Families share their stories of premature births and high-risk pregnancies in Cork exhibition

High-risk pregnancies and premature births can be a very traumatic time for mums and dads to be, but a new project is helping them share the experience, writes ELLIE O’BYRNE
Families share their stories of premature births and high-risk pregnancies in Cork exhibition
Baby Amelia Stokes in her incubator. When the babies are born they are brought straight to the NICU for treatment and it can be days before parents are able to hold them. Although seeing them with wires and monitors was distressing, there was also the relief for the mothers that the babies could be medically treated: "She is in the best place. She is out, she is getting what she needs."

PREGNANCY is supposed to be a time of joy, but for the many expectant mothers and their partners who experience complications in pregnancy, it can also be a time of enormous stress.

Mothers may imagine holding and falling in love with a rosy little cherub, but the reality can be quite different.

Sometimes, it can be traumatic.

Kathlyn Stokes gave birth to little Amelia at just 28 weeks pregnant.

“She was less than two pounds in weight,” Kathlyn recalls. “It was very weird; she was absolutely tiny. Because I had the c-section, I wasn’t allowed to see her. I gave birth at 7.43pm and I wasn’t allowed to go down to see her until 10 o’clock the next morning, which was just horrible.”

Baby Amelia, out of the incubator and into a little bed: a huge development milestone towards getting home. 
Baby Amelia, out of the incubator and into a little bed: a huge development milestone towards getting home. 

Kathlyn and her husband Andrew, who live in Clonmel, found out just two weeks earlier, at a scan, that their first baby wasn’t growing in the womb as she should have been.

To complicate matters furthers, Kathlyn was showing symptoms of pre-eclampsia, the mysterious and potentially deadly maternal illness.

Suddenly Kathlyn, who works as an accountant, was transferred to Cork University Maternity Hospital (CUMH) and placed in intensive care.

“When we were sent to Cork, we weren’t really all that concerned, but then it all started happening very quickly,” she says.

“All of a sudden, I was being booked into the hospital and they were saying I was going to be delivering that day. It was a lot to take in.

Amelia Stokes now. She was born at 28 weeks.
Amelia Stokes now. She was born at 28 weeks.

“One of the doctors just said, ‘Well, you’ll be here until you deliver,’ and I just kept thinking, Bbut I’m not going to deliver for three months, I can’t stay here for three months, I’ve so much to do.’ And then all of a sudden it was, ‘no, you’re going to deliver either today or in the next few days’. That was a complete shock.”

Balancing little Amelia’s wellbeing against Kathlyn’s, the medical team managed to keep the pregnancy going for a further week, during which time they gave Kathlyn drugs to help mature her tiny baby’s lungs. But finally, both mother and baby were deemed safer if Amelia was delivered via c-section.

“The c-section was very scary,” says Kathlyn. “It came to the point where the protein in my urine started to increase and my blood pressure was going up, and then at the end, the flow of oxygen from the umbilical cord had become even more reversed.

“They gave me magnesium to help with Amelia’s brain activity, which made me very very sick, but that only lasted a few minutes and after that I got lots of drugs and everything went well.”

Amelia spent seven weeks in the Neonatal Intensive Care Unit in CUMH, with Kathlyn staying nearby in Brú Columbanus, before being transferred to Clonmel hospital. She finally went home to Kathlyn and Andrew days after the date she had originally been due.

Bonding with a very premature baby was very challenging for Kathlyn.

“I loved her immediately, but I wasn’t even allowed to touch her until she was ten days old,” she says.

“You can’t have that physical connection. You were told not to touch her skin because it’s too fragile.

A collage of the clothing that features in the exhibition. Families have made these for the babies as it's incredibly difficult to source clothes that are small enough for preemie babies.  One mum says as part of the project: "I was pretty much on my own for most of the day, and then I took up knitting again. Thank god I know how to knit! That was my go-to then, to keep my mind occupied...I just started knitting baby clothes, really tiny baby clothes because I didn't know when baby would be born. I was able to concentrate on something, I had kind of purpose, like it gave me something to do and not just sit there doing nothing and waiting... it was just me, my head and the thoughts going around in my head and so the knitting gave me something to do to not feel completely useless."
A collage of the clothing that features in the exhibition. Families have made these for the babies as it's incredibly difficult to source clothes that are small enough for preemie babies.  One mum says as part of the project: "I was pretty much on my own for most of the day, and then I took up knitting again. Thank god I know how to knit! That was my go-to then, to keep my mind occupied...I just started knitting baby clothes, really tiny baby clothes because I didn't know when baby would be born. I was able to concentrate on something, I had kind of purpose, like it gave me something to do and not just sit there doing nothing and waiting... it was just me, my head and the thoughts going around in my head and so the knitting gave me something to do to not feel completely useless."

“She had ten different tubes coming out of her, oxygen, and a feeding tube because she wasn’t able to eat.

“It’s like she was a baby, but a machine at the same time.”

Now, Amelia is a 16-month-old “bulldozer”, Kathlyn says with a proud laugh. “If she wants something, she gets it. She’s stubborn, but full of laughs and giggles. She’s a happy, healthy baby who’s driving us nuts and filling our lives with joy.

