Parents meet with politicians over lack of adequate children's healthcare

Amanda Coughlan Santry is co-founder of the Spina Bifida Hydrocephalus Paediatric Advocacy Group. Picture: Gareth Chaney/Collins

Parents of children with spina bifida and scoliosis meet politicians today and will call for promises of reform in children’s care to be acted upon.

Families are hoping a renewed political focus on services following the tragic death of Harvey Morrison Sherratt will bring more action.

Harvey, who was nine, had scoliosis and spina bifida and waited years for spinal surgery. During this time, the curve in his spine went from 75 degrees to 130 degrees.

However, by the time of his surgery last December, the curve had reached a point where it was not possible to fully correct it. Harvey died on July 29.

Amanda Coughlan Santry is co-founder of the Spina Bifida Hydrocephalus Paediatric Advocacy Group. 

She said: “They are only listening to us now, and unfortunately, it took the loss of Harvey for the problems to become apparent to the Government.” 

Referring to an inquiry promised by the health minister, she said: “We’re cautiously optimistic about the inquiry, but we stiFll have to sit down and discuss the type of inquiry it will be.” 

The Leinster House meeting is hosted by senator Tom Clonan. Invitations went to politicians in all parties.

We have videos to show children’s lived experiences, we’re going to show videos of the lack of care these young adults and children have.

She pointed out that while the public focus is on surgeries, a lack of everyday services is an unseen crisis.

“The system is broken, the system is on fire,” she said. “Not only are we not protecting the people who need the services, we are not protecting the staff who work in the services.” 

Amanda O’Sullivan met senior staff in Children's Health Ireland (CHI) to talk about her daughter’s care two weeks ago. 

Amanda and Paul O’Sullivan’s daughter and son, Analla and Braoc, both  have Ehlers-Danlos syndrome.  

Analla has hypermobile Ehlers-Danlos Syndrome. Scoliosis is a common part of this condition.

The little girl had successful surgery last November. However, her parents want to know why her worsening spinal curve was not recognised earlier.

Ms O’Sullivan said health records show “six times over 11 months “ when the curve either could have been recognised or was seen but not acted upon.

“In fairness, (the surgeon) was handed a child with a 52-degree curve, there was nothing else he could do at that stage,” she said.

“But our argument constantly was if we’d been told a year beforehand, we would have brought her to him earlier or to somebody and got her monitored. She could have avoided surgery.” 

Just last week, her son Braoc, who has the same condition as his sister, was also diagnosed with scoliosis. She and her husband Paul cried when they saw the X-rays.

“We are continuing on this journey,” she said.

The meeting with CHI covered “omissions, lack in communications, transparency issues, and failures in management and care”, she said.

She welcomed feedback from the people she met, but now wants to see change.

She was told by CHI that Analla’s case was “an isolated incident”, but questions remain for the family. 

“How many other kids has this happened to?” she said.

Her instinct with their son’s care was to go private and have him assessed for treatment called 'bracing', in hopes of avoiding surgery.

CHI cannot comment on individual cases. It has committed to implementing recommendations in recent reports.