'These are not just files in Crumlin with someone's name on it, these are our kids'

Jodie Lynch, from Cork, is waiting years for essential treatment.

An advocacy group for children with spina bifida and hydrocephalus has launched a website to highlight the “páistí in pain” around the country, who are waiting years for orthopaedic and urology surgeries for disabilities which become more painful and inoperable by the day.

One of those children is 13-year-old Jodie Lynch from Cork. Jodie has spina bifida and hydrocephalus and has been waiting over a year and a half to see a neurologist in Cork University Hospital for her epilepsy and two years for urology procedures.

In the past three years, Jodie has had 18 surgeries on her back and the wound from her latest surgery 11 months ago is still open. Until Christmas, she had spent six months sitting forward in a wheelchair that did not fit, as a hole had to be cut in the back of the chair to relieve pressure from her open wound.

Jodie’s mother Amy said it has been almost 14 years of waiting, fighting, and paperwork, all the while being terrified that the healthcare Jodie does get will not be enough or will not be in time.

“Some of these conditions, they can kill our kids," said Amy. "It's frightening but it has happened. 

"Her epilepsy, the way her spine was could have crushed her heart and lungs. Jodie got sepsis in her brain when she was about six, that nearly killed her; she has a heart murmur, it's been stable for years upon years but I've noticed lately she's going blue. The doctors all say, ‘sure look, we'll see you in six months’, but they don't. I'm nearly 14 years of doing this, and sometimes it just blows my mind.” 

Ms Lynch said that Jodie and all children waiting on life-changing surgeries and critical treatment are more than just a statistic.

“These are our children. They're our teenagers. They're our new babies. 

They need these services and they are not getting them, and they are falling behind in life. 

"These are just not files in Crumlin with someone's name on it, these are our kids and these delays can actually really do damage,” she said.

On Thursday, the Spina Bifida and Hydrocephalus Paediatric Advocacy Group (SBHPAG) launched its campaign website (http://www.sbhpag.com/), which features the case profiles of 71 children who are awaiting treatment.

Speaking at the launch of the website, SBHPAG co-leads Amanda Coughlan-Santry and Úna Keightley said: “We have watched these children suffer long enough. Our children have the most amazing care teams. But they need to get access to this care now. 

"We hope this website and campaign will shine a light on their suffering, and we are asking people to read their stories and to insist that services are adequately resourced for these children.” 

SBHPAG has called for the immediate establishment of a register of spina bifida/hydrocephalus children in the care of Children’s Health Ireland, a review of the medical care and treatment needed by all children on the register, and annual access to a multi-disciplinary clinic for all children.

The group is also calling for the development and standardisation of transition pathways from paediatric care to adult spina bifida care, adequate resourcing of services, and €5.1m for Cappagh Hospital to increase orthopaedic surgical capacity by 400% for children with complex needs.