SPINA BIFIDA & HYDROCEPHALUS PAEDIATRIC ADVOCACY GROUP
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T.J. age 17 from Offaly

  • Has spent the majority of his life on waiting lists within the Irish health system.
  • No access to Spina bifida multidisciplinary team (MDT) clinic in  Children's Health Ireland (CHI) at Temple Street, despite repeated requests from his mother.
  • Waited 2.5 years for spinal assessment for scoliosis. Unfortunately, during this time period his scoliosis progressed and is now inoperable .
  • Acquired a life altering brain injury since shunt revision surgery in 2019.
  • Waited 2 years to access paediatric rehabilitation unit in the National Rehabilitation Hospital (NRH).
  • His care is frequently split across 4 hospitals, due to not having access to the Spina bifida MDT.
  • Currently transitioning to adult services with no support from CHI.
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