Isobel Reynolds was born with two holes in her heart and a faulty valve
The parents of a five-year-old County Antrim girl who had heart surgery cancelled several times within a few weeks have praised a Dublin hospital for saving her life.
In the past decade, 1,200 children from Northern Ireland have crossed the border for heart surgery.
Isobel Reynolds from Glengormley had her operation at the all-Ireland children’s heart centre in Crumlin in April.
Her parents say while the cancellations were “soul-destroying”, they are grateful they did not have to travel to England.
After Isobel was diagnosed she had surgeries cancelled five times
Children’s Health Ireland (CHI) said there was no database to show “the list of patients that have been cancelled or postponed and how many times” but that surgeries may be cancelled or deferred because of several factors.
An all-Ireland children’s heart centre was established in County Dublin in 2014, cutting potential journeys from Northern Ireland to English hospitals by almost 90%.
Edwin Poots, who was health minister at the time the centre was established, told BBC News NI that while centralising children’s heart surgery in Dublin was not necessarily a popular decision, it was an blueprint for how surgeries should be prioritised in hospitals within Northern Ireland.
Isobel had heart surgery after investigations into a heart murmur a year ago showed she had two holes in her heart and a faulty valve.
She was put on a waiting list in July 2023 but her dad Paul said surgery was “cancelled five times”.
Isobel’s parents Paul and Gemma said her numerous surgery cancellations were hard to deal with
“It was horrendous.
“You build yourself up, you build Isobel up to go down, psych yourself up for this major surgery that is going to happen to your child and last minute it’s cancelled and then you have to go home and try to get back to normal.
“But you can’t get back to normal because you’re constantly waiting,” said Paul.
Her mum Gemma said this was “very stressful and upsetting”.
“The cancellations were quite hard to deal with and then the disruption in our family life as well,” she said.
Isobel finally had her surgery on 22 April 2023.
Her parents were full of praise for the staff in CHI in Crumlin and in the Royal Belfast Hospital for Sick Children where she also spent time, who Gemma said were “more than amazing, they were fantastic”.
According to CHI, the average waiting time for children’s heart surgery is five months.
Among the factors for cancellations or postponement are:
- Bed capacity – a lack of children’s ICU beds available post-operatively
- Medical emergencies from other hospitals or in-house
- Admissions from maternity hospitals
- The patient being medically unfit for surgery following pre-op assessment
- Parents of patients cancelling as the patient is unwell
Isobel’s dad says the “benefits outweigh the difficulties” of travelling to Dublin
Paul said he “can see the sense” of having an all-Ireland service but said it was “stressful” travelling to and from Dublin.
“It would have been great if it had been in the Royal in Belfast, but I understand that they’re not doing enough surgery up here to warrant it and I would rather go down to Dublin than have to fly over to England and be cancelled and having to come back again.
“There are difficulties, but the benefits outweigh the difficulties that we’ve had,” he said.
Isobel’s mum says the surgery has left her like “a different child”
The Reynolds say Isobel is doing really well after surgery.
“The stress of the cancellations all just paled into insignificance after the surgery,” said Paul.
“She’s a lively wee girl now, but she was pretty sick up until she had her surgery.
“She was tired all the time, and she would have slept a lot after nursery, but she’s doing great now,” he said.
“She’s a different child.
“Her speech was delayed before surgery but as soon as she had her surgery, she started saying words.”
Gemma said before the operation, Isobel would have got tired easily.
“You can’t get her out of the park now. You bring her to soft play now and she climbs, and she does everything a little five-year-old girl does. It’s definitely been a big change.”
About 2,000 children from Northern Ireland have had heart surgery since 2013.
Around two-thirds of them have received their surgery in Dublin since the all-Ireland facility was established in 2014.
At that time, only 4.5% of all children’s heart surgeries took place in Dublin, with 95.5% of them travelling to England.
By 2017, it was about 50% each.
In 2023, the number of children travelling to Dublin from Northern Ireland had increased to 92%.
While all patients born on the island of Ireland should now have their cardiac surgery completed in CHI, Belfast Trust said “there remains a cohort of children who continue to receive treatment in GB”.
These include children who require heart transplants or those who had their initial surgery at a hospital in England and wish to continue their care there.
Former Health Minister Edwin Poots faced criticism from unionists when the all-Ireland children’s heart centre was established
ormer health minister Edwin Poots said politicians “have to make big decisions”.
“When I was in health, we had the decision about congenital cardiac surgery treatment for children on the back of the surgeon who was doing it retiring,” he told BBC News NI.
Mr Poots said he was criticised by some within unionism at the time and others who saw a service being taken away from Belfast.
“We further enhanced the cardiology service in support of those children in Belfast and it is just the actual surgical procedures that don’t take [place] here,” he said.
“It was no longer sustainable.
“That application is also an application for hospitals within Northern Ireland.”
Mr Poots who has had a number of recent operations himself added: “I don’t really care where it happens.
“I care as to the competence of the people that are doing it and of the team that’s doing it.”