Daniel Collins was always a very happy child, his family said. But after being diagnosed with scoliosis two years ago “he has turned into a different person” due to the increasing pain of the condition.
Daniel (14) was born with a number of disabilities, including spina bifida, epilepsy and autism. He had complex medical needs before his scoliosis diagnosis, requiring peg feeding, which involves a feeding tube being inserted directly into the stomach through the abdominal wall.
In July 2023, his medical needs increased, after his family noticed a lump on his back.
“We brought him down to see one of his doctors in Cork and they did an X-ray and he was 22 degrees curved then. He was diagnosed with scoliosis. It wasn’t on our radar at all,” his mother, Louise Collins, said.
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In February 2024, they met an orthopaedic surgeon, at which point Daniel’s curvature had progressed to 65 degrees. Six months later, in August, another X-ray was carried out and Daniel’s spine had curved to 80 degrees.
Last week, his family say they reached breaking point. They went to meet Daniel’s doctors and discovered his spine is now curved 95 degrees and he will require two surgeries rather than just one.
“And we still have no date for surgery. It’s affecting every part of him now. It’s affecting his bladder, his peg feeding, his sleep – he can’t move any more. He’ll sleep for a couple of hours out of sheer exhaustion but then he’s up again with the pain. He’s on painkillers all day,” she said.
“In February it was one operation he would need, they’d go in the side. But we were told last Tuesday he now needs two. We were in complete shock, it was like a punch in the stomach. It’s double the anaesthetic, double the risk, double the recovery.
“He will require the second one two weeks after the first ones.”
Ms Collins said she asked his consultant if the requirement of two surgeries was a result of waiting for the procedure and she was told it was.
“I don’t understand how they can let a child progress to needing two surgeries. It would have been so much simpler if they did it at 60 degrees or even before it,” she said.
“It gets riskier the longer they leave it. We’re afraid it’s going to impact on his organs. Or he’ll get to the stage that he won’t be operable.”
A spokeswoman for Children’s Health Ireland (CHI) said it could not comment on individual cases due to patient confidentiality.
“The patient’s clinical team can speak to the family directly to explore all treatment options available or to address any concerns they may have,” she said.
The family said it was difficult to see him when he was so obviously in pain. Daniel’s 24-year-old sister Alanna said that although his childhood was different from other children due to his diagnoses, he was “a very happy child”.
“He’s very energetic, he loves playing, he’s always so easy-going and smiley. But for the last two years, he’s like a different person. He’s in constant pain. He is a different child and he’s exhausted all the time,” she said.
This is something his mother also recognises in him.
“He’s not himself. He can get cross, which isn’t Daniel at all. He can be cranky. I suppose he finds it hard to do anything he enjoys any more,” she said.
The family have launched an online petition calling for an immediate date for surgery for Daniel.
“We feel like we’re just a statistic. That Daniel is just a statistic,” Ms Collins said.
“But he’s not, he’s our child and you fight for your child. We feel desperate.”
