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Neonatal intensive care workers are caught up in an ethical dilemma, wondering where to draw the line in offering active care to babies at ever earlier gestational ages

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Watch our mini-documentary about the Nadarajah twins, and listen to reporter Kelly Grant’s talk with The Decibel about them.

The day before she went into labour, Shakina Rajendram and her husband, Kevin Nadarajah, took a stroll around their suburban neighbourhood in Ajax, east of Toronto.

It was March 1, 2022, and a hint of spring was in the air. As they walked, Ms. Rajendram, an assistant professor in the faculty of education at the University of Toronto, and Mr. Nadarajah, a finance professional, chatted idly about the gear they would need for their twins.

They talked of cribs and car seats, of vague plans to buy a bigger vehicle. There was time. The babies weren’t due until July 8.

The next morning, Ms. Rajendram, then 34, woke to discover she was bleeding. She was 21 weeks and five days into her pregnancy, barely halfway to the ideal finish line of 40 weeks.

Distraught, Ms. Rajendram called for her husband, who was sipping coffee on the couch next to the couple’s Bernese-poodle mix, Eden.

“From that minute on,” Mr. Nadarajah said, “everything was kind of a blur.”

The couple drove to the emergency department of their local hospital, where a doctor examined Ms. Rajendram and confirmed she was in labour. The babies are coming too early, he said, and nothing can be done to save them.

At 21 weeks and five days, a fetus’s skin is like tissue paper, its lungs too immature to draw breath. Death is inevitable if the baby isn’t put on a ventilator right after birth, and even then, the odds of survival are so slim that few hospitals in the world are willing to try.

“The doctor kept asking us: Do you understand you’ve lost the babies?” Ms. Rajendram said.

Ms. Rajendram didn’t understand, not really. She requested an ultrasound. There were her babies, safe inside her, their hearts thumping away. She and her husband, both devout Christians, prayed that her labour would slow down enough to give the twins a chance.

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Kevin Nadarajah and Shakina Rajendram, seen here with their dog, Eden, were thrilled when they learned Ms. Rajendram was pregnant with twins.Courtesy of family

That night, a friend alerted Mr. Nadarajah to the Instagram account of TwentyTwo Matters, a group that advocates for babies born in the 21st, 22nd and 23rd week of pregnancy – infants so small and fragile that, until the last decade, most Canadian hospitals offered them nothing more than a comfortable death in their parents’ arms.

Mr. Nadarajah reached out to the group’s Canadian co-founder for advice on what to do next. Push for a transfer to Mount Sinai, she texted.

Mount Sinai Hospital, located in downtown Toronto, is home to one of the most sophisticated neonatal intensive care units in the country. It has a track record of saving infants born at the precipice of viability.

It also has a standard, however, mutually agreed upon by the neonatology staff, that it will not provide intensive care to babies born earlier than 22 weeks. When Ms. Rajendram reached 21 weeks and six days, Mount Sinai agreed to admit her.

If Ms. Rajendram delivered before midnight, Mount Sinai staff would ensure the twins died comfortably. If she delivered afterwards, two resuscitation teams would try to save their lives.

A doctor explained the plan to Ms. Rajendram in a way that is seared in her memory. “He said, ‘If you have the babies even a few minutes before 22 weeks, it’s going to be a death sentence for them.’”

Ms. Rajendram watches the clock as she labours at Mount Sinai, praying for a delivery after midnight. Courtesy of family
Ultrasounds show the twins at the 20-week mark of Ms. Rajendram’s pregnancy, about halfway to the ideal finish line of 40 weeks. Courtesy of family
Prakesh Shah, Mount Sinai’s pediatrician-in-chief, takes part in morning rounds in the NICU. He was part of the team that cared for the Nadarajah twins during their 5½-month stay at the hospital. Melissa Tait/The Globe and Mail

An arbitrary threshold

The story of the Nadarajah twins puts an unusually sharp line under the medical and moral challenges that arise when women go into labour dangerously early. The hardest cases involve babies born in the grey zone between 22 and 24 weeks, when it is possible to save a baby’s life, but impossible to predict its quality. Some survivors emerge from the neonatal intensive care unit practically unscathed. Others are diagnosed with cerebral palsy, developmental delays and hearing or vision loss by the time they’re toddlers.

