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Dozens of children with spina bifida are still waiting years for surgery


Waiting lists are mounting at Temple Street Children's Hospital in Dublin. Photo: Frank McGrath

Waiting lists are mounting at Temple Street Children's Hospital in Dublin. Photo: Frank McGrath

Waiting lists are mounting at Temple Street Children's Hospital in Dublin. Photo: Frank McGrath

Dozens of children waiting up to four years for corrective surgery for spina bifida are still waiting – and some may become inoperable due to the passage of time - according to an advocacy group.

The Spina Bifida Paediatric Advocacy Group told RTE News that 56 children in Ireland have been waiting between one and four years for vital orthopaedic surgery to correct the birth defect that can cause paralysis of the legs and is often accompanied by hydrocephalus, or water on the brain.

The defect causes damage to the spine and nervous system and affects around one out of every 1,000 children born in Ireland, which also has one of the highest rates of the condition in the world.

Despite this, there are currently 649 children in Ireland who are awaiting orthopaedic surgery for the condition and others, according to a statement to the State broadcaster from Children’s Health Ireland, which has also apologised for the delays.

But the wait for surgery is becoming unbearable for the children with spina bifida, according to Dublin mother Suzanne Cahill who told RTE News that her 11-year-old daughter Ava is in agony as she awaits treatment for her feet that have turned inwards as a result of the condition.

She has been on a waiting list for surgery for a year and a half.

"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,” Ava told RTE.

Her mother said her daughter’s feet are getting worse by the day and she fears that if she is forced to wait for surgery any longer, her condition will become 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,” Suzanne Cahill said.

"It's heartbreaking for me as her mother to tell her I don't know when this is going to happen for her."

Ms Cahill said her daughter was unable to wear splints used to keep her feet straight due to friction burns and had to be “admitted to hospital because her feet got so bad I couldn't put her splints on."

Meanwhile, Úna Keightley, from the Spina Bifida Paediatric Advocacy Group, said other children are also in agony as they await surgery and the resources must be put in place to resolve the long waiting lists.

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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."

Orthopaedic surgeon Dr Connor Green told an Oirteachtas committee last November that the waiting time for orthopaedic surgery is having a detrimental effect on children, some of whom are now confined to wheelchairs after being able to walk independently previously.

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