Children with spina bifida losing ability to walk while on 'abhorrent waiting lists'
Amanda Coughlan Santry, spokeswoman for a support group for families of children with spina bifida and hydrocephalus, with her son TJ, 16. Picture: Ray Ryan
Parents of children with spina bifida who are losing the ability to walk while on “abhorrent waiting lists” have written to the health minister begging for immediate action.
Spina bifida is a type of neural tube defect which has been described as “one of the most complex congenital conditions compatible with life”. Ireland has one of the highest rates of neural tube defects in the world.
A group of 70 parents is now calling for long-promised improvements to care, saying they were devastated by presentations to the Oireachtas health committee last week on children’s spinal health.
“Children who have the ability to walk are losing or have lost that ability due to the absence of timely surgical management,” the letter states.
“Others who are manual wheelchair users, due to the same issue, are unable to self-propel themselves effectively, leaving them paralysed. Among us, we are documenting and gathering evidence of our children’s diminishing physical abatement and contorting limbs.”
The letter, addressing Stephen Donnelly directly, states: “You are acutely aware of the abhorrent waiting list for paediatric orthopaedic care and that the Health Service Executive is failing to provide timely care to children.”
It adds: “For our children who already have an abnormality of the spine and/or brain stem, the current situation is dire.”
Children, in many cases, are becoming “maimed and deformed before our eyes,” the letter says.
It also says these delays have gone on for many years, and are not only due to slowdowns caused by the pandemic or the cyberattack on the HSE.
It references a 2014 report, 'The Health and Therapy Needs of Children with Spina Bifida in Ireland', which found only 46% of children can access the specialist clinic at Temple Street [children's hospital], and that not all those who did have access were reviewed annually “due to inadequate resources and staffing levels”.
The letter references historical neglect also, noting reports on mother and baby homes highlight incidences of babies with spina bifida who were not cared for properly.
Amanda Coughlan-Santry, the spokeswoman for the group, is very familiar with these challenges, as her 16-year-old son TJ has spina bifida and hydrocephalus.
The Offaly woman said the key message they want decision-makers to hear is: “We implore you to execute an iron-clad, achievable and rapid solution for our children."
A spokeswoman for CHI Temple Street said on Tuesday specialist clinics were doubled to four per month this year which means each child gets an annual review.
“CHI has submitted proposals to the HSE to address waiting times and these are at an advanced stage of approval,” she said.
The spokeswoman said the hospital is aware that each number on the list represents “ a unique child, a family”.
“CHI 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 specialities in CHI,” she said.
“In 2020 and 2021 our elective activity was impacted by COVID-19 and the criminal cyberattack. We sincerely apologise to those families and children waiting for care.”
The CHI Temple Street spokeswoman said all newborns in Ireland diagnosed with spina bifida are cared for in Temple Street after birth, then families are linked up with local services and followed up on in the specialist clinic at the hospital.
She said: “There are children and adolescents with spina bifida related conditions being treated under multiple specialists.”
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