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

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Xfinity or visit a store today restrictions apply Xfinity mobile requires expin internet reduce speeds after 20 GB of usage per line data thresholds may vary okay so this week we are reiring our producers favorite episodes so today I’ve got Rachel with me hey Rachel hey Mica so which episode from this year did

You choose so I did this episode with Kelly Grant uh earlier this year about these babies born sort of right at the edge of viability so they are the youngest and lightest twins born to survive they have a Guinness World Record already yeah and they were born

So early that sort of they almost they almost didn’t make make it and it’s this really incredible story with these really great you know compelling humans sort of at the center of it about sort of this really difficult problem so this episode is different than what we

Usually do right Rachel cuz I’m I’m not really in this episode you and Kelly just kind of take it away so tell me like how did you actually put this together yeah so I wanted Kelly to sort of take us through the story of these twins and their parents because you know

There’s so much audio to work with here they did these long interviews with them you know the parents were taking all these videos of their kids and it was one of those stories where I knew what I wanted the ending to be before I you

Know I sort of figured out the rest of it so I won’t give it away for you guys you have to listen to the ending but I knew what this moment was and then I sort of had to work backwards how am I going to get to this moment where it

Sort of feels like you know the culmination you know I’d gone through all this tape and all this audio how am I going to get to this moment in about 20 minutes to you know make that land for the audience as well and then I sat

Kelly down in the studio and I was sitting where you are was in your chair and I was asking her questions like tell me about the Twins and you know tell me about the day they were born and she would answer them and then I would just

Go through and like cut my own questions and so it’s been a few months since we first aired this story but how how are the babies how are the twins doing now yeah so I I have sent a message to shaa and Kevin the parents just to see how

They’re doing and it seems like they’re doing really well so they’re are 21 months old now are 17 months corrected which is sort of how they describe you know if they were born full term they’d be 17 months old we’re able to do a lot more with the babies now like reading

And singing together every day going on walks and road trips taking them to indoor playgrounds and lots of play dats some of our highlights this past year were taking them to a cottage for the first time in the summer going to the Mount Si niku reunion picnic having

Their baby dedication at church photos with Santa and we’re especially exced excited about Christmas you know they’re crawling exploring climbing they’re babbling they’re you know they’re they’re saying some words now m m she kind of sent me you know this sort of big folder of videos of you know them

You know giggling and playing with each other and it’s really sweet is that a funny word poto they still have a lot of medical appointments that they’re doing but sort of all in all you know they’re getting good news they’re hitting all the Milestones all right we’ll hear the episode thanks Rachel thanks

Man 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 adaia Nar Raja and they are Canadian babies who hold the Guinness world record for the most premature and lightest twins to have survived to 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 uh 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 deciel from the glob and mail and then tell me about when you guys learned you having twins yeah I can go f I guess so I just I got in touch with shaa Regen and Kevin naraja through Mount Si Hospital in

Toronto and they’re the parents of Adriel and adaa mount siai 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 checked out so even a few 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 um so soon we would the day before shikina 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 um we were just starting to think about what we would need in our house

You know we’re starting to vehicle well look into upgrading our vehicle we’re starting to think about car seats and and cribs and so on so just enjoy the due date was so far away it wasn’t until July 8th that they they felt they had boatloads of time so then overnight shaa

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 uh she was examined um he pulled away he looked at the nurse and he said um 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 now or during the day and there’s absolutely nothing we can do you’ve you’ve lost his pregnancy I’m sorry for your loss 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 or the next few hours they 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 um 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 like this can’t be happening I just well you like I remember looking at China and I’ve never seen her face that way like

It was just a BL I was a 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 um 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 doctor say in the meantime though the babies had not actually been

Born yet and shaa and Kevin as 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 um and you know it was never clear why Shino went into labor so early um which often happens

With um with premature labor sometimes there are reasons for it and other times doctors just can’t say why it happens I 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 which means not Shina and Kevin had heard that Mount Si 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 shikin was only 21 weeks and 5 days into her pregnancy when she first went into labor m Sinai initially said no to the transfer and so the next day um shikina still pregnant the baby still not born asked again about the transfer to Mount Si and because she was now at 21

Weeks and 6 days Mount Si agreed to admit her the actual day of her pregnancy really mattered because Mount Si has a standard mutually agreed upon by their neonatology staff that they will only resuscitate babies born 22 weeks or later so once shikina arrived at Mount

Si the OB team there made it clear to her that if she delivered at 21 and6 they would only provide comfort care if she delivered past midnight so once she’d reach this 22- we cut off that they would try to resuscitate and save the baby’s lives I remember um the um OB

I think Doctor Who 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 they got to

Mount Si even though I was at 216 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 Si has set this cut off 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 pet Shaw he’s the pediatrician and chief at Mount Si and he’s also the director of the Canadian neonatal Network and an international neonatal research Network as well cuz you don’t what what the worst thing you want is that who which baby gets a

Resuscitation depending upon who is on now the reason they say they have suggested 22 weeks as a cut off is because so few babies born before that have survived below 22 and Z 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 um 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 in 2021 um 60% of the babies who were born at that age their parents chose paliative care this case is unique and particularly tricky because of how close

To the 22- we cut off shaa delivered shika’s water broke about 15 minutes after midnight and adaa was born at 1:22 a.m. and Adriel was born about 20 minutes after that for me it just felt like wow all the pain that I went through the past two days every

Difficult conversation it’s all been so worth it because it 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 recitate 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

Resour ward um it it the atmosphere seemed tense it was warm as well a weigh 330 G which is about the weight of a can of soup Adriel weighed 420 G that’s just a little bit under a pound so they were just incredibly tiny and so I recall walking