“She’s very slightly small, and her development is closer to that of a baby born on her due date, but that should correct by the time she’s two.”

Kathlyn says the trauma of Amelia’s start in life took a long time to process: months after Amelia finally came home, she was watching a TV show with a storyline about a premature baby when the truth hit her.

“I just broke down. Then it hit me, that she could have died. That she was so weak, and we could have lost her. While you’re going through the traumatic bits, you just cope. It’s after the fact. You just kind of go through the motions to go through it.”

For Elaine and Rob Ewing, from Glanmire, it was double trouble when Elaine’s pregnancy with twins developed complications.

Already a mum to James, who was a toddler at the time of her second pregnancy, Elaine discovered she was expecting twins Carolyn and Saoirse at just nine weeks pregnant. But at 28 weeks, a Doppler scan brought news that one of the foetuses wasn’t developing as she should.

Another photograph in the exhibition, is of one of the micro nappies. These nappies must also be specially bought, and they are three sizes smaller than regular newborn nappies. One mum said: "I thought: oh my God they are so TINY. How are these going to on somebody?"
Another photograph in the exhibition, is of one of the micro nappies. These nappies must also be specially bought, and they are three sizes smaller than regular newborn nappies. One mum said: "I thought: oh my God they are so TINY. How are these going to on somebody?"

“We discovered that Carolyn, who was called Twin 1 at that stage, had a problem with her umbilical cord and wasn’t growing at the rate she should be growing,” Elaine says.

While Saoirse was developing normally, Carolyn was at risk. But for Elaine, choosing between her twins’ lives was never an option.

“I remember ringing a relative and being really upset. She said, ‘Look Elaine, you have two babies and one of them is healthy, and I know it’s awful, but you’ll have one healthy baby’, I know she was trying to see the positive in a negative situation, but it wasn’t something I could consider. They were both my babies. I couldn’t bear to think about it.”

For Elaine, being separate from her toddler, James, and the fact that Rob had to stay home to care for him meant that her time in hospital was isolating, despite her excellent midwives.

“The midwives were spectacular women,” she says. “I can’t say enough about how amazing they are. I was very upset about leaving James and one midwife said to me, ‘We used to ask my dad, who do you love the most? And he used to say, whoever needs it the most. Your babies need it the most now.’ That was really great to hear.”

Elaine also found the C-section delivery of her twins at 35 weeks traumatic; a self-confessed “control freak” who had a vaginal birth with her first baby, she recalls the experience of the C-section as a time of vulnerability.

 Saoirse (left) and Carolyn (right) Ewing, their mum had a complicated pregnancy. They were born at 35 weeks.
 Saoirse (left) and Carolyn (right) Ewing, their mum had a complicated pregnancy. They were born at 35 weeks.

But her twins were born healthy and are now eight months old.

“Those weeks were tough, but my girls were tough too, and we got there,” Elaine says with palpable emotion in her voice.

Elaine and Kathlyn, and photographs they took of their time in CUMH, are amongst eight families’ moving experiences of high-risk pregnancy shared in an exhibition, Developing A Picture of Us, based on research undertaken at Cork University Maternity Hospital with the support of the Health Research Board and Cork Science Festival.

Researchers Sarah Meaney and Sara Leitao, from the CUMH-based National Perinatal Epidemiology Centre, interviewed women and their partners about their experience of hospital care, and the mums documented their hospital stay with photos taken on their mobile phones.

Their goal is to help improve the hospital experience for families undergoing the trauma of high-risk pregnancies and deliveries.

“Women spoke about the difficulty of the hospital environment and the difficulty of going home after something like a C-section,” Sarah Meaney says.

“A lot felt there was a loss of autonomy and decision-making in this very difficult time.

Another image from the exhibition.  Many babies are too small and sick to feed through their mouths, and one mum captured a photo of the baby's first oral feed: a milestone for her development. She had one syringe (3-5mls) of milk.
Another image from the exhibition.  Many babies are too small and sick to feed through their mouths, and one mum captured a photo of the baby's first oral feed: a milestone for her development. She had one syringe (3-5mls) of milk.

“We worked with women whose babies had a diagnosis of Intra Uterine Growth Restriction (IUGR). When the babies are that small, they’ll be scanned a lot more frequently and will be moved to the high-risk clinic because we’d worry that they’d deliver early, and there’s a risk of still-birth as well.

“It’s a difficult diagnosis to get. Women are still pregnant, but no-one knows what’s going on inside. They’re pregnant, but they’re living with this huge worry.”

When a woman has a high-risk pregnancy, doctors need to focus on the physical safety of both mother and baby, but in recent years, there’s a growing awareness of the importance of a more holistic approach to maternal — and paternal — wellbeing, Sara Leitao says.

“It’s very positive to see so much research focusing on the wellbeing of mothers and starting to look at the wellbeing of fathers too,” Sara says.

“There’s definitely an awareness of the need to look beyond physical wellbeing now, as something that matters for the mother, but also as something that has an impact on the baby.”

Developing A Picture Of Us is running until November 22 in Cork City Library as part of Cork Science Festival.

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