A Donegal girl who has waited five years for complex spinal surgery is set to visit Dáil Éireann today as families highlight the waiting list crisis.
Ten-year-old Kylie Ann Stewart from Kilmacrenan is one of 327 children in Ireland awaiting scoliosis surgery with Children’s Health Ireland.
Year after year, her parents Jonny and Catherine have been heartbroken by delays as Kylie Ann’s condition worsens.
“We are five years waiting on Kyphectomy complex surgery,” said Jonny.
“Kylie Ann’s back curve is now at 138 degrees. Anything over 50 is serious and at her last appointment, we were told that she is 10 degrees off being inoperable.”
Kylie Ann lives with a severe spinal curve
The Stewarts have been told that Kylie Ann will receive surgery within the next two months, but the operation has been cancelled twice in the past year, leading them to have little hope.
Kylie Ann will be joined by her mum as members of Spina Bifida Hydrocephalus Paediatric Advocacy Group and the Scoliosis Advocacy Network show support for a Sinn Féin motion which sets out a plan to tackle surgical waiting lists for children with scoliosis and spina bifida.
Ireland’s two most recent Health Ministers (Simon Harris and Stephen Donnelly) have promised that no child in Ireland would wait more than four months for scoliosis surgery.
As the situation worsens, three quarters of children are waiting longer than four months for orthopaedic surgeries.
“Children like Kylie Ann have been left to languish and deteriorate for far too long,” Catherine said.
“The waiting lists, despite investment from government, are at an unacceptable high and families will no longer accept the poor attempts by CHI to manage this situation.
“We are asking all TDs and parties across Ireland to support our ask for an independent taskforce that has statutory powers to direct CHI to finally bring to an end the suffering of children up and down the country.”
Kylie Ann has been waiting for surgery since 2018
Sinn Féin spokesperson on Health, David Cullinane TD, has called on the government to act on the concerns of parents, advocates, and clinicians.
Speaking ahead of today’s debate, he said: “Parents and advocates want a comprehensive, transparent, structured programme of work to be carried out by an independent taskforce which includes them, and clinicians, in its reporting process.
“The taskforce must be transparent, independent of CHI management, and must implement a plan that includes the full suite of care from pre-op to post-op, transitional care, specialist rehabilitation, and full and appropriate access to community services.”
The motion also calls on the Government to resource and expand the paediatric orthopaedic elective care centre at the National Orthopaedic Hospital, Cappagh, and to deliver a centre for elective paediatric urology services.
Deputy Cullinane added that: “Promises have been made and broken time and again. Children need the Government to increase domestic capacity, such as at Cappagh, and make full use of international options. Children with spina bifida need an elective paediatric urology centre. The new Children’s Hospital will not be a silver bullet, and children cannot wait for the new hospital. There is an urgency to this and all options must be on the table.
“Our motion for Tuesday sets out exactly how Sinn Féin, in cooperation with parents, advocates, and clinicians, would implement change. We would work tirelessly to improve health and social care services for children in need of urgent intervention.”
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