A SEVEN-year-old boy from Limerick has had his scoliosis surgery cancelled for the third time this year, only days after his mother told her son’s hospital that “time is rapidly running out” for him to stay alive.
Young Noah Quish’s ribcage is squeezing his lungs more and more every day because of a “massive curve” growing on his spine, which was first diagnosed five years ago.
Noah, from Monaleen, has extremely complex health conditions. He was born with a heart condition, hydrocephalus (fluid on the brain), a chromosome deletion, laryngomalacia (voice box defect), he is non-verbal and is fed via a tube inserted in his abdomen.
Noah’s mother, Una Quish, said her son’s scoliosis surgery was already cancelled twice this year because his surgeon was not available. It was cancelled on a further three previous occasions last year when Noah was too ill to attend for the surgery.
The young boy also underwent six brain surgeries between last July and December last year after he contracted meningitis when a ventriculoperitoneal (VP) shunt inserted in his head to drain fluid from his brain became infected.
Noah recovered from the serious infection, but on March 1 this year, Ms Quish shared in newspaper articles how her son was still waiting for a date for scoliosis surgery.
In an email sent to Crumlin Children’s Hospital on March 4, seen by the Limerick Post, Ms Quish told the hospital: “Noah’s organs are being distorted, his weight is decreasing, his lung function is being affected, and he is in pain”.
“We feel that time is rapidly running out for Noah and he needs his spinal surgery now.”
Ms Quish stated in her email to Crumlin that, due to Noah’s complex health conditions, she had been advised that “a neurosurgeon should be physically present” during Noah’s scoliosis surgery. The mother asked the hospital if a neurosurgeon would be present whenever Noah would receive his scoliosis surgery, but said she did not receive a specific reply.
She also asked Crumlin “how frequently and who from the neurosurgical team will monitor and assess Noah post-operatively as an inpatient in the days/weeks after he is admitted following his scoliosis surgery”.
Ms Quish asked Crumlin for her son’s latest Cobb angle (degree of curvature) and enquired if “plastic surgery would be needed for Noah’s wound closure, given the extent of his curvature”.
“It is some time since Noah’s pre-operative assessment was conducted. Please advise if this is to be redone to have a more up-to-date medical overview of Noah,” the mother wrote.
Ms Quish said a Crumlin representative contacted her on March 6 telling her that Noah’s surgery had been scheduled to take place on March 13. However, Ms Quish said that on March 7, the hospital informed her that the surgery had been cancelled and that she could discuss any concerns she might have had about her son’s surgery during an outpatient’s appointment – which she is still waiting a date for.
Ms Quish said Noah would have been the first Irish child with a shunt in two years that would have undergone scoliosis surgery.
“Crumlin said it sounded like we had a lot of concerns and the surgeon reckoned that it would be better if we all had a chat before it went ahead with the surgery, they never mentioned the neurosurgeon.”
Ms Quish said she never asked for her son’s surgery to be cancelled and she was adamant that Noah, who is one of hundreds of kids waiting years for scoliosis surgery, was ready to have his operation on March 13.
“I had everything prepared, we were so ready. Noah is now suffering, things are getting worse and he needs this surgery,” she said.
“His knees are swollen, he actually has bursitis (inflammation) of the knees, and it’s all because of his spine.”
Ms Quish said she and her husband, John-Joe, are now considering traveling abroad for Noah’s surgery, but there is lengthy post operative care associated with scoliosis surgery for children with other complex health conditions.
She said she is angry at the estimated €20million spent on last week’s Family and Care referenda, which were heavily defeated, while at the same time Minister for Health Stephen Donnelly recently sent in HSE auditors to Children’s Health Ireland (Crumlin and Temple Street Children’s hospitals) to clarify how €19m in funding he allocated to CHI to cut children’s scoliosis surgical waiting lists was spent.
CHI did not respond for comment at time of going to print.