Birth before 25 weeks forces an excruciating choice on parents: Let the baby die and live with the knowledge your child might have been saved, or ask for intensive care and risk taking home a child whose medical needs exceed your family’s capabilities.

Doctors, nurses, and other neonatal intensive care workers are caught up in this ethical dilemma as well, wondering where to draw the line in offering active care to babies at ever earlier gestational ages.

Nearly 500 babies were born in the 22nd, 23rd or 24th week of a pregnancy at the 33 Canadian hospitals with high-level NICUs in 2021, the most recent year for which data are available from the Canadian Neonatal Network (CNN.)

Of 91 born in the 22nd week, 54 received palliative care at their parents’ request. Doctors tried to save the other 37 and succeeded in 27 per cent of cases, meaning that about one in four survived to be discharged from the NICU. With each week of increasing gestational age, the odds of survival improve.

Babies born in the 22nd week at Mount Sinai fared better than the Canadian average: Between 2018 and 2021, the hospital saved between 40 and 45 per cent of the 22-weekers whose parents asked for all measures to be taken, although Prakesh Shah, Mount Sinai’s pediatrician-in-chief, said the hospital’s numbers were very small and should be interpreted with caution.

Dr. Shah, who also directs the CNN and an international neonatal research network, estimated that nine or 10 Canadian NICUs have now resuscitated and cared for preemies born in the 22nd week. The number of hospitals changes all the time, he added, as more neonatology teams examine the national and international evidence and prepare to give parents a choice that didn’t exist until recently.

“These babies had no chance to survive when I started out,” said Edward Bell, a neonatologist at the University of Iowa Hospitals and Clinics who began practising 50 years ago.

Small but crucial medical advances have accumulated over that time to push the age of fetal viability down from 28 weeks gestational age to about 22 weeks today, though a few born in the 21st week have survived as well.

Doctors found that giving corticosteroids to women in threatened preterm labour accelerated the development of babies’ organs in the womb. New and improved synthetic surfactants helped prevent the air sacs in preemies’ immature lungs from collapsing. Finer equipment allowed respiratory therapists to ventilate preemies in a gentler fashion, with tiny puffs of air, cutting the risk of lung damage.

But the change that made the biggest difference in the threshold for viability, Dr. Bell said, was one of attitude.

When some hospitals with sophisticated NICUs, including his own, decided to try saving babies born earlier than 24 weeks, they proved that such resuscitations weren’t uniformly futile, as many of their colleagues presumed.

“This is just the way that progress evolves in our field,” Dr. Bell said. “You have to have folks that are more willing to push the boundaries and show what’s possible. Then others will follow.”

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Nurse Luzia Leong cares for a 34-week-old patient at Mount Sinai’s NICU, one of the most sophisticated in the country.Melissa Tait/The Globe and Mail

Dr. Shah and his neonatology colleagues have a mutual agreement not to resuscitate babies born earlier than 22 weeks. He says they set the standard in the interest of consistency and health equity. Melissa Tait/The Globe and Mail
There are limits to the care hospitals can provide for extremely premature babies. This two-millimeter-wide intubation is the smallest Mount Sinai has. Tubes like it were fed into the twins’ airways. Melissa Tait/The Globe and Mail

As some pushed the boundaries, others pushed back. In this country, the Canadian Paediatric Society published guidance in 2012 that recommended neonatologists not resuscitate babies born earlier than 23 weeks because their survival was “uncommon.”

Thirty-seven doctors, led by Montreal neonatologists Annie Janvier and Keith Barrington, the parents of a daughter born at 24 weeks, shot back with a commentary in the journal Paediatrics & Child Health that argued a 23-week cutoff was arbitrary, especially given how tricky it is to date a pregnancy that doesn’t begin with in vitro fertilization. First trimester ultrasounds can be off by as much as five days in either direction. Later ultrasounds are even less reliable.

They contended, and the CPS agreed in a follow-up statement released in 2017, that neonatologists and parents should make a joint decision about resuscitation that considered gestational age alongside other factors, including a preemie’s weight, health, and sex (girls develop faster in utero than boys.)

Dr. Shah of Mount Sinai agreed that nuanced, shared decision-making with parents in preterm labour is vital, but he and his colleagues felt they had to establish a gestational age cutoff and stick to it in the interest of consistency and health equity, even if a midnight deadline in Ms. Rajendram’s case seemed artificial.

