Borderline Babies

This article was originally published in Chatelaine in April 1996. It is referenced in the journalism feature writing textbook The Bigger Picture.

This isn’t happening. This isn’t happening. This isn’t happening. The thought loops through Loretta Fearman’s mind as she lies in her hospital bed, hooked to three fetal monitors and looking out the window of the Royal Victoria Hospital in Barrie, Ont.

Loretta is 23 weeks pregnant with triplets. And she is bleeding.

No. No. No. The denial holds her fear in check. It’s nothing, it’s going to stop. Just like the last time.

Two weeks ago, Loretta was admitted to RVH with vaginal bleeding. She was released after eight days and sent home on bed rest. Loretta and her husband, Michael, thought they’d made it past the crisis. They hoped that the worst they’d be faced with was arranging a sitter to look after their 15 – month – old son, Adrian, while Loretta stayed flat on her back trying to make it to 30 weeks — the magic number.

With triplets, the Fearmans knew prematurity was almost guaranteed. But just how premature has become the agonizing question faced by parents and medical staff alike. Only two out of 10 babies born at 23 weeks will survive. And only about half of those survivors will be free of a major handicap: brain damage is not uncommon, and as many as 25 percent of survivors will develop the neuromuscular disease cerebral palsy by age 2. Vision and hearing problems are common, as well as a higher than average rate of learning disabilities. The risk of handicap declines with each successive week, until at 30 weeks preemies and full – term babies have an almost equal chance of “intact survival.”

But Loretta Fearman is still seven weeks shy of that safety zone. Her contractions have started, and there’s no going back. It’s a labor that is “100 times worse than with Adrian, because there was no happiness to carry us through it,” she’ll say later. Both Loretta and Michael are certain their babies won’t make it if they’re born this early. It’s a conclusion that numbs them with grief. They’re so focused on the black – and – white of life and death, they don’t even consider the gray zone: life at a price. Everyone in the hospital seems to beavoiding them, like “there’s an aura of sadness around us, and they don’t want to touch it,” Michael says later.

At one point, Loretta asks a nurse why they’re making her deliver naturally — why can’t they just knock her out and get it over with? The nurse tells her that if she’s going to abort these babies, it’s better for her to do it naturally. To Loretta, the nurse’s words hammer home the message: my babies are dying.

By 5:30 a.m. on Monday, July 11, Loretta is in the final stages of labor, and the call goes out to her obstetrician, Dr. David Johns. He instructs the nursing staff to alert the pediatrician on call, as well as additional delivery – room nurses and respiratory technicians. “Even in the worst situation, you go in hoping to save them all,” he says.

Just before 6 a.m., Loretta, with Michael at her side, is wheeled into the crowded delivery room. Looking around, she suddenly feels a spark of hope — with this many people here, maybe there is a chance the babies will survive. Michael just tries to shut it all out and stay focused on Loretta’s face. At 6:18, the first baby announces her arrival with a cry that under other circumstances should have prompted smiles. But to Michael, who has given up all hope for his babies, it seems like a cruel joke. (“I didn’t want to hear them or see them,” Michael says later. “I thought they weren’t going to make it, and I just wanted it to be over, and for Loretta to be okay.”) Leah weighs only 608 grams, just over a pound. Nineteen minutes after the first birth, the second baby, Isabelle, is delivered stillborn. Her tiny body, weighing less than 600 grams, is laid aside as the medical team focuses on Leah and Loretta.

Finally, nine minutes after that, the third baby — born breech, as the first had been — arrives. Dana weighs in at 18 grams over her surviving older sister: 626. But while she may be slightly ahead in weight, the last triplet simply doesn’t look as well as her sister. She’s bruised from head to toe, proof of her fragile condition.

Both babies are so immature that their tiny eyelids are still fused together. But breathing is the first priority. The delivery – room teams struggle to get a tiny airway, only 2.5 millimetres in diameter, threaded down each baby’s throat to sit at the top of lungs not much bigger than the top joint of an adult thumb. Leah’s lungs respond well. But Dana’s remain stiff, and doctors apply surfactant, a lung lubricant, to ease her breathing. Then, the babies are bundled into incubators and rushed down the hall to the neonatal intensive care unit (NICU). At full speed, it’s a 20 – to 30 – second journey.

Loretta and Michael are left behind in the delivery room, Loretta on the delivery table, numb with exhaustion and hopelessness, Michael standing next to her, still holding her hand. This isn’t happening. This isn’t happening. This isn’t happening.

