Saving Baby Boy Green

Jessica Green was getting impatient. She was 19 weeks pregnant and waiting for her ultrasound images at Whitehorse General Hospital, but it was taking forever. She’d never had to wait this long before. Her fiancé, Kris Schneider, had already headed back to work for the day, and Green wanted to do the same. She told the receptionist that she would pick up the images later and headed out. It was late October in Whitehorse, the capital city of Canada’s northern Yukon Territory, and winter was beginning to set in.

The ultrasound technician caught up to her in the parking lot. Green couldn’t leave, the tech said. She needed to be admitted, right away. Green remembers responding with some sort of instinctive, mulish refusal: “I can’t.”

But she knew her pregnancy was considered high-risk: She was 37, she’d conceived via IVF, and she was carrying twins. She followed the tech inside and headed up to the maternity ward, where she learned that her cervix was shortening precipitously, a precursor to labor—it was already down to 1.1 centimeters, less than half of what it should have been. A baby’s lungs and guts take a long time to fully develop in the womb, and her tiny babies still lacked the abilities to breathe or digest food on their own. But the barrier between them and the outside world was fading away.

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Nik Mirus

Within a few days, a doctor performed an emergency cervical cerclage—effectively, he sewed her cervix shut—to protect the twins. That procedure came with serious risks: Both twins might die. But doing nothing might also mean losing them, so Green and Schneider had opted for action. After the surgery, Green gritted her teeth through a week of strict bed rest at home, but then pain and heavy bleeding chased her back to the hospital, where she was admitted and given morphine, fentanyl, and laughing gas while the staff waited to see if her labor would hold off. When she began to dilate again, the doctors removed the cerclage sutures before they could tear through her cervix. She and Schneider now lived in her hospital room. Contractions, irregular but powerful, came and went for days.

All hope of the twins reaching full term was gone. The couple simply hoped to reach what neonatologists call the threshold of viability: the point at which medical science has the ability to keep a premature baby alive outside the womb.

A full-term human baby can seem helpless at birth, but in comparison to a preemie that baby has an impressive toolkit of skills. Aside from their underdeveloped lungs and guts, babies born too early don’t yet have the reflexes or muscular control to suck and swallow simultaneously. They are prone to cranial hemorrhage, and sometimes a heart duct remains open. Their skin is thin and fragile; the veins glow eerily. They are sensitive to sound, to light, to touch. Their eyelids may still be fused shut, and the tiniest preemies may not yet even have the ability to close a fist around your finger—that essential early act, the moment when they take possession of you.

Over several decades, doctors and nurses have become better at grappling with all of these obstacles. The threshold still varies widely depending on a baby’s circumstances and on the care available immediately at birth. But advances in drugs, technology, and methods of care have pushed that line earlier and earlier, and today there are preemies growing up, healthy and whole, whose survival would have been unimaginable a generation ago. These days, the line between birth and death generally lies somewhere between 22 and 25 weeks’ gestation. Green and Schneider could only pray that they would get there.

Jessica and Kris take Owen for a hike through the woods behind their house.

Kamil Bialous

Whitehorse is a small city, home to roughly 25,000 people, that sits along the only highway to Alaska. Schneider works for the post office, and Green is self-employed as a massage therapist, acupuncturist, and osteopath­-in-training. The hospital where she lay bearing through jagged contractions was not equipped to deal with preemies younger than 35 weeks. So as they waited and hoped for her labor to subside, they made plans to get to Vancouver, to the neonatal intensive care unit where the very tiniest and sickest babies in British Columbia and Yukon wind up.

On November 10 one of the amniotic sacs began to leak—the one containing Baby A, who lay on the bottom of the uterus. (These were fraternal twins, so each had their own placenta and sac.) Green and Schneider were loaded onto a small plane and flown more than 1,000 miles south to Vancouver, and in the early hours of November 11, Green was admitted to BC Women’s Hospital. Viability was in sight. They were at roughly 22 weeks—and, after a hard conversation with their physicians, they had agreed that the doctors would attempt to resuscitate the twins if they made it to 23 weeks. The babies’ heartbeats were still strong. Green went to sleep; Schneider crashed out on the floor beside her.

A few hours later, Green woke up feeling that something was wrong. A nurse came in, took a look, and rushed her to labor and delivery. The umbilical cord attached to Twin A, the girl they’d named Maia, had slipped out of the uterus and into the birth canal. Maia had no heartbeat. Now doctors had to deliver her as fast as possible before her movement through the birth canal triggered labor in Baby B, the boy they called Owen.

This meant Green had to push, even though she knew Maia wouldn’t survive. She asked the doctors to put her under, to let it happen without her participation, but they couldn’t—a C-section would risk Baby B too. Do it for Owen, someone said to her.

