Wednesday 25 April 2018

'Why did TJ wait 21 months? - Now it's too late for surgery'

Amanda Coughlan and her son TJ (12), holding his dog Cookie, at their home in Tullamore, Co Offaly. Photo: James Flynn/APX
Amanda Coughlan and her son TJ (12), holding his dog Cookie, at their home in Tullamore, Co Offaly. Photo: James Flynn/APX
Eilish O'Regan

Eilish O'Regan

A mother whose son was on a waiting list to see a surgeon for a year and nine months has spoken of her devastation on being told his painful spinal condition is now inoperable.

Amanda Coughlan, from Tullamore, said accessing proper care for 12-year-old TJ, who is in a wheelchair and has scoliosis - a twisting of the spine - is a constant battle.

"We were referred to an orthopaedic clinic in Our Lady's Hospital, Crumlin in early 2015, but did not see a surgeon until October 2016," she said. "Why was my son not seen for so long?"

TJ is among hundreds of children who have scoliosis which causes pain and, if left uncorrected, affects internal organs, including the lungs.

Amanda said she is left agonising over whether the delay led to TJ's surgery becoming inoperable and, after more pressure, has eventually secured a second opinion at Temple Street Hospital.

Read more: Operation would fix me so why can't it be done? asks Megan (13)

TJ was born with spina bifida and hydrocephalus - excess fluid in the brain. He has just one functioning kidney and he has also developed osteoporosis.

"TJ was born with scoliosis," Amanda said. "Why was he not monitored before he became inoperable? Why wasn't he on a watch list? We are in this limbo because hospitals are not being resourced properly."

TJ was taken to hospital on 41 occasions in 2015 and had been admitted five times - but no alert was raised about his deteriorating spine.

Amanda said: "My son deserves the best care, but I have to fight tooth and nail for everything for him.

"TJ has two curvatures on his spine. The higher curve is very slight and does not meet the criteria for an operation. But the bottom curve is unfortunately fused, and that is the reason we were told surgery is no longer an option.

"We spend our lives missing parties and other celebrations because we live on a waiting list.

"And when the call comes, we have to jump, because if we sit, the condition will deteriorate."

The devoted mother said she would like to tell Health Minister Simon Harris that the health system is "failing my child on your watch".

"Pay our nurses, because they earn every penny, entice our world class and highly sought-after medical staff home," she said. "Give our surgeons the time, tools and staff they need to safeguard the future of this country - our children."

She added: "Don't isolate parents and carers like me, because we are some of the most resilient and hardworking people you will ever meet. We are the ones you want on your side, because where our children are concerned, we will never be silent."

Irish Independent

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