***

Only a generation ago, extreme prematurity — births earlier than 32 of the average 40 weeks of pregnancy — was typically a death sentence. While incubators could keep a baby warm and supplied with high levels of oxygen, more often than not, the babies simply didn’t make it. Then came the mechanical ventilator in the early 1960s, and with its use, saving 30 – to 32 weekers became a matter of course. Refinements in ventilator technology and advances in intravenous nutrition pushed the barrier back even more, and by the 1980s, babies born between 28 and 31 weeks had a better than eight – in 10 chance of survival. Then, by 1989, came a major advance. In extremely premature babies, the lungs are stiff and easily ruptured, like a balloon that has never been blown up. But researchers developed a lubricant called surfactant that reduced the stiffness. The survival barrier moved back to 23 weeks, but not without raising new ethical questions.

A 1993 Toronto study that looked at premature births at three of the city’s hospitals over a five – and – a – half – year period paints a stark picture: of 330,000 live births, 568 infants were born between 23 and 26 weeks’ gestation. Of those premature infants, only one child born at 23 weeks and three at 24 weeks were free of a major handicap by age 2. All required months in a neonatal intensive care unit. And while the babies studied were born before surfactant was widely used, the authors still concluded that “an aggressive approach before 24 completed weeks’ gestation is not warranted.” But the technology exists. And the number of very early – stage preemies keeps growing.

***

In the neonatal intensive care unit at Barrie’s Royal Victoria Hospital, the teams work against the backdrop of pink and blue walls, stuffed teddy bears and softly drawn pastel angels decorating walls and shelves. IVs are inserted into each of the two Fearman babies’ umbilical arteries and umbilical veins, not because other vessels are hard to find — the babies’ skin is so translucent that veins are clearly visible — but because their bodies are so small that these two major vessels are the only ones large enough to allow the quick insertion of an IV catheter. Blood samples are drawn and analyzed for blood gases, to see how well their lungs are exchanging oxygen and carbon dioxide. Intravenous glucose is fed into their veins glucose is fed into their veins to maintain adequate blood sugar levels and replace fluids.

Dana and Leah also receive two rounds of intravenous antibiotics. Babies develop most of their immune systems during the third trimester of pregnancy, when antibodies are transferred from mother to child. But these infants are so immature that their own immune systems barely function. By now, there are almost more tubes and wires visible than baby. The open isolettes, heated by an overhead unit, are surrounded by high – tech digital readout monitors and computerized IVs. There are low – tech touches too: in an effort to stabilize their temperatures, both babies have been snuggled against latex gloves filled with warm water. The gloves are almost as big as they are.

Back in the delivery room, Michael calls his parents from the phone next to Loretta’s bed, to let them know what’s happened. His mother answers and he starts to explain, but the words get swallowed by his tears. Loretta strokes his arms and takes the phone from him — she’s numb enough to speak without crying. Then, they phone her parents.

It is 8 a.m., and against the odds, the two tiny babies have made it through their first 90 minutes. But to survive they’ll need to be moved to a Level 3 nursery, with long – term one – on – one nursing and around – the – clock intensive care. For the medical team, there is no ethical dilemma. There’s a chance these babies can be saved. The Fearmans are not consulted. The call goes out to Toronto’s Hospital for Sick Children, and an air ambulance is dispatched from Toronto Island Airport on the 20 – minute flight to Barrie.

It will be another two hours before the transport nurses feel Leah and Dana can be moved. Leah, the eldest, has stabilized well. But Dana is still having problems. Her temperature bobs up and down, and even with the heated incubator and latex – glove hot – water bottles, she never makes it over 36C. She needs 100 percent oxygen to keep her blood gases even near normal, while Leah is at 21 percent — normal room air. And it is taking far more ventilator pressure to push that oxygen in and out of Dana’s still – stiff lungs. The team faces the choice of spending more time trying to stabilize Dana, or of moving both babies right away. They decide that Dana is as stable as she is likely to get. It’s time to transport.

Michael wheels Loretta down the hallway to say good – bye. They’ll have to follow by car; there’s no room for parents in the helicopter. It is the first time they have seen their girls up close: earlier, Michael watched briefly from the nursery doorway as the team worked to stabilize them, but there were so many people in the room, he couldn’t get close to them. Now, Dana and Leah are tucked into the same transport incubator. It’s equipped with high – tech life – support and monitoring equipment. Again, there is low – tech help too — Dana’s and Leah’s tiny heads are warmed with knitted hats, their feet in tiny booties. Both babies wrap a tiny pink hand around Loretta’s finger as she and Michael kiss them good – bye.

And then they are gone.