Maia came out weighing just 12.3 ounces, minuscule and bruised. The nurses handed her to Green and she held the little body against her chest. “I think she’s still alive,” Green said. But Maia was gone. Hospital staff dressed her tiny body in tiny baby clothes, sewn by volunteers. They took her photo, took casts of her feet—collecting mementos that her parents might spurn now but want to have later. Green was anesthetized and her cervix was sewn shut once more.

For 12 more days she remained in the hospital, enduring regular inspections of her cervix by a pack of doctors who were watching for signs of infection. Every extra day in utero could give Owen a better chance at life, but if the amniotic sac became infected, it could take him. How soon should they induce? How long could they safely wait? It was another seemingly impossible life-or-death decision.

On November 22, at about 24 weeks gestation, Green spiked a fever. The next day Owen was delivered by emergency ­C-section. Schneider held Green’s shoulders while the delivery team worked on the other side of a raised curtain. They caught a glimpse of their tiny son, wrapped in plastic to trap his body heat, before he was wheeled away in an incubator. At 1.4 pounds, Baby Boy Green was admitted to the neonatal intensive care unit at BC Women’s Hospital. He had a 60 percent chance of survival. The NICU would be his home, and the center of Green and Schneider’s world, for nearly five months.

Neonatology is a relatively young field. The first incubators for babies were invented in the 19th century, adapted from poultry incubators to create a stable and warm environment intended to simulate the womb. These early incubators were cumbersome creations of glass and metal. To fund them, they were put on public display—with living preterm babies inside them—at exhibitions across Europe and North America. Incubator babies were regular attractions at Coney Island and occasionally on the Atlantic City boardwalk throughout the early decades of the 20th century. A total of 96 preterm babies in incubators were shown to visitors at the 1939–40 New York World’s Fair. (Eighty-six of them survived.)

By the 1960s and ’70s, neonatology had graduated from carnival sideshow to accepted medical discipline. But the basic nature of the NICU hadn’t changed that much from the Coney Island days: A typical nursery held rows of incubators, a tiny baby lying behind the plastic in each, with parents mere spectators of their day-to-day care.

Doctors’ abilities to keep preemies alive a half-century ago was limited. Patrick Bouvier Kennedy, the third child of John and Jacqueline Kennedy, was born five and a half weeks premature and died just 39 hours after his birth—today he would be considered only a moderate preterm baby, not in the danger zone at all. Several treatments, often working in combination, have driven that dramatic improvement. Among the most important are the invention, in the 1980s, of an artificial version of a natural lung lubricant that preemies initially fail to produce enough of on their own; antenatal steroids, widely adopted in the 1990s, to jump-start a likely preemie’s lung development even before birth; continual tweaking of the mechanical ventilator and the incubator, which is now far more complex, offering controlled levels of moisture and ambient oxygen in addition to providing heat; and the ability to deliver nutritional solutions intravenously to babies who can’t yet eat.

When Owen was born, neonatal units around North America were increasingly adopting a family-focused model of care: Parents of preemies and other infants receiving treatment in the NICU were encouraged to join on rounds with the medical staff, to touch and hold their babies more, to change diapers and help with feedings, and to be more involved in decisions—especially life-or-death ones. Ten or 15 years ago, many hospitals had firm rules: They would not agree to resuscitate babies born at or before 23 weeks, say, and they would not recommend the practice before 25 weeks. Now the American College of Obstetricians and Gynecologists recommends that physicians, with the parents’ input, at least begin to consider resuscitation as an option at 22 weeks.

Back when Green and Schneider were waiting in Whitehorse, they’d had a tough conversation by phone with Sandesh Shivananda, a senior neonatologist and the medical director of the NICU at BC Women’s. He’d told them that, at 22 weeks, the twins would have less than a 5 percent chance of survival. At 23 weeks, they would have a better chance at life, but high odds of living with severe neurological complications. Even at 24 weeks, they would likely spend several months in intensive care. He’d talked to them about the difference between “active care”—working to save a preemie’s life, and “compassionate” care—easing its way from birth into death. Discussions around extreme preterm births—generally defined as 28 weeks or earlier—are similar to the ones around end-of-life care: What kinds of extraordinary measures will we deploy? For how long? To what end—saving a life, or just prolonging it?

The policy at BC Women’s is to lay out the potential outcomes for parents and to work with them to form a plan, aiming for realism without being overly discouraging. It’s a delicate dance, and Shivananda’s goal is to give parents as much information and as much control as possible: to give them some ownership, some sliver of power, over their nightmare.

Kris Schneider at home with Owen in Whitehorse, Canada, 14 months after the baby was born.
Kamil Bialous

The N.I.C.U. is both paradise and inferno. It’s a place of modern miracles, where babies whose lungs are too small to draw breath are made to breathe, their tissues forcibly inflated and deflated by tubes connected to machines; where parents burn quietly while they watch each new heartbeat register on the glowing screen above their baby’s incubator, unable to look away, in a slow immolation that can last for days or weeks or months.

