A new booklet has been launched to help parents of premature babies ahead of World Prematurity Day. Each year over 4,500 Irish babies and 1 in 10 babies globally are born prematurely.
The Irish Neonatal Health Alliance (INHA) was today joined by children who were born prematurely and their families to mark the 9th annual World Prematurity Day, which aims to shine a spotlight on the challenges these special ‘early deliveries’ face.
RTÉ Science and Technology correspondent Will Goodbody, whose son was born prematurely at 34 weeks, opened the medical symposium, which was held in the Alexander Hotel, Dublin.
The new educational guide, Next Steps… The Journey Home, aims to empower parents of premature babies in making the transition from hospital to home easier and to improve long-term outcomes for premature babies.
Elaine Ni Bhraonain, a board member with the INHA, told how difficult it was when she was in hospital with her son Odhran.
"We were asked do we have a family plot to bury Odhran because it was looking likely that he was going to die. Then a couple of hours later, thankfully, he started to improve and then after about a month he was out of the woods," Ms Ni Bhraonain said.
When she was able to bring Odhran home three months after he was born, it was not the celebration that people expected it to be.
"People thought it would be the best day of my life but it was probably one of the worst days of my life," she explained.
"When your baby is in intensive care there are lots of machines telling you that your baby is ok and then you’re at home sitting in the sitting room wondering ’is my baby ok?’, ’has my baby been asleep too long?’.
"Obviously every first-time mum is nervous but you could have your fifth child and it can be a premature baby and you bring that baby home and it’s absolutely heartbreaking."
Ms Ni Bhraonain said that the new guide would offer support to parents trying to navigate bringing their premature baby home.
"Often you’re not even allowed to touch your baby because the babies are too ill and too fragile to touch," she said.
"So we just have these booklets called Next Steps… the Journey Home which we’re launching today to educate parents, to make that transition from hospital to home easier and to make it not as daunting.
"And to let people know that it’s ok to call up your Neonatal Intensive Care Unit every hour if you need to if you have concerns."
Neonatal experts are working towards a unified process for treating premature babies.
Dr John Murphy, Clinical Lead for Neonatology at the National Maternity Hospital says they have been developing a framework for these babies and their families.
"When the movement started about a decade ago, it became clear to us that we treated these babies but we hadn’t really planned the way we should," Dr Murphy said.
"And I began to realise that if you’re going to improve something you’ve got to plan it. If you want to improve a health service you’ve got to plan it out properly.
"That’s what we really started with. We began to stratify our units into tertiary units and local units and regional units. And particularly what we did was we set up a 24-hour transport unit."
Dr Murphy explains what it’s like for parents who give birth to a premature baby.
"It’s a shock. I think there is a sense of disbelief when they were waiting to go full-time and labour starts at 27-28 weeks," Dr Murphy explained.
"It’s a shock and then they find themselves in a situation that they never expected to find themselves in.
"Many of the mums and dads say they never knew there was a premature baby unit, we never knew the size of the unit, we never knew there were so many doctors and nurses working on premature babies. We thought we were facing this problem ourselves."
For more information about World Prematurity Day, the Discharge Planning Process and to download the ‘Next Steps…The Journey Home’, please visit INHA.ie.