To ad’s uh isolate first she was all bagged up and and felt a mix of emotions flood flooding inside like on one hand um 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 um so yeah it was just a a mix of feelings caring for babies born this premature is really complicated the doctors and nurses who took care of these babies um had to think about everything from how you ventilate them

So that you don’t damage the lungs to caring for this really fragile skin um 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 adaia and Adriel experienced there was not much

That we could do we were not allowed to touch the babies yet because they were so of fragile skin was fragile and they were wrapped with lots of different you know um bandages and so on to kind of preserve their skin we they couldn’t touch the babies for a little while at

The beginning of their lives and then and Kevin were able to do what the niku staff Call hand hugs where they can just put their hands inside the isolat and sort of touch the baby from rump to Crown and just let them feel the touch and love from their parents you moved hi

You is your mom touching you it’s amazing that the babies have survived their birth but they’re not out of the woods yet gentle like that baby we’ll be right back looking to save big on holiday shopping Xfinity mobile has you covered now through January 10th ask how

Existing xinity customers can get a free unlimited intro line for a year when they buy one line of unlimited plus see how to get $400 off an eligible 5G phone visit xfinitymobile.com call 1800 Xfinity or visit a store today restrictions apply xinity mobile requires xinity internet reduce speeds

After 20 GB of usage per line data thresholds may vary most hospitals in Canada don’t have the expertise or the equipment to care for babies born this prematurely Canada has 33 tertiary which means sort of highlevel hospitals that have highlevel NICU that can theoretically handle some of these very

Young babies um so most of the time if you if a woman were to give birth 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 you know the the lower limits viability was you know 28 27 weeks I mean we started we started with 24 week or 10 years ago we were debating about 23 weeker so this has always been a changing goal post

It’s gone down by you know sort of about a week per decade to 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 what I call is 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 Si

Is when we started working on 22 week our outcome of 23 week started to improve because we got better and better at doing it so previously 23 weer which we were quoting 40% 30 40% survival now it become 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 nicku some of the complications they’re at risk for include cerebral paly

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’s 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 a very large consideration for parents is what what are their personal circumstances right if 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

Face of our niik journey I I I like splitting the niik journey into three faces like the early difficult phas the long middle and then the home stretch and so the early early the first few months of adaia and adriel’s lives were pretty challenging uh there were several

Times when shaa and Kevin thought they were going to lose the babies regretfully wrong and we saw I was just watching the monitors and I saw her heart weight plummet really really low and her oxygen levels plummeted really low as well and I and her breathing tube

Was taped to her cheeks and I recall the doctor saying um just rip it off it’s life or death and and so they had to rip it off and it actually skin peeled off peeled skin off and that’s when I realize how fragile the baby’s lives

Were and that in the matter of a few seconds something could happen and um you know they could be really close to death and there were there were times especially in the very early days of their life lives when the doctors talked with shaa 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 oh absolutely they are peeling 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 and we don’t want it to go through but since we are continuing you need to understand that these are these things do have long lasting effect on the developing brain

For us like it didn’t matter what stage we were at in the pregancy 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 um we’re not in denial about long-term difficulties and uh long-term risk but we want to take it

Day by day and focus on what the Alles 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 ncu adaa 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 the nurses on duty the respiratory therapists the doctors um um

Other other staff on duty they they came in and they lined up uh you know uh to towards the exit of the niku and they played the graduation song for the babies and it was so nice because we asked to bring a in so that we could walk both babies out together

There’s video of this and it’s really sweet uh and includes shaa and Kevin each carrying one baby in a car seat and the hospital announces over the intercom that the naraja twins are graduating and all of the staff come down and they line the hallway and they clap and they cheer thank

You 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 the musician shaa 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 whitbey they had lots of family and friends um 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 um 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 um thank you for

Loving us loving the babies from afar uh but we we never felt alone we always felt real love we always felt real love I visited them at home uh 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 mothers 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 uh so a day-to-day routine really revolves around uh feeding the

Babies making sure that they uh uh get some exercise get some exercise in as well so our physiotherapist uh show us different exercises that we can do like assisted sitting and lots of different tummy time using the ball using the the play pen and so on uh so throughout the

Day 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 to celebrate yeah we were told several times that we won’t know the full extent

Of the the their medical needs until they reach maybe a three-year Mark but again we’re not 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 uh look to see what their needs today are and then

Help them you know support 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 uh 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 and put them to grow and be healthy kids and and um to support their development along every step right and

And we hope that one day they can give back to the medical system that helped yeah bring them to where they are today yeah we love for the babies to become advocates for other premies uh 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 for um you know who they’re going to become as a result of everything that happened to them you are both sha and Kevin are musicians but Kevin is uh particularly loves playing

The guitar and all during their stay in the ncu and even at home now he often plays guitar and sings for the babies that’s it for today I’m manica ramman Wilms Melissa Tate gathered audio for this episode our producers are meline white Cheryl Sutherland and Rachel Levy mlin David Crosby edits the

Show Adrien Chung is our senior producer and Angela Penza is our executive editor thanks so much for listening and I’ll talk to you tomorrow looking to save big on holiday shopping Xfinity mobile has you covered now through January 10th ask how existing xinity customers can get a free

Unlimited intro line for a year when they buy one line of unlimited plus see how to get $400 off an eligible 5G phone visit xfinitymobile.com call 1800 Xfinity or visit a store today restrictions apply xinity mobile requires xinity internet reduce speeds after 20 GB of usage per line data thresholds may vary

For the holidays, The Decibel is sharing their favourite stories of the year, with the producers taking you behind-the-scenes on how the episodes were made, what inspired them and all the tidbits that never made it into the original airing.

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Adrial and Adiah Nadarajah are the most premature 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.

This episode originally aired on April 10, 2023

Questions? Comments? Ideas? Email us at [email protected] (mailto:[email protected])

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