“Off the bat,” Schneider says, “they tell you, ‘He’s going to be a champion for two or three days,’ and then he falls off a cliff.”

“And then,” Green says, “you fall off a cliff.”

Owen was immediately diagnosed with extreme prematurity and respiratory distress. He was also vulnerable to sepsis. In other words: He couldn’t breathe and was at risk of a severe infection. He was intubated in the delivery room, and his issues piled up from there. In the first week of his life, he was given drugs to help a valve in his heart close properly, and more drugs for his blood pressure. When he was a few days old, he had what appeared to be a seizure—more drugs. His kidneys were too small and new to function fully—more drugs. He received antibiotics for the possible infection he was born with, and then more for a suspected case of pneumonia, thought to be caused by his ventilator. He had a breathing tube down his throat for 45 days and a feeding tube threaded through his nose for four months. He received a steady supply of morphine to numb the pain of the treatments keeping him alive.

If someone so much as spoke too loudly near his incubator, his oxygen levels could drop, setting off alarms from the monitors. He received seven blood transfusions in his first two months. “It was just so tenuous,” Schneider says. Green wondered, in those early days, if they had made the right decision for their son. It was an agonizing 22 days before they were allowed to hold him.

When another baby was having a bad day, its monitors beeping out constant alarms as it struggled to grow and live, the couple felt relief that today was not their bad day—and the awful certainty that their turn would come soon enough.

The couple moved into Ronald McDonald House, a charity-run residence on the hospital campus reserved for out-of-towners whose children faced life-threatening illnesses. Schneider took leave from his job; Green canceled months of scheduled appointments with her clients. Back home, friends took in their two dogs and raised more than $12,000 to help them make up their lost income. Green was as sleep-deprived as the mother of any other newborn: waking up repeatedly in the night to pump her milk and freeze it for when Owen was strong enough to digest it. She spent her days sitting beside his incubator, reading children’s books to him in a whisper, refusing to allow herself to dwell on anything except his survival. “I remember walking into the NICU and making a choice—my feelings of anger, my feelings of grief, I really tried to keep them out of the NICU because he was so sensitive,” she says. “I swear to God that he could sense the energy you brought in.”

The nursery was kept as quiet as possible, but Green and Schneider were uncomfortably, intimately aware of the other parents hovering over other incubators nearby. Their feelings about those other parents were complicated. They’ve formed lasting connections with some, but in the NICU, envy and sadness and anger mingled with their solidarity. When another parent’s baby was having a bad day, its monitors beeping out constant alarms as it struggled to grow and live, Green and Schneider felt relief that today was not their bad day—and the awful certainty that their turn would come soon enough. On one of the first days, Green glimpsed twins in side-by-side incubators, and suddenly anger and jealousy—and the pain of her loss—shot through her. One day in late January, a new mom arrived with a daughter, Bronwyn, born at 28 weeks. To Green, the baby seemed so much more stable than Owen. But after nearly 200 days of treatment in the NICU, Bronwyn died.

Technology is essential to neonatology, but there’s a critical human side to the science of saving preemies too. In the late 1970s, something happened in Bogotá, Colombia, that would begin to bridge the divide between the incubator babies and their parents. A lack of equipment and concern about the risk of hospital infection led doctors at San Juan de Dios Hospital to send stable preemies home with their mothers instead of incubating them. The doctors instructed the mothers to hold the babies continuously, bare skin on bare skin, vertically against their chests, and to feed them only breast milk whenever possible. When mothers started doing this, the area’s low survival rates for larger preterm babies tripled. The close contact seemed, in some ways, to replicate the womb better than an incubator—at least one in an underfunded hospital. This practice is now well known as kangaroo mother care and was written up in the Lancet in 1985. The paper’s authors didn’t endorse the home-care option for babies with access to modern NICUs. “Nevertheless,” they wrote, preemies in a hospital setting “could benefit from similar emphasis on education and motivation of mothers and early skin-to-skin contact.”

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Three decades later, while Green and Schneider adapted to life in the open NICU, an experiment built in part on the Bogotá breakthrough was unfolding in two rooms down the hall. For the first time in North America, some new mothers could receive their postpartum care in the same private room where their infants received their neonatal care. The same nurse who checked a baby’s oxygen levels and drew blood from his tiny arteries would also be checking his mother’s cesarean incision site or monitoring her for excessive bleeding.

The program was part of a reimagining of the entire NICU at BC Women’s. Around 2010, hospital administrators had invited past patients to consult on the design for a new building. They gave the former patients a cardboard model of the hospital and a handful of Lego figures. One woman kept moving the mother Lego character next to the baby. Why, she asked, couldn’t she just get her care with her baby nearby? The answer was rote and unsatisfying. It’s just not done that way. Postpartum is postpartum, and the NICU is the NICU.

