Today is World Prematurity Day, a day which aims to raise awareness of preterm births. These are births that occur at less than 37 weeks and there are 4,500 of them in Ireland every year.
The image that comes to mind when you think of a preterm baby is of a tiny mite in an incubator attached by wires to beeping monitors. But where are the parents in this picture? What role do they play in caring for their child?
“These babies are often unstable when they are born,” says Dr John F Murphy, the clinical lead for neonatology at the National Maternity Hospital in Dublin. “They’re cold. They have breathing and feeding problems. They should be handled as little as possible. Often all that parents can do at this point is to stroke their baby’s hand or foot.”
Elaine Ní Bhraonáin and her husband Dean Gravenstein’s second son Oran was born at 30 weeks in August 2015. “He was so sick we weren’t allowed to hold him for the first two weeks,” says the 38-year-old from Gorey, Co Wexford. “There were some days when weren’t even allowed to open the door of his incubator.”
Regina Kelly and her husband Brian had identical twin boys who were born at 34 weeks in March 2013. They were seriously ill at birth.
“We saw Tadhg for a few seconds after he was born but we didn’t see Liam. I didn’t see them for all of that day or night,” says Kelly, 38, from Dublin Hill, Cork.
A week passed before she could touch them properly. “Even then, I was only able to touch their arm or leg for seconds at a time.”
Prof Eugene Dempsey, consultant neonatologist at Cork University Maternity Hospital, believes parents need to be involved in caring for their preterm babies as much as possible.
“As soon as babies are stabilised, parents should touch them,” he says. “Even the slightest touch encourages bonding.”
At CUMH, staff follow newborn individualised care assessment programmes. “This approach is based on research showing that preterm babies have a better long-term prognosis if we include parents in their care from the very beginning,” says Dempsey.
It starts with dad walking the baby up to the NICU while mum recovers from the birth. It involves teaching parents how to feed the baby through a tube. “It also involves listening to parents and addressing their concerns,” says Dempsey. “As their baby grows and develops, the monitors will eventually stop and they will go home to care for the baby on their own. They need to be prepared for that.”
The first hurdle is holding the babies for the first time.
Ní Bhraonáin remembers feeling terrified. “I was afraid to move in case I pulled out a wire,” she says. “I was like a nervous first-time mum multiplied by 100.”
Pumping breastmilk is another challenge. “It was exhausting doing it for two but it was all I could do for them at that stage,” says Kelly. “I felt so guilty leaving them in someone else’s care so this was my way of looking after them.”
As the babies become stronger, parents are given more responsibility. “As the weeks go by, the nurses oversee the parents as they do more and more of the caring,” says Dempsey.
Even so, many parents are still frightened by the idea of going home.
“After 50 days in the NICU and three weeks in the special care unit, Oran might have been ready to go home but I wasn’t,” says Ní Bhraonáin. “How would I manage without the monitors?”
Many hospitals have facilities to alleviate these worries. “We have care-by-parent rooms for parents and babies,” says Dempsey. “There are no monitors or nurses but you are still in the hospital. It’s reassuring for some parents.”
Hospitals also have neonatal discharge nurses.
“Parents are understandably worried about bringing their babies home,” says Murphy. “How will they keep them warm? Will they feed properly? Our nurses prepare them for all of this.”
This approach benefits babies enormously. “In the past, babies were often readmitted because they weren’t feeding,” says Murphy. “This doesn’t happen so much now because parents are better informed.”
Attention is also paid to the parents’ psychological state. Both mums agree that giving birth prematurely can be traumatic.
“I don’t know if I’ll ever recover from it,” says Kelly. “I feel like I missed out on the first couple of months with them because I didn’t know what was going on half the time.”
“I wouldn’t even call Oran by his name at the beginning because I didn’t want to get attached,” says Ní Bhraonáin. “I thought he was probably going to die. Even now, more than two years later, I still go in and wake him to check he is alive.”
CUMH has a clinical psychologist to help parents overcome these problems. “We’re the first in the British Isles to do this,” says Dempsey. “The idea is to monitor parental wellness and try to reduce stress.
“A guilty, sad or depressed parent will not be able to care as well for an infant in those vital first few years of life.”
These babies certainly require a lot of ongoing care. Liam and Tadhg are four and a half now. “We thought Liam would never walk or talk but he’s a great little fella,” says Kelly. “Both the boys have epilepsy and learning difficulties and will probably need special education in the future. But for now, they are attending mainstream preschool and all is going well. They’re little miracles really.”
Meanwhile, two-year-old Oran is small for his age and has a slight murmur in his heart.
“But he’s hit all the milestones so far,” says Ní Bhraonáin. “We have to keep more of an eye on him.”
It’s this ongoing care that means parents of preterm babies require support in the long term, according to Murphy.
“They need a safety net and somewhere to turn if they have a problem,” he says. “They shouldn’t have to cope on their own.”