I waited four years for life-changing op – now it’s too late, says teen in plea
A YOUNG man who suffers daily pain because he was left on a scoliosis surgery waiting list for so long he became inoperable today pleads with the Government, saying: “You need to stop this happening to other kids.”
TJ Coughlan, 19, from Tullamore, Co Offaly, was born with Spina Bifida Hydrocephalus and underwent his first back surgery at six days old.
2
2
When TJ was nine, he was diagnosed with scoliosis and his parents were told their child would require surgery on his spine to correct a curve in his back.
However, the youngster was left waiting four years for this operation and when he finally saw a surgeon at the age of 13 he was told it was too late.
TJ’s spine has become so twisted that he was no longer able to have the operation with docs concerned he may not survive the surgery.
As a result, TJ — who is in a wheelchair — has been left with a serious curve in his lower back. This in turn has left him with a large lump in his back that causes him pain, chest difficulties and breathing issues.
READ MORE ON OUR CAMPAIGN
However, brave TJ is determined to help stop similar failures happening to other children and is working with his mum Amanda to campaign for an end to waiting lists for kids in need of surgeries.
He told The Irish Sun: “We can’t keep going on like this with kids like me being left on waiting lists.
“It is leaving us in pain, worrying about what’s going to happen and we can’t just keep going like this — it is not fair.
“To be honest, it upsets me to see how younger kids are being left.
MOST READ ON THE IRISH SUN
“There needs to be more proactive care for kids younger than me because I was left way too long and that can’t keep going on because it will just leave kids in pain that they shouldn’t have to go through on a daily basis.
“My mam and the advocacy groups should not have to fight so hard for the other kids. She did her best for me and now she is fighting for others.
“I feel it is important for me to speak out and help because I think my experience helps them portray the message they are trying to get out there.
“There should be more care for these younger kids.”
After failing to get his surgery, TJ now suffers daily pain and complications with his lungs that can cause him breathing problems.
Mum Amanda told The Irish Sun that she did everything a parent could do to fight for her son but their family was still let down by the system.
Our Kids Can’t Wait Campaign
WAITING lists in Ireland have long been a national disgrace.
More than 106,000 children are on hospital waiting lists for all treatments. However, a new source of shame has emerged as 327 children wait for life changing spinal surgeries.
Their conditions are getting worse while they languish on waiting lists.
Such are the delays, many child patients will be outside the therapeutic window when their treatments are approved.
Earlier this month, the Seanad heard how at least one child has become permanently paralysed since the issue was raised publicly before Christmas.
Their plight has been spearheaded by campaigning Senator Tom Clonan, who himself has a child with a disability.
Taoiseach Leo Varadkar has even admitted that the health service is failing these kids.
Children are being allowed to deteriorate due to mismanagement, which has allowed the waiting lists to grow.
The Irish Sun’s Kids Can’t Wait campaign aims to shine a light on how the State is failing sick children and give their families a voice.
It will also force the Government to do something to clear the backlog of operations and give these children a chance of living a normal life.
She said: “We were very proactive with TJ’s care. I did everything you were supposed to do.
“Took him to all his appointments, pressed the doctors but he didn’t get the surgery in time.
“Now because his spine is so badly twisted, TJ’s trunk is very small which gives him problems and makes him prone to pneumonia, chest infections and it makes it difficult for him even to sit.
“He’s left with quite a large lump on his back which leads to problems with his posture, which has a knock-on effect on his legs and feet.
“He’s quite uncomfortable. He is in a lot of pain. On certain days, particularly when its cold, he has a lot of pain. He doesn’t have the lung capacity of a normal 19-year-old.
“If he’d had the surgery, he would be straighter, his lungs would have been able to grow better, he would have been able to breath better, his posture would be better, he wouldn’t be suffering with skin problems because of the lump on the bottom of his back. He wouldn’t be suffering with pain and discomfort.
“We have to prop up TJ and put him in certain positions. I know we all have aches and pains but he’s only 19 – he shouldn’t have to go through life in pain because a system failed him. And now here they are consistently failing again. Things are getting worse.”
Furious about the failures in TJ’s care, mum Amanda help set up the Paediatric Advocacy Group for Children with Spina Bifida Hydrocephalus in 2016 alongside Una Keightley.
He (Donnelly) assured me that it wasn’t going to go down a black hole and here we are now two and a half years later and that money’s gone down a black hole and children are still suffering.”
Amanda
TJ is helping his mum campaign for improvement in children’s care by telling his story.
Amanda said: “It is not an easy situation for TJ to talk about and to highlight everything he’s gone through over the years but the only way to highlight these problems is to put a face to these children.
“These are children who go to school and who participate in normal life and CHI seem to think they can just leave them to wait.”
The group have spent the last eight years meeting with hospital executives, politicians and families to try and push for improvement in care for children but Amanda believes the situation has grown worse.
She told The Irish Sun: “The situation is now worse than it was 10 years ago. It is harder for families to access care and proactive care for their children.
“And it’s not because the doctors aren’t willing to do their jobs. The doctors are brilliant, it’s because of the mismanagement of resources and care.
“With one of the most complex procedures, we have since children left waiting for that surgery for five years.
“We have seen kids with spina bifida allowed to deteriorate and end up with halo tracts — these are basically steel cages that they screw into a child’s skull (to help correct a spinal deformity).
“A number of our children have had to have that, not because they needed it when they were first listed for surgery but because they were allowed to sit and deteriorate on a waiting list.”
In 2017, Health Minister Simon Harris promised that no child with scoliosis or spina bifida would be left waiting more than four months for spinal surgeries.
This promise was broken. In 2022, the current Health Minister Stephen Donnelly made a similar commitment when announcing €19m of funding specifically for the care of these children.
However, last month the Health Minister ordered auditors into Children’s Health Ireland to probe how this money had been spent as he admitted he did not know if every penny was spent as it should be.
Amanda told The Irish Sun that she previously warned Minister Donnelly in June 2022 that this funding would be spread too thinly by CHI.
She said: “In June 2022 we were concerned about where the money was going for what he called the Spina Bifida and Scoliosis Recovery Plan. I told him that I was concerned that money was going to be spread too thinly across CHI to make a difference.
“He (Donnelly) assured me that it wasn’t going to go down a black hole and here we are now two and a half years later and that money’s gone down a black hole and children are still suffering.
“And we’re probably in a worse position now then we were a year ago.”