“If we don’t have some kind of set parameters, it will come down to who is on,” Dr. Shah said. “Today I’m on and I will do it. Tomorrow somebody else is on and will not do it.”

As soon as they were born, the twins were intubated and stabilized by two resuscitation teams in this room at Mount Sinai. Melissa Tait/The Globe and Mail

Fighting for their lives

Around 11:30 p.m., Ms. Rajendram thought she felt her water break.

Ever since arriving at Mount Sinai around noon on March 3, she’d watched the clock all day as she laboured, scarcely allowing herself to breathe, let alone move.

Sobbing, she woke her husband. They called the obstetrical team. It turned out Ms. Rajendram was mistaken, and so her babies still had a chance to live.

Shortly after midnight, Ms. Rajendram’s water broke for real. At 1:22 a.m., Adiah Laelynn was born, weighing 330 grams, a little less than a can of pop.

About twenty minutes later, Adrial Luka was born, weighing 420 grams, just shy of a pound. “Overall, it was really as smooth as it could be,” said Ashraf Kharrat, the neonatologist who led the resuscitation effort.

In the resuscitation room, the twins laid in separate isolettes, swaddled in plastic, lines and tubes snaking from their bodies. Their eyes were still fused shut. Their skin was translucent, almost jelly-like.

In one of the first of many videos shot on their father’s phone, Adrial slept quietly. Adiah shook her head and waved a doll-sized hand.

Mr. Nadarajah showed the images to his wife, who was still recovering from the delivery. Her fears about how the babies would look dissolved when she saw them. “My first thought was, ‘these are my babies and they’re absolutely beautiful,’” she said.

The first videos of the twins. When Mr. Nadarajah showed his wife this footage, her first thought was, ‘these are my babies and they’re absolutely beautiful.’ Courtesy of family

With that, the Nadarajah family began a 5½-month journey in the Mount Sinai NICU, one that would be filled with joy and punctuated by terror, particularly as Adrial, whose health challenges proved more complex than his sister’s, teetered on the edge of death multiple times.

Both twins suffered brain bleeds. Their delicate skin sloughed off in layers. When a hole opened in Adrial’s bowel, doctors declared him too unstable to be transferred to Toronto’s Hospital for Sick Children for surgery. They waited, and the perforation healed on its own.

Initially, the couple dreaded family meetings where neonatologists raised the prospect of withdrawing care. That feeling dissipated as time passed, especially after Dr. Shah and his colleagues decided to stop putting the withdrawal question to Ms. Rajendram and Mr. Nadarajah, who had made it clear they wanted every measure taken to save the twins’ lives.

But in the early days, “There were several conversations where we were asked, ‘Do you guys understand what these babies are going through?’” Mr. Nadarajah said. “At what point do you recognize enough is enough?”

At Mount Sinai, the twins are surrounded by tubes and equipment as the NICU team cares for them. Their rooms are covered with pictures and encouraging words from Ms. Rajendram and Mr. Nadarajah. Courtesy of family
The twins enjoy skin-to-skin contact with Ms. Rajendram. In the NICU, Mr. Nadarajah serenades them. Courtesy of family
The twins wear helmets at home to correct the shape of their heads after months lying in their hospital isolettes. Adrial’s body is scarred from his early days in the NICU, when his fragile skin tore easily. Melissa Tait/The Globe and Mail

Unwavering hope

There are no easy answers to the question of when to give up. The decision is as much moral as it is medical, and that means that every family responds to it in its own way.

In the United States, where reproductive rights are more hotly contested than they are in Canada, debates about the limits of fetal viability are inseparable from the abortion wars – so much so that American neonatologists interviewed for this story wouldn’t touch the subject. Here, philosophical questions tend to revolve around what is owed to babies born at the edge of viability. Drs. Barrington and Janvier, the Montreal neonatologists, point out that older children – and adults, for that matter – who fall ill with diseases that make them less likely to survive than babies born in the 22nd week are not denied active treatment just because they have a poor prognosis.

On the flip side, parents who want to let their extreme preemies die, usually because they fear raising a child with medical complexities, are generally denied that choice after a certain gestational age. At Mount Sinai, the neonatology team has a mutual agreement to resuscitate babies born at 26 weeks or later, even if it’s against the parents’ wishes. According to the CNN’s latest figures, 91 per cent of 26-weekers who receive active treatment live; with odds like that, Dr. Shah said the best interests of the child must come first.

