by Louise Doyle
The mother of Kylie Ann Stewart, a young girl from Kilmacrennan who endured a long wait of over six years for necessary spinal surgery, is urging for immediate action to prevent other children from remaining trapped on waiting lists. Kylie Ann, who will celebrate her 11th birthday next month, has been living with Spina Bifida, a serious condition characterized by improper formation of the spine and spinal cord, resulting in major health complications.
Since her significant surgery at Crumlin Hospital in May, Kylie Ann has been recuperating well. However, her path to recovery was marred by numerous surgery cancellations and ongoing fears regarding her health as skin breakdown issues raised the possibility of serious infections like sepsis.
Catherine Stewart, Kylie Ann’s mother, described their ordeal as nothing short of “horrendous” and “unjust,” expressing deep disappointment over the long wait. “Kylie Ann was placed on a waiting list in 2018, and over the ensuing years, she suffered from significant skin issues which heightened the risk of infection,” she revealed. “It was a torturous experience.”
After being promised a surgery date in August 2022, the family faced further despair as that date was canceled, followed by another postponed for October. Eventually, in May 2023, they were informed through the mail that the lead surgeon had halted all complex surgeries, plunging them back into uncertainty.
However, hope emerged in September 2023 when a new surgeon was assigned to Kylie Ann. The family was relocated from Temple Street to Crumlin, but still faced a frustrating limbo, completely unaware of the timeline or plans for her case. “We had a new surgeon, yet he admitted he didn’t have a concrete plan for Kylie Ann, which left us in a state of distress,” Catherine explained.
Ultimately, Catherine’s heart sank as she discovered a concerning circular sore on her daughter’s back, raising alarm. “I immediately contacted the spinal team,” she recounted. “The subsequent X-ray revealed the alarming news that Kylie Ann’s spine curve had escalated by 36 degrees in less than a year. The surgeon warned us that immediate surgery was critical; otherwise, she might never have the chance to undergo the procedure.”
In a series of consultations leading up to the surgery, it was revealed that Kylie Ann’s lung capacity had dramatically diminished, a side effect of her condition. “The greatest shock came when we learned that she had lost 46 percent of her lung capacity due to the spinal curvature,” Catherine lamented.
Despite their harrowing experience, Catherine felt immense gratitude that her daughter could have the surgery in Ireland, unlike many other children who face the distressing possibility of seeking treatment abroad. “We are incredibly thankful that Kylie Ann received her surgery here. The thought of traveling overseas for help is unbearable,” she added. Following the surgery, their journey back home to Donegal was filled with discomfort for Kylie Ann, who is now using a wheelchair as a result of her condition.
Catherine emphasized that urgent reforms are needed to eliminate waiting lists for scoliosis surgery. Earlier this year, both she and Kylie Ann made an impactful appearance at the Dáil, advocating for change. Deputy Pearse Doherty also raised their case, highlighting the prolonged waiting times children face in light of promises made by previous health officials that no child would wait more than a few months for such essential surgeries.
Catherine recounted, “The entire experience put our family on hold for years. The pandemic exacerbated our situation significantly, as I was hesitant to let my older children participate in their competitive Irish dancing activities, fearing any illness they might bring home could impact Kylie Ann.”
“Even as the appointment for surgery approached in May, I remained skeptical until we were actually in the operating room. It was an all-consuming stress; it invaded my thoughts from morning until night,” she shared. Her fear of complications, particularly sepsis, haunted her after a previous health scare for Kylie Ann that involved a serious infection during a family holiday.
Following her surgery, Kylie Ann now experiences a significantly improved quality of life. While she has always relied on a wheelchair and will never be able to walk, Catherine highlighted, “She is straight and free from a visible lump in her back.” The family received vital support from the Spina Bifida and Hydrocephalus Paeds Advocacy Group, which Catherine encouraged other families to reach out to during their times of need.
Earlier this month, Health Minister Stephen Donnelly updated the public on the waiting list statistics for spinal surgeries, stating that he expects the list of 138 pediatric patients to be reduced by at least a hundred before year’s end. As the general election approaches, Catherine has a powerful message for those in government and those seeking election: “Start listening to families. It’s time to back up your words with actions. Give these children their needed surgeries and relieve their suffering.”
Kylie Ann pictured in hospital.
Posted: 8:00 pm November 2, 2024
Well, ladies and gentlemen, gather ’round! We’ve got a tale that’s equal parts harrowing and heartwarming, like finding a tenner in a pair of jeans you haven’t worn since last summer – unexpected, but delightful!
