The Decibel - The story of the world’s most premature twins to survive

Episode Date: April 10, 2023

Adrial and Adiah Nadarajah are the youngest twins ever born to survive to their first birthday – they were born at just 22 weeks, about half of a full term pregnancy. If they had been born just two hours earlier, medical staff would not have tried to resuscitate them. They would have been considered too young to live.Their story is part of the medical and moral challenges that arise when babies are born dangerously early. Kelly Grant spoke with the parents and doctors of the babies – and attended the twins’ first birthday party.Questions? Comments? Ideas? Email us at [e-mail]

In this video, you see two extremely tiny babies. They're in separate beds, wrapped in plastic. They're intubated, which means they've got a tube in their airway that's helping them to breathe. Their eyes are still fused shut. Their skin is almost translucent. They're so minuscule, you could hold them in the palm of your hand. That's The Globe's health reporter, Kelly Grant. So this is Adriel and Adia Nadarajah,

and they are Canadian babies who hold the Guinness World Record for the most premature and lightest twins to have survived their first birthday. Kelly has been speaking with the parents of those two babies and their doctors. They were born 22 weeks and zero days into their mother's pregnancy, and a full-term pregnancy runs 40 weeks, so that's a little over halfway into their mom's pregnancy. This story is part of a much larger and difficult discussion about babies born at the edge of viability. When to try to save them

and when to let them die because they're just too young and probably won't survive. These babies almost didn't make it. Today, Kelly is going to tell us the story of Adia and Adriel as the twins turn a year old. Kelly is going to take it from here. I'm Kelly Grant, and you're listening to The Decibel from The Globe and Mail. And then tell me about when you guys learned you were having twins. Yeah, I can go first, I guess. I got in touch with Shakina Rajendram and Kevin Nadiraja through Mount Sinai Hospital in Toronto, and they're the parents of Adriel and Adia.

Mount Sinai introduced me to this family right after they and their doctor, nurse and social worker all wrote a piece for the Canadian Medical Association journal about what was involved in the birth and care of these babies. So even a few days leading up to the baby's birth, everything was still going along really well. We still had no indication that we were going to have the babies. So soon we would... The day before Shakina went into labor, so this is early March, she and Kevin had a really normal day. They went for a walk. They had a nice dinner. They were talking in sort of hazy terms about things they needed to get for the babies. We were just starting to think about what we would need in our house.

We're starting to look into upgrading our vehicle. We're starting to think about car seats and cribs and so on. But the due date was so far away. It wasn't until July 8th that they felt they had boatloads of time. So then overnight, Shakina had some pain. And when she woke up in the morning, she found she was bleeding. So she and Kevin rushed to their local hospital. She was examined.

He pulled away, he looked at the nurse and he said, yeah, I think this, and then he looked at us, I think this pregnancy is a loss uh the babies may come out any minute uh now or during the day and there's absolutely nothing we can do you you've lost this pregnancy i'm sorry for you yeah so we were shocked uh and i remember asking the doctor again and again what do you mean what do you mean and he just kept saying you have lost the babies the babies are going to be born today in the next few minutes of the next few hours. They are not going to survive. They're not going to survive. You've lost the both of them.

I'm very sorry. I'm very sorry. The doctor at the local hospital told them all they could provide was comfort care, which means the babies would be born too young to survive, and the hospital would help the babies have a comfortable death. And then the doctor kept asking us again, do you understand that you've lost the babies? Do you understand that you've lost the babies? And we just said, no, this can't be happening. Well, I remember looking at Shakina and I've never seen her face that way. It was just a blank

pale because I was overcome with shock. I just couldn't process what was happening because like I could still feel the babies within me I could still feel them moving they had become you know more active they were starting to kick at that point so I could still feel them within me and so it was just a big disconnect between what I felt in my body and what I was hearing the doctors say. In the meantime, though, the babies had not actually been born yet. And Shakina and Kevin asked for an ultrasound. And they could see that as long as the babies were still inside, their heartbeats were strong, they had no known health problems. And it was never clear why Shakina went into labor so early, which often happens with premature labor. Sometimes there are reasons for it

and other times doctors just can't say why it happens. I had a natural urge to fight for my babies, to keep the babies alive. I felt like it was my one most important duty as their mom to protect them, which means not accepting the outcome that was predetermined for us. Shakina and Kevin had heard that Mount Sinai had a really high-level NICU, and they had asked about the possibility of a transfer.

