'Last year the curvature on my spine was over 70 degrees – Now I'm back at basketball' – Girl (14) who developed scoliosis

Grace Byrne (14) is so elegantly poised, you’d think she was an accomplished ballet dancer. Yet not so long ago, she was so crooked and stooped, she had to give up sport and was living on painkillers. It hadn’t always been like that. As a little girl, Grace loved to be active. “I was a very busy child and always on the go,” she says. So, when she was about eight, she joined Dublin Lions Basketball Club near her home in Clondalkin, and was smitten. She also enjoyed camogie and football.

However, when she was 10, she began to experience back pain, especially after strenuous physical exercise. “I took her to the doctor to be checked,” explains her mother, Denise, adding, “He sent her for an X-ray, and then referred her to Our Lady’s Children’s Hospital, Crumlin (OLCHC). They found a curvature in her spine, but it was mild; at that point, it was about 20 degrees. They said they’d keep an eye on her.”

From this moment on, things went slowly downhill. Grace was often in pain, but her problem still didn’t warrant urgent medical intervention. She was prescribed painkillers, and at one point was referred to a physiotherapist. “He was brilliant,” says Denise. “He gave her exercises and he worked on her back. But even though he could see she had scoliosis, he didn’t think she would need an operation.”

Over the next 18 months, even though Grace was clearly getting worse, Denise battled to get a hospital appointment for her daughter. Or if she did manage to get an appointment, it would be cancelled — on one occasion, at 4pm the day before. She was advised by other concerned parents and scoliosis advocacy groups to keep the pressure on, to get the help Grace so desperately needed. “We didn’t see anyone from about August 2016 until March 2017,” says Denise. “At that point, she was in bits. She was constantly taking tablets. Her life was an absolute misery, and she was missing so much school, the Board of Education had to be notified. If a child misses more than 20 days, it has to be informed. But the principal sorted it out. The teachers could tell when Grace was in pain; it was so obvious.”

Her daughter agrees: “It got really bad. The deterioration became really clear when I went to have my Confirmation dress made. In January [2017] I had the first fitting, but by March, the dress didn’t fit me anymore, because the rib hump [caused by curvature of her spine] was now so prominent. I couldn’t even lean back in my chair because it hurt so much.”

Grace was now taking so many painkillers, she and her mother feared they would cause irreparable damage. “I hated taking them,” says Grace. “I was taking ibuprofen and paracetamol, which are full of chemicals, but they weren’t even fixing the problem. They made me feel sick. But by then, I couldn’t go anywhere because I was in so much pain.”

As the months marched on, Grace was getting progressively worse, but they couldn’t seem to get the help they needed. “I was phoning the hospital every single day, badgering them for an appointment,” says Denise, “and getting nowhere. But finally, somebody worked out that there had been an administrative error.”

Grace takes up the story. “When I got worse, instead of taking me off the elective list and putting me on the surgical one, they put me back on the elective list. And that’s why they kept cancelling,” she explains. However, once the problem was identified, the situation improved.

In February of last year, Grace was seen by consultant orthopaedic surgeon Pat Kiely at OLCHC. “They took an X-ray,” she says. “The curvature was now over 70 degrees, and it certainly felt that way. Mr Kiely said straight away I was going to need surgery.”

They were offered a date in mid-April, but Denise felt it would be wise to put it on hold, as she had broken her ankle, while a much-needed family holiday had already been booked. So Grace was admitted to hospital in July. She had to undergo extensive tests before the process could begin. “By then my breathing was being impacted by my [crooked] spine squashing my lungs,” Grace explains. “I’d had to stop basketball altogether. That summer I was very, very lopsided.”

Denise says the care and attention they got from the staff at Crumlin was second to none. “Pat Kiely and his team explained everything,” says Denise. “They’d say to Grace, ‘Now this is about your body, so is there anything at all you want to know?’ They were absolutely outstanding. All the mothers have the utmost respect for Mr Kiely [co-founder of Straight Ahead]. He’s done so much fundraising to get rid of the backlog.”

A simple explanation of this surgery is that screws are inserted along the spinal column. Rods are then fed through openings in the screws, down the length of the back. When these are tightened, the spine straightens out. It’s then strengthened using tissue harvested from the spine itself. “It’s a long op,” says Denise. “Every part of the body has to be constantly monitored. Their aim is the best correction they can get, with no collateral damage.”

Remarkably, Grace was able to get out of bed the very next day. “It felt horrible,” she recalls. “But when I stood up, I felt much taller.” Five days later, she was able to go home. “When I went back after two weeks to have the stitches out it [the wound] looked horrible,” Grace recalls. “So they put me on medication. However, two days later I was so weak I couldn’t even walk, and had to go back to hospital. The took me to resus [in the emergency department] straight away. They cleaned out the wound, then they fed a Picc [peripherally inserted central catheter] line up through my arm and into my chest for the medication.” Grace spent two weeks in hospital. She continued with the antibiotics for a further 10 weeks.

“It felt like it was never going to get better,” she says. But eventually, it did get better and Grace could resume living a near normal life.

“I’m back at basketball,” says a clearly delighted and happy Grace, who stands straight as a ramrod, just like a prima ballerina.

A spokesman for OLCHC said they were aware that Grace’s appointments to see a consultant were postponed on a number of occasions in 2017. “Crumlin can confirm that they have apologised to the family,” said the spokesman.

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