Carlow child Roxanne facing more spinal surgery in the USA

THE family of Roxanne Nolan (7), who live in Carlow town, are fundraising to take her abroad for a €60,000 operation to cure her rapidly progressing scoliosis, as Roxanne is currently unable to get on a waiting list for surgery in Ireland.

In the past six months, Roxanne’s scoliosis has progressed from 40 to 80 degrees, but she is unable to be placed on this country’s waiting list for scoliosis surgery owing to the complexity of her case and the large backlog. According to Roxanne’s mother Máirín Nolan, Roxanne’s scoliosis was first flagged at two years’ old, and if her scoliosis progresses to 130 degrees, she will be unable to eat or breathe properly.

Roxanne was born with Arthrogryposis, a rare condition where a child doesn’t move enough in utero and, therefore, the joints do not develop properly.

As a baby, Roxanne was treated for having clubbed feet; she was then placed on an urgent surgical waitlist for hip and scoliosis surgery with a surgeon at Children’s Health Ireland at Temple Street. Roxanne spent four years on that waiting list before the consultant went on extended leave in 2023 when it was announced that the HSE was to conduct a review of his past surgeries.

“There’s a cohort of children, and Roxanne is one of them, that actually sat on his list for years without any intervention,” Máirín said. “While on his list, she developed scoliosis because, if you can imagine, two hips that are dislocated and her legs, if she was lying down flat, her two knees were touching the ground at either side.” 

Máirín claims that for the four years that Roxanne was on the waiting list for surgery at Children’s Health Ireland, the institution was extremely difficult to engage with. “They didn’t answer the phone to me. They didn’t answer my letters. They hung up on me. I couldn’t get through to them. Roxanne had a couple of appointments a year with a surgeon. I would spend hours up there and go home hoping that she’d be looked after. Then a few months would go by, nothing, no letter for surgery. Then I’d go back to ringing them, emailing, no answer. They completely ignore you. This went on for years.” 

After the consultant’s departure, Roxanne was left without a dedicated surgeon for a year, according to Máirín. When Roxanne was placed under the care of a new surgeon, the family was told that she was not going to be placed on a surgical waiting list just yet because of the severity of her case and the hundreds of children ahead of her on the list.

With Roxanne’s scoliosis quickly worsening, Máirín felt that she had no choice but to look elsewhere for treatment.

“I was on a world group for Arthrogryposis and there’s a lot of people on that. I found a surgeon in America who specialises in Arthrogryposis and spinal deformity and all sorts of issues with adults and children,” Máirín said.

After Roxanne’s first consultation abroad, the doctor told them that Roxanne would first need to have surgery to straighten and correct her legs before the doctor would be able to treat her scoliosis.

“He said her scoliosis can’t be treated until she’s sitting upright and her pelvis can rotate and move so she can sit. You can’t go in and put rods in a child’s spine who cannot sit as it’s dangerous and the child will be fused in that lying down position,” Máirín said.

Last year, Roxanne underwent surgery in the USA to correct her hips that have been dislocated since birth. The family raised €120,000 for the surgery to straighten her legs and the surgery was a success, and Roxanne is now able to sit upright.

However, because Roxanne is not on a waiting list at present, she is not entitled to any funding from the HSE. In his last letter to the family, Roxanne’s surgeon also said that he will not sign the necessary papers for Roxanne to seek treatment abroad.

“For six months, I have been to the local TDs, writing to the minister for health. I had done everything as we’ve already had to bring her abroad and pay for it through fundraising and her own money to get her hips done. Now we are back to square one,” Máirín said.

Roxanne’s scoliosis surgery in the USA is booked for May and the family has until then to raise €60,000 for the surgery.

Despite all the trials and tribulations that Roxanne has experienced, Máirín said that “Roxanne is a very easy child. She gets on grand in school. She does her homework. She just wants to learn. She’s a really good little child, so there’s no stress there with her.” 

Roxanne is well supported at home by her father Declan Kelly and her brothers, twin brother Curtis and older brother Ryan.

“The stress for me is not having a child with a severe disability, because she’s a really easy, lovely child. It’s all the neglect that she’s suffered here in Ireland. And now we’re back again. Here she is with an 83 degrees curve and they won’t even put her on a surgical waiting list,” Máirín said.

The Nolan family is accepting donations through a GoFundMe page at https://www.gofundme.com/f/urgent-call-to-help-roxanne