Call for Action: Kilmacrennan Mum Urges End to Children’s Surgery Delays
By Louise Doyle
Kylie Ann Stewart, a young girl from Kilmacrennan, has recently overcome a significant health hurdle after enduring a prolonged wait for spinal surgery that lasted more than half her life. As she approaches her 11th birthday next month, her mother, Catherine Stewart, is calling for action to prevent other children from enduring similar delays in medical care.
Kylie Ann, diagnosed with Spina Bifida, a congenital defect affecting the spinal cord and vertebrae, experienced a troubling drop in lung capacity—46%—due to the curvature of her spine. After undergoing critical surgery at Crumlin Hospital in May 2023, Kylie Ann is now on the path to recovery, but the journey to get there was arduous, marked by multiple surgery cancellations and ongoing health concerns.
A Prolonged Wait for Surgery
“Her experience has been nothing short of horrendous and unjust,” Catherine shared in an interview with the Donegal News. Kylie Ann first went on the waiting list in 2018, but over the years, she suffered numerous setbacks, including extensive skin breakdowns that increased the risk of infection and possible sepsis.
The family initially received a surgery date in August 2022, which was subsequently canceled. A new date in October 2022 was also voided, leaving them with no updates until they received a letter in May 2023 indicating that Kylie Ann’s surgeon was pausing complex surgeries altogether.
“We felt like we were in limbo,” Catherine recounted. In September 2023, the family learned that a new surgeon had been appointed, yet Catherine shared that there were still no concrete plans for Kylie Ann’s surgery.
Urgent Medical Concerns
Catherine’s fears were realized when she discovered concerning changes in her daughter’s health, prompting immediate appeal for help from the spinal team. An X-ray revealed the curve in Kylie Ann’s spine had worsened significantly, necessitating urgent surgical intervention.
“Our new surgeon indicated that immediate surgery was crucial,” Catherine explained, noting the gravity of the situation. He articulated the possibility that the surgery might not be completed in one day due to the extensive delays in treatment.
During pre-operative consultations, Catherine faced another terrifying revelation: Kylie Ann had lost a substantial amount of lung capacity due to her spinal condition.
Grateful Yet Concerned
Despite the distressing journey, Catherine expresses gratitude that Kylie Ann received the crucial surgery in Ireland, rather than facing the prospect of going abroad for treatment—a reality for many families in similar situations.
"We’re fortunate that we stayed in Ireland for her surgery. I cannot imagine the stress of seeking treatment abroad,” she declared. However, as Kylie Ann recovers, Catherine remains concerned for other children still on waiting lists.
Advocacy Efforts Intensify
Catherine has been an outspoken advocate for change, traveling to the Dáil earlier this year to share their story and promote awareness around the ongoing issues with waiting lists for scoliosis surgeries. Her daughter’s case garnered attention from Deputy Pearse Doherty TD, highlighting the urgent need for reform in the system.
Catherine emphasized that no child should have to wait years for medically necessary surgery. “When will action speak louder than words? Children are suffering while we wait for solutions," she stated.
Earlier this month, Health Minister Stephen Donnelly addressed the issue, announcing that the waiting list for pediatric spinal surgeries should see a reduction of at least 100 patients by year’s end. However, Catherine urges a more aggressive approach from the government.
A Rally for Change
As general elections loom, Catherine urges all candidates and existing government officials to take the plight of children like Kylie Ann seriously.
“You need to start listening to families and act on your promises. Don’t whitewash the issue; children deserve their surgeries to end their suffering,” she implored.
Support for the Stewart family has come from organizations like the Spina Bifida and Hydrocephalus Paeds Advocacy Group, which Catherine encourages other parents to contact for help and resources.
Conclusion
Kylie Ann’s story is one of resilience, hope, and a call to action. As she navigates her recovery, her mother’s plea echoes the urgent need for systemic change within pediatric healthcare in Ireland. The message is clear: no child should have to endure unnecessary waits for critical medical procedures.
For more on this ongoing situation and the impact on families, readers are invited to share their views in the comments or reach out to advocacy groups to get involved. Together, we can bring a change to the lives of children battling such critical health challenges.
