New figures show there are up to 56 children with spina bifida waiting for corrective surgery.
An advocacy group for the children has called on the Government to provide the resources needed to carry out the operations.
The Spina Bifida Paediatric Advocacy Group has said that some children are now inoperable because they have waited so long for surgery.
Ava Cahill, 11, from Tallaght in Dublin, who has spina bifida, has been waiting over a year and a half for corrective surgery which would help to correct her feet which are turned in as a result of her condition.
She said she finds everyday tasks very difficult. "It's hard to put on my shoes and every time I get myself dressed my feet get stuck in my trousers and I have to ask my mam for help.
"It's very stressful. I can only wear fabric trousers because they are the only ones I can get on. Unicorn leggings are too hard to get on."
Ava's mother Suzanne Cahill said her daughter's feet are getting worse by the day and it the splint, which is used to keep her feet in a normal position, is harder to put on.
New figures show there are up to 56 children with spina bifida waiting for corrective surgery. An advocacy group for the children has called on the Government to provide the resources needed to carry out the operations. | Read: https://t.co/13fLgjGzVl pic.twitter.com/f0jdB3ATYj
— RTÉ News (@rtenews) January 30, 2022
She said Ava needs the surgery as soon as possible and she is worried her condition will end up inoperable.
"She should have had it done as soon as she needed it.
"Now she is at that age where she is aware of her body and doesn't want to be taking off her shoes and people seeing her feet.
"It's heartbreaking for me as her mother to tell her I don't know when this is going to happen for her."
Suzanne also revealed that Ava developed friction burns on her feet and was unable to wear her splints.
"She was admitted to hospital because her feet got so bad I couldn't put her splints on."
In a statement, Children's Health Ireland said there are 649 children waiting for scheduled or elective orthopaedic surgery.
Up to 56 children with spina bifida have been waiting between one to four years for orthopaedic surgery.
The statement acknowledged that children were waiting too long and apologised to children waiting for care.
Úna Keightley, co-lead with the Spina Bifida Paediatric Advocacy Group, said the resources need to be made available to ensure these children get the surgery they need.
She said: "They are having open sores and wounds. They are having skin breakdown and infection. There is extreme mental distress to their families and to the children themselves and some of them have actually become inoperable."
At an Oireachtas Committee in November, a leading orthopaedic surgeon said the waiting time for surgery is having a detrimental effect on children.
Connor Green described the care of children in need of orthopaedic surgery as inadequate.
He said children with spina bifida have gone from walking independently to wheelchairs with no date for surgery.
Meanwhile, Ava Cahill said she is desperate to get her feet back to a healthy position with corrective surgery.
"It would make my feet straight and I can tell everybody that my feet are normal. I would be able to crawl up the stairs better and it would stop my foot from getting stuck."
