The pressure and joys of caring for premature babies
Survival rates have greatly improved, but ‘we are long way from being home and hosed’
When Verity Fleming unexpectedly arrived into the world last month she weighed less than 800g – or 1lb 12oz to use the scale still used by most Irish people when talking about newborn babies.
“She’s 2lb 11oz today,” her father, Dave, says with pride as he watches his child sleeping peacefully in her mother’s arms in the neonatal intensive care unit at the National Maternity Hospital (NMH) on Dublin’s Holles Street.
“2lb 12,” the child’s mother Anne Marie corrects him.
Every ounce matters here. And every hour matters, too. Verity was born at just 25 weeks – arriving 15 weeks early because her mother had been diagnosed with a potentially life-threatening internal bleed.
Since then, she has spent six weeks in an incubator in the neonatal unit in Holles Street, which cares for acutely-ill and preterm babies from across Ireland. She will be there for at least 10 more weeks.
While her early arrival put the Wexford couple, with four young children at home, on an emotional rollercoaster, they are full of smiles. Verity is still with them. Given the circumstances that is little short of miraculous. “She is doing great,” Dave says, “It’s unbelievable, really.”
Dr Colm O’Donnell, a consultant neonatologist at both the NMH and Our Lady’s Children’s Hospital in Crumlin, is one of those charged with making the unbelievable happen.
Dramatic changes“Things have has changed dramatically over the last 30 or 40 years,” he says simply, as he completes his morning rounds.
In the 1980s, babies born any earlier than 28 weeks were classified as stillbirths because their survival chances were so low. Today a baby born at 28 weeks has a 90 per cent chance, while babies born at 24 weeks have a 50/50 chance .
“It has been one of the big leaps forward,” Dr O’Donnell says, “but we are still a long way from being home and hosed. As more premature babies survive, more have long-term problems and we have really focused on learning more about that and how we can improve outcomes.”
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Early birth brings uncertainty, he says. “Humans like neat answers, but life isn’t really like that. People want black and white, but it is shades of grey. We try our best but we are not as good as we would like to be at predicting the future.”
However, he goes on: “For every one of those babies that don’t have the easiest time, there’s loads skating out the door, absolutely fine, never looking over their shoulder. The vast majority of outcomes are positive.”
Passing the high-dependency unit, where 10 babies are being cared for, he notes how quiet things are today. A baby boy basks under UV light, being treated for jaundice.
In a nearby incubator lies Frankie, a triplet born in Galway in September. His two brothers – who like him were just two pounds when born – are doing well in a Galway hospital, but Frankie needs intensive care for an infection.
His parents Fran and Siobhán Madden watch over him. “There was nothing to suggest [the triplets] were on the way and no trouble with the pregnancy or anything like that,” Fran says.
Holding upDespite stressful days, the couple are holding up. “You just need to do what you need to do in situations like this,” he says. “I don’t find it hard, it just has to be done. It’s certainly a lot easier for me then it is for Siobhán.”
His thoughts turn to the “two lads in Galway”. They are, he says, “doing great, they’re in cots and on bottles and everything. But it was two weeks before I got to hold them. That was tough.”
Peering into his son’s incubator, he says: “This little fella has had a few setbacks but he is very strong. We have learned that you take things hour by hour and day by day. I can’t wait till all three of them are together, until all five of us are together, and we can pose for our first family picture, something normal like that.”
Little is normal now. The couple have spent weeks commuting. Fran has slept in his car three times. However, discomforts do not matter; he cares only about his boys. Though still early days , things are looking good.
Twenty years ago, says Dr Rhona O’Mahony, the master of the NMH, the triplets’ future would have been very different. “But babies being born prematurely is still one of the biggest challenges we have in obstetrics.
“It is also a huge challenge for parents. You can imagine a baby born here at 25 weeks, weighing 500 grams: that baby will need so much support with breathing, feeding and infection and their parents will spend weeks on the unit.”
The hidden costs are never noticed, particularly for families living outside of Dublin – accommodation, parking, food and transport – while keeping on top of everything at home, too .
MRI scannerThe NMH Foundation, set up in 2012, tries to help. In September, it funded a €1.7 million MRI scanner that will dramatically cut the time intensive care medical staff spend transferring babies to Temple Street or Crumlin.
Instead, it will allow more scans of pregnant women to better diagnose and then treat conditions that could threaten their lives. The scanner was the foundation’s big goal, but not its only one.
Now it is raising funds to help parents directly. Recently, it secured five parking passes close to the hospital. That may seem a small deal but parking can cost nearly €40 daily. A 15-week hospital stay could cost €4,000 in parking bills.
Hospital social workers, Aoife Shannon and Ciara McKenna, help. “To be fair, council clampers at least listen to reason sometimes, but there is absolutely no talking to the private clampers, they are just terrible,” McKenna says.
The social workers have developed ties with local hotels, but as McKenna points out ,“the neonatal unit and parents are competing with Google and Facebook for hotel beds. We just can’t pay the premiums big multinationals can.
“Having a premature baby puts huge pressure on you, no matter who you are, says Shannon, “But never underestimate how resilient and how resourceful parents are – no matter is what is thrown at them.”