But the idea of private rooms where parents could spend more time with their babies had been on the administrators’ minds. “Mothers tell us, and it’s in the literature, that the most stressful event of having a baby in the NICU is being separated from baby,” says Julie de Salaberry, the director of neonatal programs at the hospital. This was about more than just alleviating parental distress too. One research paper, from Sweden in 2010, found that private NICU rooms reduced babies’ hospital stays by an average of five days. In fact, plenty of medical literature now shows that restoring parent-child connections helps improve the lives of the tiniest preemies as surely as the drugs and the tubes and the machines do.

BC Women’s opened the doors of its new building in late October last year. The new NICU, made up entirely of private rooms (including a dozen built for integrated mom-and-baby care), is intended to safely facilitate breastfeeding and skin-to-skin contact, the most basic human interactions that were once off-limits to sick babies.

Jessica Green and Owen, who so far has met every developmental benchmark for his corrected age.

Kamil Bialous

Even though Owen was at B.C. Women’s before the new building opened, skin-to-skin contact was a part of his life as soon as he was stable enough. In between the rounds of drugs and tests, he’d spend hours curled up on Green’s or Schneider’s bare chest, listening to their heartbeats and their breaths, so much stronger than his own. After about two months, Green and Schneider began to believe that he would make it. Finally on April 7, 2017, after four and a half months of blood tests, of tubes and wires, of constant monitoring of his oxygen levels, Baby Boy Green was discharged. Schneider had flown back to the Yukon a week earlier to get their small townhouse ready; he retrieved the dogs from their long stay with friends; he set up a bassinet in his and Green’s bedroom. He met Green at the airport—his initial amazement of how other people were living their lives free of the hypervigilance and fear of the NICU finally subsiding. Owen slept the whole way home.

Owen is now 16 months old, and happy almost all the time, smiling and content to roll around on the townhouse floor. He’s pale, blond, and blue-eyed; he makes eye contact and grins at strangers. He can breathe on his own now, but his lungs are fragile; a chest cold could put him back in the hospital. For months after they brought him home, Green and Schneider kept a sign fixed to his carrier that read: “I’m a Preemie! NO TOUCHING! Your germs are too big for me!” They keep hand sanitizer with them at all times, and bottles of it sit on tables and shelves around the house. Early on, they wiped down everything they brought into their home that Owen would come in contact with—bottles, toys, new furniture—with disinfectant. On Christmas Eve, they called ahead to check if anyone at their intended dinner party had a cold; some of Green’s clients will cancel, penalty-free, if they feel a bug setting in. “You want to be normal,” Green says of their protocols, but you have to resist the urge to let things slide.

The literature now shows that restoring parent-child connections helps improve the lives of the tiniest preemies as surely as the drugs and the tubes and the machines do.

So far, Owen has met every developmental benchmark for his corrected age—he’s within the expected height and weight, and has the motor skills you would expect in a baby who was born on his mid-March due date, instead of late in the previous November. His only limitation so far is his unwillingness to swallow solid foods—possibly an aversion from the weeks he spent with a tube forced down his throat. Eventually he’s expected to catch up to his chronological age, but a medical team will be monitoring his neurological and motor development (among other things) until he’s 4 and a half years old, to see if any hidden legacies of his early birth and his time in the NICU emerge.

In November, Green and Schneider marked the first anniversary of Maia’s birth and death—and then, less than two weeks later, they celebrated Owen’s first birthday with friends at a snow-covered cabin outside town. It will always be that way: Every milestone for Owen will be paired, for his parents, with a reminder of what they’ve lost. But Green strives to appreciate her daughter’s short life. She likes to think about what Maia might have experienced or perceived in utero. She would have heard her parents arguing, Green figures. She would have heard the family’s dogs barking. She would have heard laughter. She also wants to find the right way for her son to know that he had a sister, and that they were born on opposite sides of a flexible, shifting line that we are gradually pushing back but whose exact location we might never be able to pin down.

In the old NICU at BC Women’s, there was a bulletin board with notes and pictures from parents who’d already done their time. Green saw one from a mother who promised the current crop of parents that the fear and anxiety of the NICU would fade with months and years. “I thought, there’s no way,” she says. “How am I ever going to relax again?”

But it turned out to be true. She has begun to forget the language of hemoglobin and oxygen desaturation and outcomes and odds. She’s forgetting what it felt like to be afraid all the time. She’s forgetting the sound of the monitors beeping, the alarms going off, the glow of the screen as it announces each new heartbeat.

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Eva Holland (@evaholland) is a freelance writer based in Canada’s Yukon Territory.

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