For parents-to-be Shakina Rajendram and Kevin Nadarajah, the doctor’s words were both final and devastating: their twins were not “viable”.
“Even at that moment, as I heard those words come out of the doctor’s mouth, I could feel the babies very much alive inside me. And so for me, I just couldn’t understand how the babies that felt so alive inside me couldn’t be viable,” Rajendram recalls.
However, she knew there was no way she could continue her tenure. She had started bleeding and the doctor said she would give birth soon. The parents-to-be were told they could hold their babies but that they would not resuscitate them as they were too premature.
Rajendram, 35, and Nadarajah, 37, had married and settled in Ajax, Ontario, about 35 miles east of Toronto, to start a family. They had conceived once before, but the pregnancy was ectopic – outside the womb – and ended after a few months.
As overwhelming as the doctor’s news was, Nadarajah said, both refused to believe their babies wouldn’t make it. And so they searched the Internet, finding information that both worried and encouraged them. The babies were just 21 weeks and five days pregnant. To stand a chance, they would need to stay in the womb for a day and a half longer and Rajendram would have to go to a specialist hospital that could treat ‘minorities’.
The earlier a baby is born, the greater the risk of death or serious disability, according to the US Centers for Disease Control and Prevention. Babies born prematurely, before 37 weeks of gestation, can have breathing problems, digestive problems and brain bleeding. Developmental challenges and delays can also last a lifetime.
Problems can be especially severe for micropreemies, those born before 26 weeks gestation who weigh less than 26 ounces.
Research has found that infants born at 22 weeks who receive active medical treatment have survival rates of 25% to 50%, according to a 2019 study.
Rajendram and Nadarajah requested a transfer to Mount Sinai Hospital in Toronto, one of the few medical centers in North America that provides resuscitation and active care at 22 weeks’ gestation.
Afterward, they say, they “prayed hard,” with Rajendram determined to keep the babies inside her just a few more hours.
Just one hour after midnight on March 4, 2022, at 22 weeks gestation, Adiah Laelynn Nadarajah was born weighing less than 12 ounces. Her brother, Adrial Luka Nadarajah, joined her 23 minutes later, weighing not quite 15 ounces.
According to Guinness World Records, the pair are both the most premature and lightest twins ever born. The previous record holders for premature twins were the Ewoldt twins, born in Iowa at a gestational age of 22 weeks, 1 day.
It’s a record these parents say they want broken as soon as possible to give more babies a chance to survive.
“They were perfect in every way for us,” Rajendram said. “They were born smaller than the palm of our hands. People still don’t believe us when we tell them.”
The babies were born at just the right time to be eligible for preventive care, resuscitation, nutrition and vital organ support, according to Mount Sinai Hospital. Even an hour earlier, the care team may not have been able to intervene medically.
“We just didn’t really understand why that strict cut-off at 22, but we know the hospital had their reasons. They were in uncharted territory and I know they probably had to create some parameters around what they could do,” Rajendram said.
“They are definitely miracles,” Nadarajah said as he described seeing the twins in the neonatal intensive care unit for the first time and trying to come to terms with what they would be going through in their fight to survive.
“I had challenging emotions, conflicting emotions, seeing how tiny they were on the one hand, feeling the joy of seeing two babies on the other. I was thinking, “how much do they hurt?” It was so contradictory. They were so tiny,” she said.
These risks and failures are common in micropremier life.
Dr. Prakesh Shah, the chief pediatrician at Mount Sinai Hospital, said he was upfront with the couple about the challenges their twins faced.
He warned of a struggle just to keep Adia and Adrial breathing, let alone feed them.
The babies weighed little more than a soda can, their organs visible through the translucent skin. The needle used to feed them was less than 2 millimeters in diameter, about the size of a fine knitting needle.
“At some stage, many of us would feel like, ‘Is this the right thing to do for these babies?’ These babies were in significant pain, distress and their skin was peeling off. Even removing the surgical tape would mean their skin would peel off,” Shah told CNN.
But what their parents saw gave them hope.
“We could see through their skin. We could see their hearts beating,” said Rajendram.
They had to weigh all the risks to go ahead and agree to more and more medical intervention. There could be months or even years of painful, difficult treatment, along with the long-term risks of problems such as muscle growth problems, cerebral palsy, language delays, cognitive delays, blindness and deafness.
Rajendram and Nadarajah didn’t dare hope for another miracle, but say they knew their babies were fighters and decided to give them a chance at life.
“The strength that Kevin and I had as parents, we had to believe that our babies had the same strength, that they have the same resilience. And so yes, they should go through pain and will continue to go through hard times, even in their adult lives, not just as premature babies. But we believed that they would have a stronger resolve, a resilience that would allow them to get through those painful moments in the ICU,” said Rajendram.
There were painful setbacks for nearly half a year of hospital treatment, especially in the first few weeks.
“There were several instances in the early days where we were asked about the withdrawal of care, that’s just a fact, and so those were the times when we gathered in prayer and saw a turnaround,” Nadarajah said.
Adiah spent 161 days in hospital and went home on August 11, six days before her brother, Adrial, joined her there.
Adrial’s road was a little more difficult. He has been hospitalized three more times with various infections, sometimes spending weeks in the hospital.
Both brothers continue with special check-ups and various types of treatment several times a month.
But new parents are finally more relaxed, celebrating their babies’ homecoming and learning all they can about their personalities.
The twins are now meeting many of their “corrected age” baby milestones, where they would be if they were born at term.
Ariah is very social and has great conversations with everyone she meets. Their parents describe Adrial as wise beyond his years, curious and intelligent, with a love for music.
Their parents hope their stories will inspire other families and health professionals to reevaluate the issue of viability before 22 weeks’ gestation.
“Even five years ago, we wouldn’t have done it if it wasn’t for the best help we can now provide,” Shah said, adding that medical teams are using life-sustaining technology in a better way than in the past. years. “It allows us to sustain these babies, helping to keep oxygen in their bodies, the role of carbon dioxide, without causing lung injury.”
Arya and Adriel’s parents say they don’t expect perfect children in perfect health, but try to give them the best life possible.
“This journey has enabled us to support the lives of other premature babies like Adia and Adrial, who would not be alive today if the limits of viability had not been challenged by their healthcare team,” Rajendram said.