Parents of a premature babies face an ‘emotional roller coaster’

There is a huge emotional, physical and financial burden on families of premature babies, a consultant neonatologist at the Rotunda Hospital has said.

Prof Afif El-Khuffash said families go through an “emotional roller coaster” when their baby is in the neonatal intensive care unit following birth.

"Another stage of anxiety is actually when the families get to take the baby home," he told The Irish Times.

“We are more and more emphasising the role of the parent while the baby is in the neonatal intensive care unit, where they become active participants in their care from early on . . . so that when they actually go home they’re ready for caring for the baby.”

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The Rotunda Foundation hosted a party on Thursday to celebrate premature babies born at the hospital in 2016, to mark World Prematurity Day.

The hospital’s 2017 annual clinical report said the survival rate of babies born premature at 28 weeks or later was 100 per cent.

About 4,500 babies are born prematurely in Ireland every year. In babies born preterm, the chance of survival at less than 22 weeks is close to zero. This rises to 19 per cent at 23 weeks, 40 per cent at 24 weeks, 66 per cent at 25 weeks and 77 per cent at 26 weeks.

The percentage of premature deliveries has increased from 5.1 per cent of all deliveries in 2012 to 5.5 per cent of all deliveries in 2015.

“The increase is to do with the health of the society and I think mothers are having babies slightly later and that increases the risk of having a premature baby,” Prof El-Khuffash said.

“We have a society that has more and more long-term illnesses and that contributes to early premature birth also.”

Prof El-Khuffash said being born prematurely has both short and long-term impacts for babies.

“Babies that are born at the most extreme prematurity age, around 23 to 24 weeks gestation . . . they need a lot of support in terms of their breathing, they need to be artificially fed, we need to support their heart, we need to support nearly all their organs over the early period,” he said.

“We’re actually realising more and more that babies born premature can have problems with their cardiovascular health when they become teenagers and young adults.”

Cheryl Flaherty gave birth to her daughter Ryleigh (now aged two) in January 2016, at 26 weeks gestation.

“It was tough, there’s no other way to explain it. I had to take things day by day with her and that was it,” she said.

“There had been no problems during the pregnancy, nothing at all, so it was a huge surprise, especially on your first, like not knowing what to expect and then to be thrown that in the mix.”

Ms Flaherty said her daughter’s speech is a little delayed but “other than that everything seems to be good”.

“We still attend physiotherapy, occupational therapy, speech and language, we’re still with her paediatrician and kidney doctor. We still have a lot of appointments at this stage.”