'I don’t get any pain when I’m playing': Dancer and camogie player is a scoliosis success story
Eleven But With As Has Helen Crumlin Treated Picture: At Diagnosed Gleeson Scoliosis Hospital Baby Successfully Year Linehan Dan Old A Been Was
At just 11 months old, Helen Gleeson was diagnosed with scoliosis and a spinal tumour but now at 11 years old she is playing camogie, Gaelic football, soccer, and learning sean-nós dancing.
It is not the image we usually have of children with this devastating spinal condition.
Helen, living in Holy Cross, Tipperary, is a big sports fan.
“I play hurling and football in the summer but they’re finished up now. I’m playing soccer and doing set dancing right now and sean-nós.
“I like hurling probably the best. I don’t get any pain when I’m playing. Last year we had our county final in the U-12 and I was the captain for it and we won.”
The situation was very different when she came to CHI at Crumlin hospital before her first birthday.
Her mum Catherine said: “We knew there was something seriously wrong. She had lost mobility, lost the use of her legs, and seemed to be in desperate pain.
“It was discovered then she had neuroblastoma — a tumour growing in her spine — and that would be the cause of her scoliosis, early onset scoliosis.”
Helen now has growing rods implanted in her spine.
She has had about eight surgeries, the most recent was in September, with more to come in her teenage years.
Catherine said: “She has the rods lengthened, they’re growing rods so they grow with her.
"She’s on her third set, I suppose because she got them in so young. She got them just before her second birthday, with the first surgery.”
The surgeries are “a big ordeal” with one lasting about 11 hours, and Catherine remembers being told eight consultants were in the operating theatre at one point.
Helen chimes in: "The nurses take good care of you, they come in and ask 'how are you' and they talk to you."
Catherine and her husband John are aware they avoided many delays facing other families.
“And I do think that we have a great service here in Ireland, so to have confidence in it. Once you do get access, it is a fantastic service.”
Helen’s surgeon at Crumlin hospital, Pat Kiely, said: “She’s very resilient, she’s really mentally very strong. And actually a lot of the spine kids are, they go through it.
“You can imagine the fear for them, but they’re so inspiring as a group.”
Children like Helen are monitored through their teenage years after the final set of rods are implanted.
"Over 90% of kids never need to come back," Dr Kiely said.
Overall this year, at least 520 spinal surgeries are expected to be done across the CHI sites, up from about 460 last year.
“Lots of kids are getting treated and a lot of them are doing very well,” Dr Kiely said.
He acknowledged the “significant back-log of complex cases” which build up over the pandemic but said many patients are now seeing the impact of recent funding increases.
“With the paediatric spinal team that’s been formed there’s been a rationalisation and organising of where these kids are going, I think we are up 14% or 15% on last year in terms of volume,” he said.
Another 20 children had care in London or New York hospitals, as well as 43 in Blackrock private healthcare this year.
“There’s a lot of focus on sending people overseas but it’s a drop in the ocean in terms of numbers, there’s far more being done in Ireland as should be the case,” he said.
“We need to put the resources into our own country, develop our service, improve systems and solve our problems ourselves.”