Irish mother forced to beg for son's life as he waits overs 14 months for spinal fusion surgery
This is simply unacceptable.
In Ireland, one of the most prosperous countries in the world, a mother has been forced to beg for her child's life.
Brendan, a 13-year-old boy with scoliosis, as well as cerebral palsy, has been on the "urgent" waiting list for vital spinal fusion surgery for over 14 months.
On Thursday night, Brendan's mother Tracy took to Twitter to share photos of the increasing damage Brendan is enduring as he waits endlessly for the surgery at the Children's Hospital in Crumlin.
Tracy spoke to JOE to describe just how agonising the last 14 months have been.
"If you or I had scoliosis, that would be hard enough," Tracy said.
"But if you had no muscles, in your abdomen, your back, your sides to fight against the curve — that's Brendan. He's literally being crushed to death.
"His internal organs, his lungs, his bottom ribs are hitting the top of his pelvic bone."
THREAD:
This evening, as I was afraid would happen, the crease in Brendan's side/back from #scoliosis has now seen the skin begin to breakdown with an open wound. I am absolutely gutted - and raging. This should not have gotten this far @SimonHarrisTD @FinianMcGrathTD @HSELive! pic.twitter.com/xKQjsWZXhh— Tracy 💜 ☮️📸 ✍🏼🏠🇮🇪 ❤️🇳🇴 (@AddressingLife) August 16, 2018
"He was first placed on the urgent, I laugh, "urgent," waiting list on 1 June, 2017." Over 14 months ago.
Asked how the healthcare system justifies this waiting times, Tracy sighs hard.
"At an appointment in May, it was said that he would have his surgery in most likely July, and if everything went well, he'd be ready for the start of school this autumn" Tracy said.
"July didn't happen. I was told, it being summer, there were a lot of sports injuries, emergencies, that kind of thing, that bumped scheduled surgeries. But Brendan was never even scheduled in the first place. They just haven't put him on the schedule.
"We need to ask why and demand different. Something's gone wrong, obviously. It's massively dysfunctional, massively so. It's inhumane. This is neglect.
"He's a severely disabled child, you can't get more vulnerable in society, than a severely disabled, non-verbal child who is 100% dependent on every single care in his life, 24/7. And this is how he's been treated. And that is an indictment on those that have the power to make things different."
I will NOT see him wait any longer. This is inhumane and cruel. Book the op theatre, book the required staff, and lets get this done to save his life. He IS worth saving, so please, save him! I cannot beg anymore than I have. I will look to hear from you tomorrow. @OCO_ireland
— Tracy 💜 ☮️📸 ✍🏼🏠🇮🇪 ❤️🇳🇴 (@AddressingLife) August 16, 2018
On Minister for Health Simon Harris, Tracy says he won't reply to her emails directly. On Minister for Disability Issues, Finian McGrath, Tracy says he has not replied once to her, even though he has met Brendan before.
Tracy is now waiting on the outcome of a special meeting that has been called at the hospital to discuss Brendan's case, after 14 months of waiting.
"It wouldn't have happened without the pressure. I would still be waiting. If I hadn't put the pressure on directly, which I hate doing, nobody should have to do it. Posting pictures of their child for the public to see, especially in a vulnerable and painful situation. God. No parent wants to do that. But it seems to be the only way to get them to do something that they should be doing in the first place."
Tracy notes that the compression of Brendan's body has begun to force wounds to open — which would disqualify him from surgery. This means that by waiting so long to act, the healthcare system may have made it even harder to operate on Brendan.
Drastic waiting lists have become par for the course in the Irish public healthcare system. "Over 14 months on an urgent waiting list," Tracy says. "That doesn't make sense."
"That's part of the problem. We need to not be used to it. We can't wait until it affects someone we love. We all have to be outraged by it for it to change."
There is currently a Go Fund Me page to help Tracy pay for suitable accommodation for Brendan, which is almost halfway towards its goal.
"Brendan requires a properly equipped, suitably modified bungalow for his lone-parent mother to safely continue her full time 24/7 care of him, especially when that operation is completed," the Go Fund Me page says.
"Brendan, his younger brother Declan, and their mum Tracy currently live in a rental home that doesn’t meet those requirements. There is no suitable social housing available and the wait list is years long."
UPDATE: Tracy has confirmed that Brendan has been given a tentative date of October 8 for the spinal fusion survey, as a direct result of the social media pressure applied over the last 24 hours.
This will partially depend on an anaesthesia review which will take place on Monday.
UPDATE THREAD:
Brendan's spinal fusion op date has TENTATIVELY been set for October 8th. Tentatively because he could get bumped if there is an emergency, for example. That still leaves another 2 months (8 wks) trying to keep him fit & healthy for surgery. It will be hard to do.— Tracy 💜 ☮️📸 ✍🏼🏠🇮🇪 ❤️🇳🇴 (@AddressingLife) August 17, 2018
Was just told that the anesthesia review happening this Monday is the most important pre-op important. The anesthesiologist has the final say as to if the operation can go ahead or not. That's my nerves shot now 😳 https://t.co/iQ8H4S4qad
— Tracy 💜 ☮️📸 ✍🏼🏠🇮🇪 ❤️🇳🇴 (@AddressingLife) August 17, 2018
