable.
She needed oxygen. A mask was placed over the baby’s face to force air into her lungs, and a nurse reached out to feel the baby’s umbilical cord. “Heart rate less than 60,” she announced. “The chest’s not rising,” I observed. The nurse readjusted the position of the mask and tightened the seal. The baby’s chest rose with each surge of air, but she was otherwise immobile and blue. “Heart rate still less than 60,” the nurse said.
The obstetric resident walked into the room and peered at the tiny girl. “You know, the family does not want any heroic measures for the baby,” she said. “If the baby’s going to suffer, they’d rather let her go.”
We inserted a thin tube into the baby’s trachea to pump oxygen into her body. Her skin slowly began to get a little pink, and her heart rate increased.
The obstetrician came in. “Gosh, she does look like a 23-weeker, doesn’t she?” he said. “Are her eyelids fused?” As if on cue, the baby slowly opened her eyes, drew up her legs and stretched her arms. Her skin was turning a healthy shade of pink, and she was vigorously moving her limbs.
We performed a Ballard exam to estimate the baby’s gestational age, testing muscle tone, skin, ears and other physical signs of maturity. To our surprise, the exam estimated the baby’s gestation to be around 25 or 26 weeks. And she weighed 650 grams. My visual estimate had been wildly inaccurate. I was glad I had not used it, or any other immediate impression, to make a snap decision about whether to resuscitate.
I went to see the baby’s mother and grandmother and congratulated them and said the baby was stable. We would bring her to the mother soon and then transfer her to the NICU. The teenager, looking tired, did not reply and turned her face away from me. Her mother thanked me but did not smile.
A public health issue
Fifteen million premature babies are born each year worldwide; a million of them die. In the United States, prematurity contributes directly or indirectly to more than one-third of all deaths in infants less than a year old. The estimated cost of prematurity in the United States annually is $26 billion (in 2005 dollars), which includes not just intensive care at the hospital but also continuing care for long-term problems such as cerebral palsy, mental retardation, visual and hearing impairments, behavior and social-emotional concerns, learning difficulties, lung problems, and poor health and growth.
Why are so many babies premature? In some cases, babies are intentionally delivered early by doctors — for instance, if continuing the pregnancy poses a medical risk to a mother with uncontrolled high blood pressure. In our case, the cause was uncertain. Such spontaneous premature births, though, are more common among teenage mothers and among women who are poor, unmarried, have limited education and get inadequate prenatal care. The rates are twice as high in black women as white women. Maternal smoking, alcohol consumption, low maternal body mass index, age greater than 35 and a short interval between pregnancies are also associated with unplanned premature birth.
Thirty or 40 years ago, it was common to not resuscitate babies born at 28 or even 30 weeks. Over time, neonatal intensive care technology and knowledge improved, and intensive care is offered at increasingly lower gestational ages.
But with improved ability to save babies, the cutoff point became blurred. Today, premature babies around 25 weeks are routinely provided intensive care, but those at 22 or fewer weeks usually are not. Between those two are babies in the “gray zone.”
In an ideal world, decisions about the care of these borderline babies should follow the principles of shared decision-making based on in-depth, compassionate discussions between the parents and health professionals before the baby is born.
To help clinicians manage extremely preterm infants, the American Academy of Pediatrics issued a clinical consensus-based report in 2009. It recommends a comprehensive and consistent approach to preterm infants in each hospital, accurate prognostic data for parents and resuscitation decisions based on the probability of good outcomes with treatment.
In the real world, however, expectant parents frequently receive poor prenatal counseling and are not adequately involved in decision-making. Preterm labor usually develops unexpectedly, so patients are admitted emergently under time pressure, when they are sleep-deprived, medicated and anxious.
Meanwhile, multiple studies — including one I co-authored — have shown that health professionals are overly pessimistic about the outcomes of such infants, overestimating their mortality while underestimating the rates of survival without handicaps.
Neonatologists, obstetricians and others may decide whether to pursue resuscitation only after they have seen “how the baby looks” in the delivery room. Such practices are not supported by the evidence, but they are common.
The best approach to dealing with premature babies, though, is in preventing them and avoiding these tricky ethical situations in the first place. A March of Dimes campaign launched in 2003 to prevent prematurity is showing some results. Two governmental programs, Strong Start and Healthy Start, have been launched to improve pregnancy outcomes for women.
It is my hope that these kinds of programs will ultimately reduce premature births and the number of gray-zone babies born. As a result, neonatologists will face fewer snap decisions such as the one I faced in the delivery room that day, and babies, their families and society will benefit.
This story is excerpted from the Narrative Matters section of the journal Health Affairs.