The family of a seven-year-old Limerick boy have said they are considering travelling abroad for treatment, after the child had his scoliosis surgery cancelled for a third time this year.
Noah Quish, from Monaleen in Limerick, has complex health conditions, and his ribcage is increasingly squeezing his lungs due to a large curve growing on his spine – which was first diagnosed five years ago, when the child was just two years old.
Noah’s parents, Una and John Joe Quish, say they are worried that time is running out for their son to stay alive – over fears that the curve on Noah’s spine, which is slowly crushing his organs, will eventually kill him.
Noah, who has severe scoliosis, was born with a heart condition along with hydrocephalus (fluid on the brain) and also suffers from laryngomalacia (a defect of the voice box) and a chromosome deletion. He is non-verbal, and is fed through a tube inserted into his abdomen as he cannot swallow properly.
The little boy has earned the title ‘Limerick’s Little Blue Hero,’ and defied all odds to start school in September 2020. At four months old, he had open heart surgery, after being given little chance of survival at birth. The child has had numerous serious surgeries in his seven short years of life.
Noah’s mother Úna Quish told Gript that the family feel let down by the government, adding she believes the daily are in the worst position they have ever been in, despite repeated promises.
Noah’s parents are now seeking answers from Children’s Health Ireland about why the surgery was cancelled. In email correspondence sent to Crumlin’s Hospital on March 4 and seen by Gript, Noah’s mother Una and father John-Joe penned that their son has waited years on intervention, and has a “massive curvature” of over 100 degrees. The child’s weight is decreasing, while his organs are being distorted. His lung function is being affected, and he is in pain.
Noah’s scoliosis surgery has been cancelled a number of times because he has been too sick. However, now, although the child is considered well enough for the operation, there has been no confirmed date given.
Noah’s family received a surgical date for February 2024 but this was cancelled due to unforeseen circumstances with the surgeon. The family say they were later given a date for the surgery earlier this month – a week before Noah’s seventh birthday – but this was also cancelled. Noah’s parents say there has been no date provided for the surgery since the last cancellation, leaving Noah in limbo.
Una has put a series of questions to Children’s Health Ireland (CHI) and have asked CHI to confirm that a neurosurgeon will be physically present, as it was advised that the child has a shunt and a complicated neurological history, meaning a neurosurgeon should be physically present in Crumlin during the surgery.
The family also say that children newly diagnosed with idiopathic scoliosis with minor curvatures (of a much lesser degree than Noah) are being given surgical intervention before Noah.
Una also said that it is now some time since the child’s preoperative assessment was conducted, and they have asked CHI if this will be redone in order to gain a more up-to-date medical overview of Noah.
Noah’s mother says the family feel that “time is rapidly running out for Noah,” and that the child needs his spinal surgery now.
“I have heard all the apologies about wait times,” Noah’s mother Una said, adding that the family want a date for her son’s spinal surgery, something that Noah “desperately needs.”
To date, the family say they have received no response from Children’s Health Ireland.
According to the worried family, Noah’s scoliosis surgery was cancelled twice at the beginning of this year because Noah’s surgeon was not available to perform the procedure. It was cancelled a further three times last year because the child was too ill to attend the surgery.
Young Noah underwent six brain surgeries between July and December 2023, after he developed meningitis when a ventriculoperitoneal (VP) shunt was inserted into his head to drain fluid, and his brain became affected. While the little boy has recovered from the serious infection, the family are still waiting for a date for his scoliosis surgery.
”This time around, Noah’s surgery was cancelled as I had sent an email a few days previous asking if there would be a neurosurgeon in theatre when Noah would have his spinal surgery, because the chances of the shunt malfunctioning are high given that he had serious complications during brain surgery,” Una told Gript.
“Once the hospital received that email, they rang and said the surgeon has cancelled the surgery given we had a lot of concern. The hospital told us they thought it would be a good idea to hold a meeting, so I would receive an outpatients appointment in the post.
“We already had an outpatient appointment scheduled for three days later. I enquired if that meeting would just be about having a chat, and I was told that all appointments regarding Noah had been cancelled – and that we would get a date for an appointment in the post,” she explained.
Una said the family were surprised when they received a call later that week, on the day the outpatient appointment should have been held, asking why they did not attend.
“I told the hospital we were specifically asked not to attend, and we were told it was cancelled. I was then told again to wait for a new date. I found it all a bit off, because even if I had concerns, surely the surgeon had considered all of this, and was happy to proceed, given that he had given us a date. We also considered if the hospital were ever going to perform the surgery in the first place?”
Una says the family are considering travelling abroad, but say they will still attend Crumlin Hospital once they are given a date to discuss the options available to them. Una says that despite media coverage dating back four years, and promises from multiple politicians, the family feel they are now in a worse position than ever.
The devoted mother has warned Children’s Health Ireland, which runs both Crumlin and Temple Street, that if they do not address “crippling” waiting lists, children like Noah will continue to suffer.
Una has also said that Noah has been unable to access physiotherapy, which he requires due to the pain caused by the scoliosis. This, she says, is due to a lack of resources in the Mid-West region.
“We really feel let down by the government,” Una said. “I was on the Claire Byrne show four years ago about Noah’s scoliosis and the delay in getting his much-needed cast to prevent what’s happening today, because a 10 month delay has resulted in Noah needed spinal surgery now.
“Stephen Donnelly and Simon Harris were on the show and now health Minister Stephen Donnelly promised that they were working on the scoliosis crisis, and that within two to three years there wouldn’t be any children waiting for spinal surgery. But look where we are now. Things are worse than ever before. These children are now faced with crippling waiting lists.”
Una also hit out at the government for spending €20 million on a referendum campaign, when the money could have been better used.
“So much money had been wasted on an unnecessary referendum. This money would have gone a long way towards our kids and sick people. I’m not blaming the surgeons and doctors for what is happening at all. They are obviously at breaking point and trying their best to get through the waiting lists. It’s completely unfair that they have to deal with the shortcomings of our government.”
Children’s Health Ireland have been contacted by Gript for comment.