For expectant parents Shakina Rajendram and Kevin Nadarajah, the doctor’s words were both definitive and devastating: Their twins were not “viable.”
“Even in that moment, as I was hearing those words come out of the doctor’s mouth, I could still feel the babies very much alive within me. And so for me, I just wasn’t able to comprehend how babies who felt very much alive within me could not be viable,” Rajendram recalled.
Still, she knew that there was no way she would be able to carry to term. She had begun bleeding, and the doctor said she would give birth soon. The parents-to-be were told that they would be able to hold their babies but that they would not be resuscitated, 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 uterus – and ended after a few months.
As crushing as the doctor’s news was, Nadarajah said, they both refused to believe their babies would not make it. And so they scoured the Internet, finding information that both alarmed and encouraged them. The babies were at just 21 weeks and five days gestation; to have a chance, they would need to stay in the womb a day and a half longer, and Rajendram would have to go to a specialized hospital that could treat “micropreemies.”
The earlier a baby is born, the higher the risk of death or serious disability, the US Centers for Disease Control and Prevention says. Babies born preterm, before 37 weeks gestation, can have breathing issues, digestive problems and brain bleeds. Development challenges and delays can also last a lifetime.
The 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 get 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 a limited number of medical centers in North America that provides resuscitation and active care at 22 weeks gestation.
Then, they say, they “prayed hard,” with Rajendram determined to keep the babies inside her just a few hours longer.
Just one hour after midnight on March 4, 2022, at 22 weeks gestation, Adiah Laelynn Nadarajah was born weighing under 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 the gestational age of 22 weeks, 1 day.
It is a record these parents say they want broken as soon as possible so more babies are given the opportunity to survive.
“They were perfect in every sense to 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 to receive proactive 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 that the hospital had their reasons. They were in uncharted territory, and I know that they had to possibly create some parameters around what they could do,” Rajendram said.
“They’re 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 go through in their fight to survive.
“I had challenging feelings, conflicting feelings, seeing how tiny they were on one hand, feeling the joy of seeing two babies on the second hand. I was thinking, ‘how much pain they are in?’ It was so conflicting. They were so tiny,” he said.
These risks and setbacks are common in the lives of micropreemies.
Dr. Prakesh Shah, the pediatrician-in-chief at Mount Sinai Hospital, said he was straightforward with the couple about the challenges ahead for their twins.
He warned of a struggle just to keep Adiah and Adrial breathing, let alone feed them.
The babies weighed little more than a can of soda, with their organs visible through translucent skin. The needle used to give them nutrition was less than 2 millimeters in diameter, about the size of a thin knitting needle.
“At some stage, many of us would have felt that, ‘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 surgical tape would mean that 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,” Rajendram said.
They had to weigh all the risks of going forward and agreeing to more and more medical intervention. There could be months or even years of painful, difficult treatment ahead, along with the long-term risks of things like muscle development problems, cerebral palsy, language delays, cognitive delays, blindness and deafness.
Rajendram and Nadarajah did not dare hope for another miracle, but they say they knew their babies were fighters, and they resolved to give them a chance at life.
“The strength that Kevin and I had as parents, we had to believe that our babies had that same strength, that they have that same resilience. And so yes, they would have to go through pain, and they’re going to continue going through difficult moments, even through their adult life, not only as premature babies. But we believed that they would have a stronger resolve, a resilience that would enable them to get through those painful moments in the NICU,” Rajendram said.
There were painful setbacks over nearly half a year of treatment in the hospital, especially in the first few weeks.
“There were several instances in the early days where we were asked about withdrawing care, that’s just a fact, and so those were the moments where we just rallied in prayer, and we saw a turnaround,” Nadarajah said.
Adiah spent 161 days in the hospital and went home on August 11, six days before her brother, Adrial, joined her there.
Adrial’s road has been a bit more difficult. He has been hospitalized three more times with various infections, sometimes spending weeks in the hospital.
Both siblings continue with specialist checkups and various types of therapy several times a month.
But the new parents are finally more at ease, celebrating their babies’ homecoming and learning all they can about their personalities.
The twins are now meeting many of the milestones of babies for their “corrected age,” where they would be if they were born at full-term.
“The one thing that really surprised me, when both of them were ready to go home, both of them went home without oxygen, no feeding tube, nothing, they just went home. They were feeding on their own and maintaining their oxygen,” Shah said.
Adiah is now very social and has long conversations with everyone she meets. Their parents describe Adrial as wise for his years, curious and intelligent, with a love of music.
“We feel it’s very important to highlight that contrary to what was expected of them, our babies are happy, healthy, active babies who are breathing and feeding on their own, rolling over, babbling all the time, growing well, playing, and enjoying life as babies,” Rajendram said.
These parents hope their story will inspire other families and health professionals to reassess the issue of viability before 22 weeks gestation, even when confronted with sobering survival rates and risks of long-term disability.
“Even five years ago, we would not have gone for it, if it was not for the better help we can now provide,” Shah said, adding that medical teams are using life-sustaining technology in a better way than in previous years. “It’s allowing us to sustain these babies, helping keep oxygen in their bodies, the role of carbon dioxide, without causing lung injury.”
Adiah and Adrial’s parents say they’re not expecting perfect children with perfect health but are striving to provide the best possible life for them.
“This journey has empowered us to advocate for the lives of other preterm infants like Adiah and Adrial, who would not be alive today if the boundaries of viability had not been challenged by their health care team,” Rajendram said.