‘Our children have been cast aside for too long, we are going to fight for their rights until the Government listens’

Outraged parents of children with spina bifida who are losing the ability to walk while on “abhorrent waiting lists” have made a desperate plea to the Minister for Health for immediate action.

A nationwide group of 82 parents is now calling for reform of care after the devastating presentations to the Oireachtas health committee earlier this month on children’s spinal health.

The “Paediatric Advocacy Group for children with spina bifidia and hydrocephalus” have written to Minister for Health Stephen Donnelly calling for adequate care for children with the conditions.

The movement was sparked by Consultant paediatric orthopaedic surgeon Connor Green address to the Dail where he said that many children’s futures are being “destroyed” physically and psychologically by inadequate access to care.

Mr Green, who carries out scoliosis surgery in Cappagh and Temple Street hospitals, made a passionate plea earlier this month to overhaul the system at the Oireachtas Health Committee, rejecting claims by the HSE, which blamed excessive waiting lists on the pandemic and cyberattack.

There are currently 43,844 children on the outpatient waiting list.

Garreth Fitzpatrick's seven-year-old son Connor from Mornington has been waiting for surgery since 2018 but has seen it cancelled a number of times resulting in a rapid deterioration of his condition and leaving the youngster wheelchair bound.

“Connor has been waiting for correction surgery since 2018, up until very recently he has gone from cycling a bike and playing with his friends to now having open pressure sores and spending most of his time in a wheelchair,” he said.

“He sits at the window looking out at his friend's playing on a green that he used to play on and is now being wheeled out by his brother to have to sit watching them is absolutely heartbreaking.

“We can even see that it's starting to take its toll on him. The last time his surgery was cancelled, we had to tell him and he broke down.

“When you have a child in the house with a disability it has an effect on the whole family, everyone has to suffer the consequences and watch their child or sibling deteriorate before their eyes.

“These are the children of the future of this country, many of these children will go on to make very significant contributions to society and they are being very badly treated.”

Historically children with spina bifida have been treated “appallingly” by the State according to Garreth who said:

“In 2014 Temple Street published a report saying care for children with spina bifida was grossly underfunded, understaffed and a failing to children like Connor. Since that there has been little or no progress on this. Their limbs are becoming deformed, maimed and disfigured. We have been told by different consultants that if Connor's condition was to deteriorate over a period of time we could be talking about amputating his foot.

“I just want Connor and other children like Connor to be able to live to their capabilities, not to be in pain and to have an actual childhood, I don' think that is too much to ask?”

The passionate dad said the group of parents would continue to fight for as long as necessary. He added:

“This country has failed children repeatedly in the past and we as a group are not going to stand by and allow people like Connor deteriorate when you have doctors and surgeons like Connor Greene willing to do the surgery.

“The deformities that Connor has will never be reversed properly because they have gone too far, all we can do is try to stabilise his problems going forward, we can't go back and undo the lack of care that he has got over the last few years.”

“We are going nowhere, we are going to stay united as a group to ensure that all children with disabilities get early intervention.”

Five-year-old Abbie Rose O’Hehir who was born in 2015 with spina bifida and hydrocephalus has been on a waiting list for hip, knee and foot correction surgery for over two years.

The little girl who in just one year underwent nine major surgeries to have a shunt inserted to drain fluid from the brain along with a procedure to close her spine at just one-day old is described as a “warrior” by proud mum Denise O’Hehir who is part of the group who have come together to highlight the long waiting lists for intervention for children with the condition.

“We have been fobbed off for so long and we have had enough,” she said.

“Dr Green outlined a plan that would increase capacity for surgeries by 400 percent costing just €5.1M. He has done the work for Stephen Donnelly and Paul Reid, they just have to give him the green light.

“Abbie Rose got her new splints recently but her foot wasn't sitting right in them because her foot has turned in so badly that the splint is actually not fully correcting it.

“It is just heartbreaking and even though Abbie Rose is only six, she is fully aware of her condition and asks why her foot is getting worse.

“Our children have been cast aside for too long, we are going to fight for their rights until the government listens.”