As far as they know, their local hospital asked for that transfer, but because Shakina was only 21 weeks and five days into her pregnancy, when she first went into labor, Mount Sinai initially said no to the transfer. And so the next day, Shakina, still pregnant, the baby's still not born, asked again about the transfer to Mount Sinai. And because she was now at 21 weeks and six days, Mount Sinai agreed to admit her. The actual day of her pregnancy really mattered because Mount Sinai has a standard mutually agreed upon by their neonatology staff that they will only resuscitate babies born 22 weeks or later. So once Shakina arrived at Mount Sinai, the OB team there made it clear to her that if she delivered at 21 and 6, they would only provide comfort care.

If she delivered past midnight, so once she'd reached this 22-week cutoff, that they would try to resuscitate and save the baby's lives. I remember the OB, I think, doctor who accepted the transfer, he actually said these words that really have stuck with me. He said that if you have the babies even a few minutes before 22 it's going to be a death sentence for them I thought that once I got to Mount Sinai even though I was at 21.6 I thought that if the babies are born that day no one's going to deny life to babies who are born you know they're going to do no harm they're going to resuscitate the babies. But then I realized that, no, there is this really strict policy in place

and I have to get to 22 or my babies are going to die. Mount Sinai has set this cutoff for a couple of reasons. One is because they want to ensure that there is consistency for women who come in in labor early in pregnancy. And this is in order to maintain the consistency. I talked to Dr. Prakash Shah. He's the pediatrician-in-chief at Mount Sinai. And he's also the director of the Canadian Neonatal Network and an international neonatal research network as well.

Because the worst thing you want is that which baby gets a resuscitation depending upon who is on. Now the reason they say they have suggested 22 weeks as a cutoff is because so few babies born before that have survived. Below 22 and zero at this stage, we do not have the technological capability as well as understanding of what their outcomes are. Survival rates for babies born in the 22nd week of a pregnancy sit at somewhere between 25% and 30%, depending on the year. I think an important point to understand is that at that really early age, doctors and parents will try to do their best to make a joint decision about what they think is best for the family. And at that early stage of a pregnancy, at least in 2021, 60% of the babies who were born at that age, their parents chose palliative care.

This case is unique and particularly tricky because of how close to the 22-week cutoff Shakina delivered. Shakina's water broke about 15 minutes after midnight, and Adia was born at 1.22 a.m., and Adria was born about 20 minutes after that. For me, it just felt like, wow, all the pain that I went through in the past two days, every difficult conversation, it's all been so worth it because I've made it. I've just made it past this midnight point and my babies are going to be alive.

They're going to be okay. If they'd been born an hour earlier, the hospital said that it would not try to resuscitate them. But because they were born after midnight, they had two teams ready to go, and they did everything possible to save the baby's lives. As soon as they were born, they both had to be whisked away to a resuscitation room where they were intubated and stabilized. I recall walking into the recess ward, the atmosphere seemed tense. It was warm as well. Adia weighed 330 grams, which is about the weight of a can of soup. Adriel weighed 420 grams. That's just a little bit under a pound. So they were just incredibly tiny. So I recall walking to Adia's isolate first. She was all bagged up and felt a mix of emotions flooding inside. Like on one hand, wow, this is my daughter. But on the other hand, she's so tiny,

she's probably going through so much pain and like her skin's not formed, it's translucent. I could see through her skin and her organs. So yeah, it was just a mix of feelings. Caring for babies born this premature is really complicated. The doctors and nurses who took care of these babies had to think about everything from how you ventilate them so that you don't damage the lungs, to making sure they didn't get too many infections to watching out for brain bleeds, which are quite common in babies born this early and which both Adia and Adriel experienced. There was not much that we could do. We were not allowed to touch the babies yet

because they were so fragile, skin was fragile, and they were wrapped with lots of different bandages and so on to kind of preserve their skin. They couldn't touch the babies for a little while at the beginning of their lives. And then Shakina and Kevin were able to do what the NICU staff call hand hugs, where they can just put their hands inside the isolette and sort of touch the baby from rump to crown and just let them feel the touch and love from their parents. It's amazing that the babies have survived their birth, but they're not out of the woods yet. We'll be right back.

