'The rod actually came up through my skin, in my back': Kira on the delays treating her scoliosis
Said Mullingar, But Her, Mark Her The Staff The Who Plications Praised Left In Their Kira Treated Paediatrician Particularly Have
A young woman who faced long delays with scoliosis surgery as a child and went public with her concerns to help change the system said it is “appalling” to see delays and crisis situations still facing families today.
Kira Carberry, now aged 20, was diagnosed with scoliosis in May 2013. She is speaking out in the wake of the issues that have emerged in relation to surgeries for children at CHI at Temple Street, which have been described as "alarming" by Taoiseach Leo Varadkar.
“I’ve had four surgeries in my life, all from complications of waiting so long,” she said.
“When I was first diagnosed, I only had a 45 degree curve (in my spine). I had a paediatrician in Mullingar and she referred me up to Crumlin. I didn’t actually see a consultant in Crumlin until April 2014.
“At that time my curve was over 90 degrees, and I also had a lumbar curve at the bottom which was turning into an S, at 65 degrees. I didn’t have that before. My scoliosis was fast-progressing.”
At that point, the Crumlin doctor assessed her as needing two operations. During these procedures she had ribs removed, her spine pushed into place to allow her lungs room, as well as spinal fusion with rods fitted.
“I had to get my pre-op tests done at the end of April in 2014 but I actually didn’t get operated on until October 2014,” she said.
She added: “I was only 11 then at the time, so all of this was very much for me.”
Kira praised the staff who treated her, particularly her paediatrician in Mullingar, but said the complications have left their mark.
As her condition deteriorated, she found herself back in hospital during 2016 and 2017.
Further operations followed after her mother noticed her back was changing again, confirmed in an X-ray by her local paediatrician.
Kira said: “she noticed something floating in my back, like a part of a screw or something.”
She said that in November 2016: “The rod actually came up through my skin, in my back, at the top of my back, the rod came through and pierced my skin. You could see it, it was not great. It was extremely painful, and there was a significant infection as well.”
Today, she still uses an oxygen machine at night-time and takes painkillers.
“Everything just went downhill, I don’t know how many times a year I am in hospital, still to this day” she said.
“I still go to my GP because it’s getting worse again. Obviously I’m in adult services now, and I haven’t been seen since 2019.”
Kira featured on RTÉ in 2017 as part of an investigation into living on hospital waiting lists.
“I really thought from that programme that the HSE would really cop on, and just think ‘these kids have gone through enough now, we need to change the system,” she said.
“We need to get more surgeons in, we need to get more staff, more theatres and more focus on scoliosis.’”.
She has found reading and listening to reports on what is happening now in CHI at Temple Street quite distressing.
“The waiting lists are just crazy,” she said.
“Nothing has changed. The numbers are basically the same as when I was on the waiting list. Back then there was 300 children on the waiting lists,” said Kira.
CHI said there were 261 children on their waiting lists up to last week.
“It’s deteriorating in front of us,” Kira said.
“That’s why we went on Primetime, me and my mother and all the other children as well, just to get the Government and the HSE to see the repercussions of these surgeries, of how important is it to get it sorted out early.”