Amy, Tina, Colleen and Bob O'Kelly at Colleen's 21st birthday party last year. Photo: Aishling Conway
Naas mum Tina O’Kelly told the heartbreaking story of her daughter Colleen’s wait for scoliosis surgery - and her own frustrating battles with the HSE - on RTÉ’s Liveline today.
Colleen, who is now 21, has special needs as a result of genetic disorder Joubert Syndrome. She has the intellectual development of a three year old, is a wheelchair user and has received a kidney transplant.
She also suffers from severe scoliosis - which has been seriously worsened by the waiting list crisis.
Her spine is currently at a 97% curve and is completely lying on one of her lungs, which increases the risk of pneumonia, recurring chest infections or a collapsed lung. She has been seriously ill with vomiting for the past few months, to the extent that her mother has had to withdraw her from day services to nurse her.
Tina heartbreakingly told radio host Joe Duffy that her daughter - who communicates with sign language - “cannot tell me the pain she is in”. She did the “sign for mama, and the sign for hospital”.
“She has been in pain for so long it’s part of her life now”.
Listen to Tina on Liveline, and continue reading, below...
Audio via RTE/Liveline
Colleen, who was not expected to live past her early childhood, celebrated her 21st birthday with a huge party in the Town House Hotel in Naas last September, with her mum, dad Bob and sister Amy. A brother, Joshua, sadly passed away from the same condition. The family live at the Caragh Road in Naas, and Tina is well-known in the town through her involvement in Naas Musical Society and, lately, the Naas Against Authority Sabotage action group.
Shockingly, when Colleen reached the age of 18 she was “turfed out of Crumlin”, as her mother phrases it. The children’s hospital had been over all aspects of her care since she was an infant.
Her doctor at the children’s hospital in Crumlin wrote a letter to himself to refer her to his list in Tallaght Hospital.
But the family was told that this was not a simple transfer to an adult hospital. Colleen had to rejoin the waiting list for an appointment for her scoliosis and had a two-year wait before she could even get an X-Ray.
Tina described vividly to Liveline the experience of seeing her daughter’s X Ray. “I could see her spine on the X-Ray and my first words were ‘Jesus Christ’,” she said, describing it as “like a backwards question mark, and the arc of the spine is sitting on her lung.”
Tina said she “shudders to think” of the amount of money her daughter’s care has cost the State, in terms of the kidney transplant, but says it is all being compromised because Colleen is being driven into serious ill health due to her scoliosis.
Broadcaster Joe Duffy was talked to the mothers of several youngsters waiting for surgery, and was reduced to tears at their plight.