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"It can be hard to cope" - Ireland wants parents of premature babies to get heavily involved in their care

A new guide for parents of pre-term children is to be launched today in Dublin.

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A NEW GUIDE being launched today attempts to best advise parents as to how to cope with having a baby born prematurely.

Of all the unforeseen events that can befall a pregnancy, prematurity is one of those least discussed. Yet, worldwide, one in 10 babies will be born prematurely. More than 4,500 premature babies are born in Ireland each year.

Better Together: A Family-Centred Care Guide for your Premature Baby will be officially launched today by Health Minister Simon Harris at a medical symposium at the Davenport Hotel in Dublin. That symposium has been put in place to celebrate the 8th annual World Prematurity Day.

It has been drafted by the Irish Neonatal Health Alliance (INHA) to help parents in such a situation “to take a more active role in the neonatal situation” during their baby’s time in hospital.

“Some women will know nothing of premature babies, some will know too much perhaps, it’s about striking a balance but this is a way of encouraging empowerment for parents who may have felt helpless, and it can only help their baby,” says Professor Afif El Khuffash, consultant neonatologist at the Rotunda Hospital in Dublin.

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Prematurity: the facts

Some things you may not know about premature births:

  • Any baby born before 37 weeks (39 weeks being the ‘normal’ period) is considered premature (known as Extreme Low Gestational Age Newborns, ELGANs, to the professionals). The more premature the baby, the lower its survival rate, with most born before 23 weeks not expected to survive
  • Premature babies require a huge amount of intensive care during their first weeks, including assistance in breathing and feeding, while they are very susceptible to developing infections and having low blood counts
  • A baby born at 24 weeks (six months) has a 70% chance of survival
  • A baby born at 24 weeks may weigh as little as 450 grams (less than one pound)
  • Administration of breast milk is especially important in cases of  premature births

The new guide is aiming to bring parents more into the fold when it comes to their baby’s initial care. This will involve participating in medical rounds, providing breast milk, just observing a baby’s movements, comfort holding, skin-to-skin care, nappy changing, even tube feeding.

“We want these parents to be their child’s primary carers, that is what’s best for the baby. We provide the medical care, but we can’t do what a parent does,” says Professor El Khuffash

“It’s hard to cope”

24-year-old Laura Boylan from Rockcorry, Co Monaghan, is a young mother who went through the mill with her own premature baby last year.

“I had a mini haemorrhage at 29 weeks and was hospitalised for a time, then on 21 October 2015 my waters broke. I was 33 weeks, James wasn’t due until 9 December,” she says.

I just about made it to the hospital (Cavan General)! He was born within two hours at 5 lbs 9 oz.

Baby James, Laura’s second child, was jaundiced and on oxygen for several hours. Aside from that he presented with few problems, but that didn’t make the experience any easier.

“I’ve developed anxiety from having a premature baby, having the first haemorrhage was such a shock, it’s very hard to cope,” says Laura. “You need to actively try to relax if you’re in this situation, take each day as it comes because every day could be different.”

laura Laura Boylan and baby James on his Christening day

It had been mentioned to me that James might come early after the haemorrhage. But that doesn’t prepare you for it, nothing can.
Definitely don’t keep things bottled up, particularly if you have other children already.

In total, James Owen spent four weeks in hospital in a Special Care Unit. Within hours of the birth Laura was required to provide breast milk for his carers to be administered to James. She understands the importance of spending as much time with your premature baby as possible.

“Oh definitely. They need skin-to-skin contact, which can be hard because when they’re taken away from you after birth at first they don’t feel like your baby. But it helps them to grow,” she says.

It stops them from being unsettled. They’re your baby, and they don’t know what’s going on and what’s happening to them.

‘Kangaroo’ care

“We want the parents as involved as possible,” says El Khuffash. “We call it kangaroo care, when a baby is held to the parents’ skin under a jumper or whichever after birth. We now know that it stabilises them.”

Even at a time when a parent can not provide the medical care necessary, it’s important that they are involved.

He says that Irish hospitals are now moving “more and more towards what we call family-integrated care”.

“Some hospitals are taking this to the next step, empowering parents as primary carers, having them feed their baby through a tube, or recording the vitals of their baby, under supervision of course, their heart rate, that kind of thing,” he says.

Balance is needed, we don’t want to raise unfounded concerns. But anyone can undergo a pre-term birth, especially those with a family history of such births.
Everyone needs to be a little more informed. Everyone should be aware of what can happen.

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