Still, doing right by extreme preemies doesn’t necessarily mean offering them treatment without limits. Tiny babies feel pain. They express it with grimaces and kicks, with heart rates that shoot up as their delicate skin is poked and prodded.

In the first weeks of his life, Adrial’s skin was so immature that Dr. Shah could see bone near the catheter that was inserted in his leg to deliver nutrition, antibiotics and other life-sustaining fluids. Tape that was supposed to hold the catheter’s line in place wouldn’t stick because the boy’s skin was oozing fluid and peeling away in layers.

“This is painful, this is stressful,” Dr. Shah said. When parents of extreme preemies ask for intensive care to continue, he is frank: “You need to understand that these things do have long-lasting effects on the developing brain.”

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Ms. Leong is one of the primary nurses who cared for the Nadarajah twins.Melissa Tait/The Globe and Mail

Although NICU staff do all they can to manage pain with drugs like morphine and fentanyl, veteran Mount Sinai NICU nurse Luzia Leong has sometimes wondered: “Are we prolonging suffering, if, in the end, ultimately, we couldn’t save the child?”

Ms. Leong wonders, too, about how the choices made possible by modern NICU care weigh on families. Personal and financial circumstances play an undeniable role in the fate of extreme preemies. Ms. Leong recalled one father who didn’t want to withdraw care for his newborn, but who knew his family couldn’t afford to have one parent stop working if the child wound up requiring round-the-clock care.

Ms. Rajendram and Mr. Nadarajah, on the other hand, felt they’d have the resources to care for the twins if they should need it. And, as the months wore on, they were ever-present in the NICU, participating in medical rounds, plastering the door to the babies’ rooms with pictures of Adiah and Adrial. Mr. Nadarajah played his guitar and sang to the babies. Ms. Rajendram pumped as much as she could, keenly aware of the benefits of “oral immune therapy,” as NICU staff call mother’s milk when they swab it inside a preemie’s cheeks.

The couple’s hope never wavered, not even when Adrial had to be transferred to SickKids for six weeks for extra care. “These parents were wonderful,” said Ms. Leong, who became one of the primary nurses caring for the twins. The whole unit fell in love with them, she added, and were inspired to give Adiah and Adrial their very best.

On Aug. 11, her 161st day in the NICU, Adiah was well enough to go home. Adrial was ready a week later, on day 167 of his NICU stay.

Sara Gambino, the family’s hospital social worker, planned the sendoff. Ms. Rajendram and Mr. Nadarajah each carried a car seat with one of the twins, neither of whom required oxygen, feeding tubes or any other supportive technology, a rare achievement for babies born so early. Staff lined the hallway as graduation music swelled over the intercom. Ms. Gambino captured the applause and farewells on her phone. “You can hear me ruining the audio in the background with my laughing and crying.”

Adrial and Adiah graduated from the Mount Sinai NICU in August, 2022, an emotional sendoff planned by social worker Sara Gambino. Courtesy of family
At home in Ajax, Ont., the twins play and exercise in their giant playpen. They are eating solid foods, smiling, making eye contact and nearly sitting up unassisted. They are meeting many of the milestones for their corrected age of eight months but are a few months behind in their play and motor skills. Melissa Tait/The Globe and Mail

You can’t measure joy

What does the future hold for Adiah and Adrial, and other babies like them?

The Canadian Neonatal Follow-up Network (CNFUN), which collects data from two dozen hospitals across the country, is planning to publish statistics on 22-weekers for the first time in its 2022 annual report, due out later this month.

The report will show that of 222 infants born in the 22nd week since 2009 and entered into CNFUN’s database, 49 survived, said Thuy Mai Luu, the organization’s director. The network has outcome data for 27 of those survivors at 18-24 months “corrected age” – the age they would have been had their mothers delivered at full term.

Eight had no neurodevelopmental impairment, eight had mild to moderate impairment and 11 had significant impairment.

There is, however, a fierce debate about how neurodevelopmental impairment is defined. CNFUN defines “significant” impairment as at least one of the following: Cerebral palsy that requires a child to use a walker or wheelchair; significant cognitive or language delays; hearing loss; and bilateral vision loss. By that standard, a child with significant neurodevelopmental impairment could be a deaf wheelchair user who struggles to communicate, or simply a kid with thick glasses.