Most hospitals in Canada don't have the expertise or that can theoretically handle some of these very young babies. very early in a pregnancy at a hospital, and that delivery happened very quickly at a hospital that doesn't have a high-level NICU, chances are that those babies' fates would be sealed just by where they were born. So if you go back a few decades, the lower limits of viability was 28, 27 weeks. We started with 27 weeks. I mean, we started with 24-weeker. Ten years ago, we were debating about 23-weeker. So this has always been a changing goalpost.

It's gone down by, you know, sort of about a week per decade to where we are now. That has a lot to do with attitude and simply with the feeling that it was worth trying. What I call it a self-fulfilling prophecy. If you don't resuscitate anybody at 22 weeks, your survival would be zero. And then you will keep on quoting that, no, no, no, nobody survives. And as some hospitals and some countries were more willing to try saving babies born at younger ages, they got better at figuring out what worked. What best thing has happened at Mount Sinai is when we started working on 22-week, our outcome of 23 weeks started to improve.

Because we got better and better at doing it. So previously 23-weeker, which we were quoting 40%, 30, 40% survival, now it became 50% survival, 55% survival. So every gestational age, we push the boundary up in terms of outcomes getting better. So things have improved for babies born at really early gestational ages,

but there are still challenges and complications for them down the road, assuming they do survive to be discharged from the NICU. Some of the complications they're at risk for include cerebral palsy, developmental delays, vision loss, hearing loss. But it's very difficult to predict which babies are going to wind up facing which kinds of challenges. It's very hard for parents when they are in the delivery room trying to decide, should I choose comfort care for this baby or should I ask that all measures be taken? Because there is just no accurate way to predict what the health outcome will be for their baby. All

you can do is say, here's the general statistics, here are the possible risks, and we don't know precisely what's going to happen with your baby. This prematurity has a lot more implications than just a single baby. The whole family gets affected. I spoke with several doctors about what are the considerations that parents have to think about when they're making this decision of, do I choose comfort care for this baby, or do I ask for all measures to be taken? And the doctors told me that a very large consideration for parents is what are their

personal circumstances, right? If this pregnancy is in a woman who is 42 and has been trying for a decade with IVF to have a baby and feels this is her only chance. She might make a decision that is different from a family who already has four kids at home and is thinking, if this baby winds up having a lot of medical needs, do I have the money or the bandwidth to give that baby and my other four children a good life? I like splitting the NICU journey into three phases, like the early difficult phase, the long middle, and then the home stretch. The first few months of Adia and Adriel's lives were pretty challenging. There were several times when Shakina and Kevin thought they were going to lose the babies. I was just watching the monitors and I saw her heart rate plummet really, really low and her oxygen levels plummet really low as well. And her breathing tube was taped to her cheeks and I recall the doctor saying,

just rip it off, it's life or death. And so they had to rip it off and it actually peeled off. And that's when I realized how fragile the baby's lives were and that in a matter of a few seconds something could happen and you know they could be really close to death. There were times, especially in the very early days of their lives, when the doctors talked with Shakina and Kevin about whether it was time to, as they put it, redirect care. And that means thinking about withdrawing care and letting the babies die.

