'We can see her deteriorating': Families say up to 300 children with spina bifida on waiting lists 

Sophe Keogh, 10, and her mother Emma Keogh. Sophie is waiting on corrective surgery for spina bifida.

There are more children waiting for spina bifida treatment than the official waiting lists show, an advocacy group for families has claimed.

It emerged at the weekend that 56 children with spina bifida are waiting for orthopaedic surgery, out of a total of 649 children on an orthopaedic waiting list. The figure was contained in a statement issued by Children’s Health Ireland to RTÉ. 

However, Amanda Coughlan-Santry from the Spina Bifida Paediatric Advocacy Group said there could be many as 300 children with the condition waiting for different types of surgery.

“We would dispute the figures because there is no collective database in CHI for our children,” she said. “These figures only count children waiting for orthopaedic surgery, but urology is another main issue. The consultants are massively under-resourced.” 

She is aware of at least one family referred to urology services at the Royal Belfast Hospital for Sick Children due to the shortage of consultants in Ireland. The referral letter said: “We are waiting for the urology situation down here in Dublin to resolve.” 

Sophie has one leg shorter than the other. This was operated on when she was six but the gap has grown again to 3cm.

Limerick mother Emma Keogh explained how her 10-year-old daughter Sophie is waiting for spina bifida treatment. Sophie has one leg shorter than the other. This was operated on when she was six but the gap has grown again to 3cm.

In September the medical team in CHI at Temple Street said Sophie needs further surgery.

“We were told it will be done at some point in 2022, it’s planned for 2022 but we don’t know if it will be done,” Ms Keogh said.

She is extremely frustrated that her sports-loving daughter’s care is seen as ‘elective’ when it is not a choice.

“While she is waiting, she is putting strain on her ‘good’ leg, there is wear and tear on her joints,” she said. “She is in pain now, we can see her deteriorating” 

Ms Keogh said they cannot travel to the North because the surgery involves a frame around Sophie’s leg with struts going into the bone, which must be twisted at home by the family, with weekly X-ray check-ups.

Paediatric orthopaedic surgeon Connor Green told RTÉ a more sustainable model of care is needed.

“56 [children] is what I understand has been estimated, I couldn’t tell you if that is accurate, it is quite difficult to get accurate figures from the system,” he said.

He called for “more resources” for the all-elective hospital Cappagh Kids, where this type of surgery is not delayed by emergency needs as it is in other hospitals.