***

For the detached and statistically minded authors of the Toronto preemie study, “an aggressive approach” to saving Dana and Leah is not warranted. But “babies aren’t statistics,” says Dr. Barry Smith, director of neonatology at the Hospital for Sick Children. If an infant is struggling to survive, “you have to err on the side of life,” he says. And you keep on erring on the side of life until the baby dies or the parents and doctors agree that the infant’s prognosis — short – or long – term — is so grim that death is a kinder option.

How do you know when you’ve reached that point? Often, you don’t. “One gets caught on a one – way train,” says Dr. Muniini Mulera, neonatologist and head of pediatrics at RVH. Dr. Mulera’s words are precise but laced with compassion. “You have already come this far, there is a parental bond with Baby, and because you can’t predict the future, you keep going because you hope that this is one baby that will be all right.” But more often than not, the baby is not all right. And then both physician and family are faced with deciding whether it is time to stop the train.

It’s a decision that rarely gets made the way you see it on television dramas like ER or Chicago Hope, with time for discussion and high – toned conflict. In real life, more often than not, you don’t know what questions to ask. Fear overtakes feistiness. Decisions get made by default. And the moral of the story depends largely on your viewpoint.

And it matters that most medical dramas are American. Why? Because outside of direct experience, our Canadian views of high – tech baby -saving are shaped more by American dramas than any other single source. In the United States, step – by – step consultation with parents of preemies and high – tech interventions are far more likely than in Canada. For one thing, you or your insurance company are footing the bill. Also, you’re more likely to sue if something goes wrong. But a major factor is an early 1980s court case commonly referred to as the Baby Doe case. The U.S. courts ruled that hospitals discriminated against people with disabilities by even considering quality of life as a factor in treatment decisions regarding premature babies. The ruling led to a period of pulling out all the technological stops to save a baby, regardless of the long – term prognosis or even the parents’ wishes. And while the Baby Doe decision was eventually reversed, some hospitals still opt for the life – at – any – cost route.

Here in Canada, Dr. Smith maintains, hospitals are much less likely to let technology drive the decision – making process. Parents need to be making the decisions, he says, because long after the medical team has forgotten the family’s name, the parents will be living with the consequences of their decision. “They bear the burden of caring for a severely handicapped child,” says Dr. Smith, “and if the decision is made not to treat, it’s also the parents who are likely to carry the greatest guilt over fearing that the decision was wrong.” But he admits that circumstances sometimes derail the consultative process, and that even under ideal circumstances, many parents still defer to medical staff.

***

After the helicopter leaves with Leah and Dana, Michael wheels Loretta back to the delivery room, where a nurse has bathed and swaddled Isabelle, the tiniest of the triplets, the one who didn’t make it. Loretta cradles the nearly weightless bundle in her arms, saying good – bye, as Michael wraps his arm around her shoulders. And then the tears come, this time from both of them. Michael has been up for over 36 hours and is in no shape to make the drive to Toronto. Loretta will be in the hospital for at least another night. There is nothing they can do until the next morning.

It’s just after noon when the babies arrive in Toronto. At Sick Kids’ hospital, Dr. Smith is on call when the Fearman babies arrive. Leah, stable at transport, is still doing well. But Dana’s fragile condition worries him. Her temperature continues to drop despite every effort to support it. She’s acidotic — her tissues aren’t getting enough oxygen from her lungs. Dr. Smith makes the decision to call the Fearmans: he needs their permission to remove her from the respirator.

Loretta is alone when the call comes in; Michael has just gone home to check on Adrian and to make arrangements for a funeral home to pick up Isabelle’s body. Dr. Smith explains the situation and reassures Loretta that Dana won’t be in pain, won’t die alone. It’s a decision no parent should have to make, but Loretta does. She hangs up the phone, draws a long breath, and calls Michael at home. In Toronto, Dana is given a painkiller by IV and removed from the respirator. One of the nurses quietly cradles and rocks her until she is gone.

Tuesday morning, Loretta and Michael arrive at the Hospital for Sick Children, with its soaring atrium entrance decorated with balloons and mobiles. They held hands for much of the hour – and – a – quarter drive, discussing the funeral arrangements for Isabelle and Dana, and worrying about Leah.

On the third floor, the Fearmans stand outside the softly lit visitors room waiting to be paged into the restricted – access NICU. On the wall outside the room, pictures of the unit’s success stories — children now toddlers or school – age — fill a display case, but on this first visit, the Fearmans are too preoccupied to notice.

A nurse comes to get them. Leah is in a ward with half a dozen or so other infants, some premature, others full – term but very sick. She’s in a closed incubator surrounded by monitors and IVs. The nurse updates them on her condition, and they’re given information about the hospital, the NICU and its routines. Neither is able to take much of it in.