Do you have any way of knowing whether those babies are feeling pain when you're doing this? Oh, absolutely, they are feeling pain. And that's what has been the dialogue and discussion with the parents at all the time, that look, this is painful, this is stressful, this is not. Anyone should go through. And we don't want it to go through, but since we are continuing, you need

to understand that these things do have long-lasting effect on the developing brain. For us, it didn't matter what stage we were at in the pregnancy. If there was a challenge that came up with the baby's health, we would deal with it. We would embrace it and we would take it upon ourselves as parents to help our babies get through that medical challenge that may arise and so there were a lot of ifs like if this happens we're going to

be um we're going to be at a dead end if this happens and so i remember always challenging the doctors and saying that has this happened yet and they would say no this hasn't happened yet it could happen and so i would then challenge the doctors and say, if we haven't reached the point yet, let's keep going. And let's take it day by day. We're not in denial about long-term difficulties and long-term risk, but we wanna take it day by day and focus on what the challenges are for today

and what we can do in today to treat the baby and provide the best care possible. In August of 2022, the babies finally graduated from the NICU. Adia had been in for 161 days and Adriel was ready to go home about a week later, which was 167 days into his NICU stay. 167 for Adriel and it was so special because our social worker then planned a really beautiful send-off where all of the nurses on duty, the respiratory therapists, the doctors, other staff on duty, they came in and they lined up, you know, towards the exit of the NICU. And they played the graduation song for the babies.

And it was so nice because we asked to bring Adia in so that we could walk both babies out together. There's video of this and it's really sweet. It includes Shakina and Kevin each carrying one baby in a car seat, and the hospital announces over the intercom that the Nataraja twins are graduating, and all of the staff come down, and they line the hallway, and they clap, and they cheer. Thank you. We really miss and they cheer. Thank you.

We really miss you so much. Thank you. You know, the most amazing thing was that these babies were going home without any technological support, which for babies born that early was a really rare achievement. You know where the musician is going? Yeah. That early was a really rare achievement. Shakina and Kevin threw a really pretty epic party for the twins' first birthday. Happy birthday to you. They had it at a golf club in Whitby.

They had lots of family and friends, pink and blue balloons everywhere. The kids were dressed in like gorgeous little outfits. Adriel had a bow tie. Adia was wearing sort of this like tutu dress. And they had a lunch. They cut the cake and they gave a really moving speech about how much the support of their family and friends had mattered during this long and difficult first year of their children's lives. So thank you so much for praying for us. Thank you for loving us, loving the babies from afar.

But we never felt alone. We always felt your love. We always felt your love. You always love your love. I visited them at home in Ajax, and the twins are doing really well in many ways. They're meeting a lot of the milestones for their corrected age, which is the age the babies would have been if their mother was delivered at full term. They're eating solid foods.

They are rolling over, babbling. Their neck control is good. They smile and make eye contact. They're almost sitting up unassisted. So a day-to-day routine really revolves around feeding the babies, making sure that they get some exercise in as well. So our physiotherapists show us different exercises that we can do, like assisted sitting and lots of different tummy time, using the ball, using the playpen and so on.

So things are going well for the twins, you know, much better than you might expect for babies born so young, but there is still a chance they'll face medical challenges down the road. Yeah, we were told several times that we won't know the full extent of their medical needs until they reach maybe a three-year mark. But again, we're not going to worry about what we don't know and about all the ifs. We're just going to meet them where they're at right now, look to see what their needs today are,

and then help them, support them with their current needs rather than worrying about what the next challenge might be that gets presented so looking at how far you've come and where you are now what do you imagine dream about for the twins future for me i'm just excited for every single day and what new discoveries we identify in them every day. But in terms of their future, just excited for their personalities to come out and for them to grow and be healthy kids and, and to support their development along every step. Right. And we hope that one day they can give back to the medical system that helped

bring them to where they are today. Yeah. We'd love for the babies to become advocates for other preemies, for the babies to themselves tell their own story and spread awareness about why it's important to save the lives of other babies. And so we're just really excited for who they're going to become as a result of everything that happened to them. Both Shakina and Kevin are musicians, but Kevin particularly loves playing the guitar. And all during their stay in the NICU and even at home now, he often plays guitar and sings for the babies. That's it for today. My sunshine's away You are my sunshine

That's it for today. I'm Mainika Raman-Wilms. Melissa Tate gathered audio for this episode. Our producers are Madeline White, Cheryl Sutherland, and Rachel Levy-McLaughlin. David Crosby edits the show. Adrian Chung is our senior producer,

and Angela Pachenza is our executive editor. Thanks so much for listening, and I'll talk to you tomorrow.