Olivia White, from Mallow, Co Cork, is currently in Cork University Hospital (CUH) with double pneumonia.
Her mother, Monica, said a pocket of Olivia’s lung is being compressed by her deformed spine and is prone to filling with fluid, and unless it is resolved, she faces repeated hospitalisation.
She said they had “several scares” during the week when Olivia deteriorated to the point where they thought they might lose her. Monica said her daughter’s curve started out at 13 degrees and is now at more than 70 degrees. She said they are considering suing the HSE for the harm caused on foot of treatment delays.
Correspondence seen by the Irish Examiner shows Olivia is not listed for an MRI until April 2, 2019.
The correspondence, from the spinal disorders unit at Our Lady’s Children’s Hospital, Crumlin, also says the multi-disciplinary team meetings, where complex cases like Olivia’s are discussed, “are very backed up at present”.
Monica said the manner in which the HSE manages the scoliosis waiting list keeps people like Olivia off the list because she has to be deemed to require surgery, and an MRI is part of the diagnostics preparation for surgery.
Monica said she is happy to pay to have an MRI done privately, but remains concerned that Olivia will still have to wait for surgery.
She said she would also consider travelling overseas for treatment.
Olivia has Rett syndrome, a rare neurological and developmental disorder that leaves her fully dependent on her family for the most basic of tasks .
Consultant paediatric orthopaedic surgeon Pat Kiely, who carries out spinal surgery in Crumlin Hospital, said “there are sometimes backlogs [in relation to MRIs] that slow down the surgery date, and that’s a frustration”.
He said it was “a fact” that they encounter patients they would like to operate on, but surgery was delayed while patients waited for investigations.
Olivia requires a general anaesthetic to undergo an MRI, and Mr Kiely said very few hospitals do MRIs under general anaesthetic.
Asked by the Irish Examiner if the HSE is massaging scoliosis waiting list figures to keep the numbers down, a spokesperson for the Children’s Hospital Group said: “If a patient is clinically deemed suitable for surgery they are added to the waiting list”.
The spokesperson said: “If a child is deteriorating and needs surgery, the patient will be prioritised for an MRI scan.”