Making matters more uncertain for parents, delivering extremely early stacks the odds against babies but doesn’t determine their physical or intellectual fate. “That’s the problem with prediction,” Dr. Luu said. “I can give general statistics. But I don’t know what’s going to happen to this individual child.”

Consider the experiences of Kayla Ibarra, the Canadian co-founder of TwentyTwo Matters, and Fabiana Bacchini, the executive director of the Canadian Premature Babies Foundation.

Ms. Ibarra gave birth to twin girls, Luna and Ema (who goes by her middle name, Rosie) at 22 weeks and two days in 2018. They only survived because their mother advocated for a transfer from her hometown hospital in Windsor to a hospital in London that was willing to resuscitate babies born as early as 22 weeks. The girls are small for their age and wear glasses, but they started junior kindergarten with their age cohort last September and haven’t required therapy of any kind.

Ms. Bacchini, by contrast, delivered her sons in 2012 at 26 weeks and one day, far enough along in her pregnancy that doctors never even raised the option of palliative care.

Michael, who had a heart condition identified in utero, was stillborn. Gabriel survived. He was diagnosed with quadriplegic cerebral palsy at 20 months of age. Now 10, Gabriel has no fine or gross motor skills and drives an electric wheelchair by using his head.

What Gabriel’s voluminous medical file doesn’t capture is his quality of life, his mother said. He’s happy – he’s fully verbal and tells her so. He goes to school. He’s a foodie who loves steak and sushi. He’s a regular at Toronto Maple Leafs games.

Ms. Bacchini adds that, at neonatal follow-ups where neurodevelopmental impairment is measured, there are things that can’t be so easily assessed. “They don’t measure the love that we have for the child,” she said. “They don’t measure the joy because it’s not tangible.”

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The family celebrates the twins' first birthdays on March 4.Chloë Ellingson/The Globe and Mail

For Ms. Rajendram and Mr. Nadarajah, the joy they find in their children is indeed beyond measure.

On March 4, as the twins celebrated their first birthdays, Guinness World Records declared Adiah and Adrial the most premature and lightest twins to have survived to age one.

The twins are meeting many of the milestones for their corrected age: eating solid food, nearly sitting up unassisted, babbling, smiling, and making eye contact as any healthy eight-month-old would, their parents say.

They are about three months behind on some of their physical milestones, delays their parents chalk up to months laying immobile in the NICU.

Dr. Kharrat, the neonatologist who resuscitated the twins and has since evaluated them at two follow-up appointments, noted at their four-month (corrected age) visit that both twins had low muscle tone and some asymmetries in how they used their limbs, an early warning sign of cerebral palsy.

But by the time of their eight-month visit, there was no evidence of asymmetry in either twin, Dr. Kharrat wrote in notes summarizing their development.

Ms. Rajendram and Mr. Nadarajah hope that, with intensive physiotherapy, Adiah and Adrial can catch up to other children their age. They also know that, as the twins grow, they may have more medical needs than children born at full term. Whatever comes, they say they’ll take it one day at a time, as a family.

Ms. Rajendram and Mr. Nadarajah think often of what would have happened if their children had been born just a few hours before the 22-week cutoff.

The inconsistency of how ultrasounds are interpreted could also have changed their fate. After the babies were discharged from the NICU, Ms. Rajendram’s obstetrician-gynecologist, Melanie Campbell, looked back through her patient’s medical records. A due date of July 8, 2022, was noted on Ms. Rajendram’s Dec. 31, 2021, ultrasound report, but when Dr. Campbell reviewed an earlier ultrasound and saw that the larger of the twins was measuring at a size consistent with a due date one day later, she concluded that “July 9th [was] likely a more accurate” due date.

In other words, it’s Dr. Campbell’s belief that Ms. Rajendram may have delivered the twins when she was 21 weeks and 6 days pregnant.

More in the continuing saga of the Nadarajah twins

The Nadarajah twins: A Globe mini-documentary

Follow the twins' journey in this short documentary, from the dash to hospital and through their long months spent in the NICU.

The Globe and Mail

The Decibel podcast

Health reporter Kelly Grant speaks with The Decibel about the Nadarajah twins and the moral and medical challenges health-care workers face in caring for extremely premature babies like them. Subscribe for more episodes.

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