by Louise Doyle
THE mum of a young Kilmacrennan girl who waited for more than half her life for spinal surgery, and whose lung capacity dropped 46 per cent because of her spine’s curve, has called for no more children to languish on waiting lists.
Kylie Ann Stewart will turn 11 next month.
She has Spina Bifida, a condition that occurs when the spine and spinal cord don’t properly form.
She is recovering well since undergoing major spinal surgery in Crumlin in May.
But her journey was fraught with surgery cancellations, and fears that her skin breakdowns could lead to sepsis.
Speaking to the Donegal News, Kylie Ann’s mum, Catherine, said the experience was “horrendous” and “unjust”.
“Kylie Ann went on a waiting list in 2018 . The next couple of years we dealt with a lot of skin breakdowns, her skin was getting worse and that brings a risk of infection. It was horrendous and unjust.
“In the summer of 2022 we were given a date for surgery that August. That surgery was cancelled, and a new date was issued for October 2022. That surgery was again cancelled, and then we really heard nothing until May 2023 when we were advised by post that her surgeon was pausing all complex surgery.”
There was a glimmer of hope for the family when a new surgeon was appointed to Kylie Ann in September 2023.
“Our spinal surgery had been based in Temple Street but we were transferred with other patients to Crumlin. No one knew what was happening, we were in limbo land.
“We knew we had a new surgeon but he told us he had no real plans for Kylie Ann, and at that stage we didn’t know how long it was going to be until we got a new appointment.”
Catherine told how her worst fears were realised when she discovered a round circle on her daughter’s back which also appeared to have fluid.
“I rang the spinal team straight away. We had a new X-ray done which revealed the curve in Kylie Ann’s spine had jumped 36 degrees from January to November 2023. The surgeon said there was no more kicking this down the road. He told us that if Kylie Ann didn’t get the surgery immediately, it may never be possible. The surgeon told us that he may not be able to do the surgery all in one day, he said that that was something he needed to prepare us for because she had been left that long.”
A series of pre-op consultations ensued, which revealed Kylie Ann’s lung capacity had decreased.
“The biggest shock was to find out Kylie Ann had lost 46 per cent lung capacity because of the curve in her spine.”
Despite their ordeal, Catherine said she is grateful that her daughter received surgery while so many other children continue to wait, and are faced with the potential of having to go abroad.
“We class ourselves as very grateful that we got to stay in Ireland and that Kylie Ann’s surgery took place in this country. We couldn’t bear the thought of having to take her out of the country. I feel for those children who have to go abroad. Kylie Ann was in hospital for three weeks after her surgery, and even travelling home to Donegal was tough on her. She felt every bump on the road. We were lucky in that my sister-in-law lives in Tyrone, so we were able to stop off with her for a break for a couple of hours which meant Kylie Ann could lie flat.”
Kylie Ann pictured in hospital.
Catherine said calls within government to end waiting lists for scoliosis surgery for children must be given action over words.
Earlier this year, Catherine and her daughter travelled to the Dáil to make their voices heard on this.
Kylie Ann’s situation and that of so many other children was highlighted in the Dáil by Deputy Pearse Doherty TD.
“My daughter went on a waiting list in 2018, and it was in 2017 that the then Health Minister Simon Harris said no child would wait longer than a few months but my child was waiting for six years.
“Your whole life is on hold. The Covid pandemic presented another nightmare for my family. My older children are competitive Irish dancers. I didn’t want them competing and going to places while we were waiting for Kylie Ann’s surgery. It was holding them back. I was depriving my other children, just in case they carried something back into the house.
“Even when Kylie Ann got her surgery appointment for May, I still didn’t believe it until we were in theatre.
“It consumes your whole life. It was the first thing I thought of when I opened my eyes in the morning and the last thing I thought of at night. My heart breaks for all those children who are still waiting.”
Catherine said her biggest fear for Kylie Ann was sepsis.
“In 2019 we went on holiday and Kylie Ann took a bug and ended up in hospital. She needed kidney dialysis and had to lie on her back. That was the start of the skin breakdown and we then had a full year of needing the public health nurse to redress it. My biggest fear for Kylie Ann was sepsis.
“She now has a good quality of life. She was never going to be able to walk. She uses a wheelchair, but she is straight and has no lump in her back.”
Catherine and her family have been supported by Spina Bifida and Hydrocephalus Paeds Advocacy Group.
She urged other parents to reach out to them for support.
“The advocacy group are amazing. They are a wealth of knowledge, and they always have your back. You’re never on your own.”
Earlier this month, Health Minister Stephen Donnelly was asked to clarify scoliosis surgery waiting list figures. He said that spinal surgery waiting list of 138 paediatric patients “will be reduced by at least a hundred by the end of the year”.
With a general election creeping close, Catherine gave a message to those in government and to those seeking election.
“You need to start listening to families. Don’t whitewash people. Action speaks louder than words. Give these children their surgery. End their pain.”
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