Leah’s alive, but it’s still touch and go. For the next hour, her parents sit side by side on low chairs at eye level with the incubator. Michael is convinced that Leah will be okay. He’s not sure why he thinks so, and it’s not like him to discount even the possibility of a bad outcome. But he does. He hugs Loretta as she starts to cry. She wants to believe Leah will do well too, and she clings to that hope. She has already lost two babies in 24 hours; no God could be that cruel, she thinks, to take their third.

The rest of the week is a blur. Every day, the Fearmans travel back and forth from Barrie to Toronto. A neighbor pitches in to look after Adrian. There are funeral arrangements for Dana and Isabelle to be made.

Finally, on Friday, they meet with Dr. Smith. He tells them that Leah has made it through the most critical time, and that her chances of surviving are now about 50/50. Which side of 50, they ask. “I wouldn’t discourage you from buying her an RESP,” he replies.

But four months will pass before Leah is ready to go home. Like many premature babies, she develops apnea and bradycardia — her body forgets to breathe, and her heart rate dips dangerously, setting off alarms on the monitors. Gradually, the episodes become less frequent and finally end altogether. Leah also has a heart murmur. In premature babies a tiny vessel in the heart, which normally closes at birth, stays open. Sometimes surgery is required; Leah’s eventually closes without it. There are concerns about her eyes, too; in some cases, the high levels of oxygen used to keep preemies alive leads to blindness. The ophthalmologist considers eye surgery, then decides it’s not necessary.

And there are happier milestones too. On August 23, Loretta gets to hold Leah for the first time. Her little girl is 43 days old, and weighs 810 grams. Three weeks later, another major advance: Leah joins the “Kilo Club” by pushing past 1,000 grams, and comes off the ventilator. Finally, on November 18, Leah Fearman comes home.

One year later, Leah’s biggest health problem appears to be astigmatism in both her eyes, “but we can deal with glasses,” says Michael. She’s small for her age — only 14 pounds — but she’s lightning fast when she crawls to keep up with her older brother, and she burbles and laughs playing peekaboo with Mom and Dad. She doesn’t like you to hold her hands or touch her feet, though. Loretta thinks it’s because they were frequent targets for IVs and blood samples.

Like most premature babies, Leah has chronic lung disease, the result of scarring caused by the high levels of oxygen and respirator pressure required to save her life. But as her lungs grow, new tissue will develop and the scarring will disappear. The learning disabilities that often plague premature children, if there, likely won’t show up until she’s in school. “We’ll just have to deal with things as they come,” says Michael. Although she shows no early signs of cerebral palsy, it’s still too early to tell for certain that she’s beaten the odds on the disorder. However, a severe form would have occurred by now, says Dr. Smith.

For 23 – weekers, Leah is the exception, not the rule. Dr. Mulera points to a recent — and more typical — case. The baby survived, but was blind, deaf and had severe cerebral palsy. He admits that in cases like that one, he inevitably questions whether they’ve done the right thing in saving the infant. And he cautiously ventures what might be called a “hierarchy of luck.” “Leah and babies like her are the luckiest, but the second – luckiest group are those who die early on,” he says. “The most unlucky are those who survive but then endure lives of pain and suffering, both for the infants and their families.” It’s true that many severely premature infants will end up handicapped. But Dr. Smith notes that since the 1960s, the overall rate of handicap among children hasn’t risen. The prevalence of cerebral palsy is the same now as then. “That at least tells me that the same technology that is saving extremely premature babies is preventing handicap in other babies,” he says.

Even given the benefits of those technological advances, Dr. Smith agrees with Dr. Mulera that now the research focus at least should shift away from the technology of salvation and toward the science of prevention. “We still don’t know why labor begins early,” says Dr. Mulera. We do know some of the risk factors. As in the Fearman case, fertility drugs increase the risk of multiple births which in turn boosts the risk of prematurity. Maternal poverty is a significant factor in many cases. The use of alcohol, tobacco or other substances can also be contributors. So can infection, malnutrition, even emotional stress. Physical problems with the uterus can also play a role. The next challenge, they agree, should be to focus on making the use of technology less necessary by making prematurity a thing of the past. “We didn’t get rid of polio by treating the symptoms and developing better iron lungs,” says Dr. Smith. “We did it by finding a way — a vaccine — to stop the disease.”

For the Fearmans, there’s little talk of prevention or ethical dilemmas. With an active 3 1/2 – year – old and a 20 – month – old baby to care for, their lives are full and happy. The cry Loretta and Michael didn’t want to hear that July morning has become a welcome sound, and a daily reminder of their little girl who seems to have beaten the odds.