Living with Spina Bifida: ‘I’m in pain on a daily basis’

"By the time I got to see a consultant about surgery I was told it would be too risky.”
Robert Kindregan
Robert Kindregan

19.59 27 Mar 2024

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Living with Spina Bifida: ‘I’m...

Living with Spina Bifida: ‘I’m in pain on a daily basis’

Robert Kindregan
Robert Kindregan

19.59 27 Mar 2024

Share this article

TJ Coughlan was diagnosed with Spina Bifida at age nine and was told he needed surgery to correct the curvature of his spine.

He was placed on a waiting list for four years and when he finally met a surgeon, it was too late to perform surgery.

TJ was told his curvature had progressed so far; he may not make it through surgery.


Now, aged 19, he is a full-time wheelchair user who is living in constant pain.

Spinal issues

On The Hard Shoulder today, TJ said doctors were aware of his spinal issues from birth.

“They knew there was something there and I had to have scans and things like that,” he said.

“They weren’t sure but after tests in hospital, they found I had Spina Bifida due to different symptoms of it.

“I have the second most severe type of it which means I’m paralysed from the waist down.”

Waiting list

TJ and his family knew it would require surgery from when he was nine years old.

“They immediately put me on a waiting list,” he said.

“But because there were so many kids on the waiting list I was left too long, four years altogether.

“By the time I got to see a consultant and plan for surgery, they did more tests and found it would be too risky.”

Constant pain

The County Offaly teenager said the condition affects his life in many ways.

“I live with pain on a daily basis,” he said.

“I miss out on things due to hospital appointments; it could be family occasions or school trips – anything really.

“I have to be more aware of things that might not be a good idea for me and I’m also a full-time wheelchair user.”


TJ said he is frustrated to see what has happened to him continue happening to children years later.

“I see the younger generation going through what I went through and it upsets me because they shouldn’t have to go through what I went through,” he said.

“It’s unfair on them – the system should function the way it’s supposed to.

“It has a massive impact on my life, other kids’ lives, everyone’s lives.”

Asked if a day goes by where he does not experience pain due to his condition, TJ said “barely”.

He has now started the Spina Bifida & Hydrocephalus Paediatric Advocacy Group along with his mother, Amanda Coughlan, to help others with his condition.

Main image: TJ Coughlan alongside his little sister. Image: supplied.

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