So, we’re talking about Kylie Ann Stewart, a brave young lass from Kilmacrennan who’s been playing the waiting game longer than any of us would like to admit. Seriously, she started her waiting list saga back in 2018 – if waiting were an Olympic sport, she’d definitely be bringing home the gold! What’s her sport, you ask? Oh, just trying to get a date for spinal surgery, you know, minor details.
Her mum, Catherine, describes the experience as "horrendous" and "unjust." Now, I’d agree; if I had to wait years for something as serious as spinal surgery, I would be singing my complaints louder than a karaoke night in a pub! Go on, Catherine, tell us how you really feel.
Kylie Ann has Spina Bifida, a condition where the spine and spinal cord don’t quite form like they should. And poor Kylie didn’t just sit around twiddling her thumbs while waiting – no, she had skin breakdowns and lung capacity drops worse than my enthusiasm for Monday mornings! Imagine being told you’ve lost 46% of your lung capacity because of a spine that’s decided to take the scenic route rather than heading straight to surgery. That’s like losing more than half of your ability to breathe — completely bonkers!
Now, after a series of cancellations that would make even a seasoned event planner weep, Katherine finally got a date for the surgery in May 2023. But was it that simple? Oh no! They wriggled around like a cat in a bath. They just love to mess with families, those cancellation notices, don’t they? One minute you’re excited about surgery, the next you’re left wondering if it’ll happen at all. If there ever was a "horrendous’ waiting list, this one takes the cake – and the icing too!
Thank goodness, they finally found a new surgeon who was like, "Okay, enough is enough!" Not only did he reveal that Kylie Ann’s spine had basically pretended it was going on a bender (jumping 36 degrees out of line), but he also had to break the news that Kylie Ann’s situation was critical — a reality check that was alarmingly real.
But here comes the silver lining: despite the nightmare of the waiting list, Kylie Ann eventually received the surgery she so desperately needed. And bless Catherine’s heart, she still feels grateful that they didn’t have to trek abroad for the procedure. I mean, can you imagine packing up the entire family for surgery tourism? Talk about adding stress to an already stressful situation!
Catherine has become the voice for all those kids still stuck on waiting lists, championing a cause with the power of a lioness! They even stood in front of the Dáil to raise awareness. "Action speaks louder than words!" she proclaims, proving that sheer persistent mum energy can shake the foundations of government bureaucracy.
Now, I see you thinking, “What can we do?” Well, first, let’s pour one out for the advocacy groups like Spina Bifida and Hydrocephalus Paeds Advocacy Group. These folks are like superheroes in scrubs — always there to help parents in need, ready to lend an ear or a piece of much-needed advice.
And here’s Catherine’s nail-on-the-head point for the politicians: “Listen to the families!” Oh, how true! They need to stop just saying things like, “We’ll fix it,” and actually put their money where their mouths are! We want results – nifty surgery schedules, and double-checking those waiting lists, please!
So, let’s raise a toast to Kylie Ann Stewart, her courageous mum, and all the children waiting for their spine surgery. Here’s hoping they get that relief sooner rather than later because every child deserves the chance to live pain-free, back straight, and ready to take on the world!
And remember, folks, when life hands you a waitlist, make some noise! Don’t let them get away with it because action, my friends, speaks a hell of a lot louder than just words!
N has finally had her much-needed surgery and is on the mend! After years of battling health complications and the frustrations of cancellations, she’s finding her way back to a better quality of life. Her mother, Catherine, reflected the collective sigh of relief from parents everywhere when she expressed gratitude for the surgery being performed in Ireland. Traveling abroad for treatment is a burden too heavy for many families to bear.
The ordeal, while harrowing, has also sparked Catherine’s advocacy for urgent reforms to the healthcare system, specifically calling for an end to long waiting lists for essential surgeries like scoliosis operations. She and Kylie Ann’s poignant testimony resonated in the Dáil, as they shared their story, shining a light on the plight of children navigating the maze of our healthcare system.
As they continue their journey, with Kylie Ann now requiring a wheelchair due to her condition, Catherine’s commitment to ensuring no other child has to endure such a drawn-out struggle remains resolute. Her plea to those in power as the election draws near is clear: action must be taken to honor the promises made to families awaiting crucial medical care.
Kylie Ann’s story is a testament to resilience, and her journey from distress to recovery serves as an inspiration. Now, she not only carries the spirit of a fighter but also represents all children currently waiting for their chance at a healthy life. Let’s rally behind her and echo Catherine’s call for change — every child deserves timely access to the care they need!