A CORK mother, whose son has spina bifida, has called for action to fast track children with the condition for surgical review.

Valerie Hennessy’s 13-year-old son underwent a spinal fusion procedure four years ago.

She said that at the time he was considered an emergency case and was waiting a year and a half before having the surgery in 2018.

Four years on, Ms Hennessy said the waiting lists for the surgery have increased, with some children waiting four years for the procedure.

Ms Hennessy, who is the chairperson of the Cork Spina Bifida Association, said parents want this situation to change.

“I think parents have just had enough and we’re not going to stop until it’s changed.”

She said that as a mother who found out at her child’s birth that he had spina bifida, she was thrown into a “very poor” system.

“The service was very poor to begin with in the first place and has deteriorated dramatically in the last 13 years.

“Spina bifida is a very complex condition, it affects the whole body, various parts and Ireland has the highest rate of spina bifida in the world.

“So it should really have a fully functional and operational state-of-the-art clinic for kids with Spina Bifida.” she said.

Chaotic

Ms Hennessy said that it is “chaotic in the disability world at the minute” and many children on the waiting list now.

“In the long term, it costs the state more money because the surgery is more complex and it requires more staff in the theatre. It ends up costing the country so much more money and leaving the child in a worse condition whereas if they have a system set in place and get to the child when the child needs to have it done it’s a win-win for everybody,” she said.

The comments come after city councillors agreed to write to the Minister for Health calling for the fast-tracking of children with spina bifida awaiting surgical review.

The motion was recently proposed by Councillor Eolan Ryng, Councillor Kenneth Collins and Councillor Fiona Kerins who noted that there are 82 children with Spina Bifida and/or Hydrocephalus currently requiring urgent orthopaedic intervention.

They called on the Council to write to Minister Donnelly and fast track these children for surgical review as a matter of urgency and to call on the Minister for Health to ensure that provision of services is made to disabled children within elective hospital settings as well as acute hospital settings to avoid a repeat of this situation in the future.

The motion received unanimous support.

Cllr Eolan Ryng said: “The damage and pain this delay causes can’t be underestimated. It also leads to more complex surgeries and potentially the loss of a limb.

“This is an urgent issue and needs to be treated accordingly. It’s not good enough that this is the case and we as a society need to do better.

“It was great to see that the motion received cross Council support. This means that Cork City Council will now press the matter with the Minister on behalf of the most important people in all of this; the children and their families.”

CHI statement

In a statement issued to The Echo, Children’s Health Ireland (CHI) said it is “absolutely committed to providing timely and increased access to our services, which is the single greatest operational challenge we have”.

“We have too many children and adolescents waiting too long to access care in several specialties in CHI. We sincerely apologise to those families and children waiting for a surgery.

“Unfortunately, we are operating within old and constrained infrastructure, with limited capability and all our hospitals more recently have experienced record numbers of presentations to our Emergency Departments and Urgent Care Centre, resulting in bed pressures and cancellation of admissions for elective surgery. In 2020 and 2021 our elective activity was impacted by Covid-19 and the criminal cyberattack.”

CHI said in its statement that all children in Ireland with spina bifida “will access the MDT service upon integration to the new children’s hospital”.