'We feared life-changing surgery hope was gone after we couldn't get travel insurance'

A 12-year-old boy's fearing his chance for life-altering spinal surgery had been dashed over travel insurance has now been given the green light to head to the United States.

Darragh Higgins, from Ireland, who lives with spina bifida, hydrocephalus and scoliosis, had been lined up for an operation as part of a Government initiative that would require a trip to the US.

After an agonising five-year wait in Ireland, there came a glimmer of hope with a recent consultation for the procedure. But the dream seemed to slip away when Keara Strcic, Darraghs mum, discovered that eligibility for the programme hinged upon obtaining travel cover for her son.

Despite her best efforts, insurers turned them down due to his intricate health requirements. The issue came to light during a presentation at Leinster House on Wednesday by the Spina Bifida and Hydrocephalus Paediatric Advocacy Group, where other parents expressed similar challenges.

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But the Department of Health has now clarified that the scheme covers travel insurance. In a turnabout, a spokesperson told the Irish Mirror: "Families will be fully supported in accessing these pathways if it is the right option for their children. The support package for patients travelling abroad includes flights, accommodation, transport, travel insurance for all those in the travelling party, and a subsistence rate for expenses."

Keara revealed she's still in the dark about whether travel insurance will be covered. Her concerns echo those raised in the Dail by People Before Profit TD Mick Barry, which prompted Taoiseach Simon Harris to acknowledge the issue, saying "I don't want to make a commitment on the floor of this House until I know I can honour it but let me inquire on that point directly."

Una Keightley, co-founder of the Spina Bifida and Hydrocephalus Paediatric Advocacy Group, expressed her surprise at the suggestion of state-provided travel insurance, worrying about the practicality of finding a provider willing to insure these children. She explained the harsh reality stating: "Any child who is hydrocephalus is deemed uninsurable because of having a shunt, they can still travel there but if anything happens you are on your own. Also, the majority of policies say if you are travelling for treatment that's okay, but surgery it's a different kettle of fish."

She also highlighted the lack of formal communication with parents, adding frustration to the fact that two business class tickets for two adults and one child simply isn't realistic.

She explained: "Only two of those flights are business class, so that's for one parent and one child on the way home only. They are economy for the rest of the flights. You are talking about putting a child in economy seats with a spinal curve, for some children they need to be repositioned so that they don't arrive with pressure sores into America and then can't get the surgery."

"We are also talking about children who may need assistance going to the toilet, you cannot fit two people into an economy toilet on an airplane. So, in 2024, we are looking at putting children in nappies so they can travel from Ireland to America. That's what we are looking at for services they should be able to access at home. Anyone who stands over that should be disgusted with themselves, that's what is being offered."

Little Darragh is one of the more than 300 kids across the nation waiting for spinal surgery, as he endures daily agony with a spine curved at a shocking 120 degrees. A moderate scoliosis curve measures between 25 and 40 degrees, whilst anything over 50 degrees is considered severe.

His mum admits that jetting off abroad for the op is less than perfect, especially if it's not all in business class, but she fears there might be no other choice.

She explained: "We have been waiting years for surgical intervention for his scoliosis. We have used some temporary measures in the past like bracing, but as he got older that stuff doesn't work anymore for him because his curvature has progressed so severe that there is no brace that will keep his back in place."

"I was looking to go with the outsourcing abroad initiative, I was open to that because Darragh's scoliosis is so severe that I am willing to travel as he needs immediate intervention."

In July, Health Minister Stephen Donnelly announced a plan to send kids on spinal surgery waitlists to a hospital in The Big Apple, signalling hope for many Irish families. However, there are concerns, particularly about post-operative care and financial support for families going overseas for treatment.

According to NHS guidelines, long-haul flights are a no-go for three months following spinal fusion, sparking fears over the feasibility of such trips for parentsraising the issue of continuing benefits, like carer's allowance, while abroad.

She remarked: "We have no idea what that subsistence rate is, if their child allowance or carers allowance is going to be cut off. It's a disgrace. This is a surgery that children should be able to access at home."