Elaine Ní Bhraonáin and her husband, Dean Gravenstein, prepared themselves several times for the death of their premature baby son Odhrán, even discussing where they would bury him.

Although he weighed a remarkable 1.56kg (3lbs 7oz) for a birth at 30 weeks, he had severe respiratory problems. He was put in an induced coma at University Hospital Waterford, on the highest form of ventilation, “and they prepared us for the worst. It was literally hour by hour,” she says.

Odhrán spent 50 days in intensive care, followed by special care, and wasn’t discharged until his due date, October 15th, 2015. That was more than three months after Elaine (37) had been admitted to hospital with bleeding, which turned out to be placenta previa, at 26 weeks.

Now, just over a year later, the little boy is “flying it” at home in Gorey, Co Wexford, along with his two-year-old brother Tristan. However, Elaine feels she is still processing the trauma.

“Because he survived you don’t just say ‘ah that’s grand’,” she says, even though she feels like she won the lottery because he did.

Determined to give back, she has joined the board of the Irish Neonatal Health Alliance (INHA) as a parental representative, liaising between parent groups and health experts in a multidisciplinary collaboration.

Family-centred care is something that the INHA is trying to push in Ireland at the moment, she explains, and it is the theme of a symposium it is hosting in Dublin on November 11th.

“There are better outcomes for family-centred care,” says Elaine. “At the end of the day, hopefully, you will get this baby to bring home and you will want to have learned what to do when the baby goes limp, or whatever.”

As parents, she remembers how they would step aside when doctors approached in the neonatal unit, as Odhrán was the patient and they felt they were in the way. But the staff “were very good at including us, that we were like joint patients going through this”.

However, she remembers how scary it was when the time came to take their son home. She felt they too had to be “weaned off” the machines, which had been keeping Odhrán alive for so long.

Because he was so vulnerable to infection, they were not allowed to take him out in public for another six months, she explains. And they kept all children under 10 away from the house – even big brother Tristan wasn’t allowed to socialise with other children, for fear he would bring germs in.

“We were like lunatics,” says Elaine.”People didn’t understand.”

That’s one of her motivations for being involved with the INHA, raising awareness and fostering links between parents, as well as enabling health professionals to be educated on the latest developments in treatment of premature babies.

Meanwhile, it was personal experience with his premature daughter Hollie nearly a year ago that prompted Dion Tallant to volunteer for Irish Premature Babies. The charity supports parents, distributes information leaflets through the maternity hospitals and rents out hospital-grade breast pumps at a subsidised rate of €40 a month, compared with the commercial rate of €109.

There is a lack of support both in the hospitals and in the wider community for parents of pre-term babies, he says. “There is not enough recognition of what they do and what they need.”

For parents living outside Dublin, whose children are transferred to neonatal units in the capital, and then perhaps to either of the two children’s hospitals, “there is a huge strain on finances of the family”. The charity receives a €10,000 grant from the HSE but does fundraising for neonatal equipment, as well as breast pumps.

"Family-centred care" is the topic of a medical symposium being hosted by the Irish Neonatal Health Alliance, supported by AbbVie, at the Davenport Hotel, Dublin on November 11th. See inha.ie for more information and support; also, irishprematurebabies.com