Girl unable to breathe at times due to five-year wait for spinal surgery, report finds

A teenage girl with cerebral palsy was forced to wait five years for spinal fusion surgery, according to a report by the Ombudsman for Children’s office (OCO).

During that time, the girl’s spinal curvature deteriorated from 30 to more than 135 degrees, the report found.

Children’s Health Ireland (CHI) failed to communicate appropriately with the girl and her family, its “poor communication” breaching procedures for managing waiting lists and engaging with patients, the investigation also found.

CHI at Temple Street hospital also failed to properly address a complaint made by the girl’s father about her care, the ombudsman said.

What now for transgender healthcare in Ireland after publication of the Cass review?

---

‘Major vulnerabilities’ in Temple Street neonatal critical care, doctors warn management

---

Neonatal project allowed ‘to slip into abeyance . . . not by an active decision but through neglect and apathy’

---

Children’s committee: App stores should be responsible for effective age verification - Meta

---

The 17-year-old, referred to as Ivy in the report, told investigators about the enormous toll caused by the uncertainty around her surgery, both physical and mental. She could not meet her friends, go to school “or even breathe at times” as the curvature worsened.

When she eventually had surgery in 2021, her pain reduced significantly and her quality of life improved.

[ ‘It’s incredibly isolating to have a child with a rare disease. It feels exhausting’ ]

The report found the administrative actions of CHI had a negative impact on Ivy’s life and made seven recommendations to address these concerns, including an audit of the waiting list for children’s scoliosis care and a change to allow for a patient or their family or GP initiate a review of their own care.

“Ivy’s story shows the devastating consequences that waiting for this life-changing surgery can have on a child,” said OCO director of investigations Nuala Ward. “When Ivy and her family came to us, after previously raising their concerns a number of times with their GP, consultant and CHI, it was clear the whole family had suffered significant distress and anguish at her deteriorating condition in the five years she had to wait for surgery.”

“A key issue we raised is that professionals must pay attention to parents, children and indeed, GPs, when they contact a hospital to say a child’s condition is deteriorating. This is vital information that should be considered when reviewing a case and must never be ignored.”

In 2017, the OCO published a highly critical report about ongoing delays in scoliosis care. The Government subsequently invested in additional staff and theatre space but a promise that no child will have to wait longer than four months for surgery has yet to be kept. Currently, 309 children are waiting for scoliosis treatment.

Ms Ward said: “We must never forget, that these children are in significant pain and distress while they wait, their life suspended, their childhood passing them by. They need to believe that the Government cares and will make right their promise to them.”

CHI said it fully accepted the report. While declining to comment on Ivy’s case, it said senior officials would meet her and her family to discuss “learnings” from the report.

Currently, 29 patients are waiting for spinal fusion surgery in Temple Street, and some have lengthy waiting times, a spokeswoman acknowledged.

Some spinal surgeries in the hospital have been paused since last year after an increase in complications was identified, The Irish Times reported earlier this month.

An external clinical review of all complex surgeries carried out in the hospital over the past three years on children with spina bifida has been commissioned from experts from Boston Children’s Hospital.