‘I hate not knowing’ – Galway boy, 14, issues desperate plea for scoliosis op as mum reveals worst fear in wait hell | KMW003E | 2024-05-01 00:08:01
'I hate not knowing' – Galway boy, 14, issues desperate plea for scoliosis op as mum reveals worst fear in wait hell | KMW003E | 2024-05-01 00:08:01
THE mum of a 14-year-old boy left waiting FOUR YEARS for spinal surgery has told how the health system has "failed" her lad.
Paddy Murphy, who lives in Headford, Co Galway has spina bifida and scoliosis and was told back in 2020 that he would require spinal surgery to correct the curve in his back.
But since then, the curve in his spine has gotten worse and is now at 100 degrees — making it hard for the youngster to push his wheelchair.
Mum Megan said: "He knows well how much he's been let down and how much he's been failed."
And Paddy, who loves to play wheelchair basketball with the Galway Speeders, yesterday told The Irish Sun: "It's not fair."
Our Kids Can't Wait campaign is calling on the Government to fix waiting lists so children like Paddy get their much-needed ops ASAP.
The curve in Paddy's spine is causing him pain and discomfort.
But a doctor recently told Paddy and his family that it has progressed so much they are unsure whether he should still get surgery.
The medic told them they fear the operation could cause complications because his curve is not typical.
And Paddy, whose worsening condition is making it more difficult for him to move his chair and play wheelchair basketball, is fed up.
He told us: "I'm annoyed, I hate not knowing now if I have been left too long; if I need it I just want to get it over with.
"I can't believe I have a 100-degree curve. I'm trying to be active for my health and my lungs are not working properly and it's hard to push my chair. It's not fair."
<!-- End of Brightcove Player --> Mum Megan believes that if her son had the surgery even two years ago then he would be fine.
But as they now worry about Paddy losing his movement, she declared: "There was nothing done and this is where we are at now."
He turns 15 shortly and Megan is terrified that he will age out of the Children's Health Ireland system and end up on a completely different waiting list in the adult hospitals.
She said: "If he had had regular interventions, regular appointments, regular X-rays, regular appointments with the orthopaedic surgeons — then he would absolutely have had the right care that he would have needed at the right time and he hasn't had that.
"So now, Paddy is almost 15 so the fear for us is that he's going to age out.
"Paddy would probably be one of the oldest on the spina bifida list and what CHI promised me last year is that they would send Paddy to The Portland Hospital in London.
"We didn't want to have to go abroad but the way things are we were willing to take anything with both hands and use it as a second opinion so we jumped at the chance."
Last August, Health Minister Stephen Donnelly ordered the HSE to examine sending Irish children abroad for spinal surgeries as they were being left to wait too long in Ireland.
And earlier this month, Taoiseach Simon Harris informed the Dail the new clinical lead for the CHI spinal surgery team, Dr David Moore, was looking at sending children abroad for surgeries.
However, Megan and Paddy were told last year that he would be sent to the UK capital in January.
Cancellations and delays
But this still hasn't happened — with their London appointment repeatedly cancelled and delayed.
Megan said: "They told us that they had the treatment abroad forms sent off and they have everything done and they told us we would be out there for January this year. I've emailed, contacted them and I finally got a reply from CHI that the doctor is actually on leave and is not due back until the end of April so I still have no answers as to where we are.
"More false promises, more getting our hopes up for nothing. I'm still hanging on to hope that it is going to happen but I just don't know."
Megan was initially worried about sending her son abroad for such surgery and asked a surgeon at a recent consultation in Dublin what would happen if they wanted to wait for the operation in Ireland.
</div> </div> She said: "I asked him straight out, if it is a thing that if we do get to Portland for surgery, what if I want my child to stay in this country to have his care and surgery here.
"He looked at my son and he said to him: 'I have to be honest with you, I might never get to you because I would have to prioritise more over you because there's a lot of children that are a lot worse off than you.'"
She added: "I know the families that are waiting and I know the agony that a lot of the kids are in.
"Paddy has pain and discomfort but there are children that are so much more worse off than him.
'Our second opinion'
"I know there were going to be kids prioritised over him. Paddy knows that — he's very intelligent and he's old enough to know. I am hanging on to Portland to hope this will be our second opinion.
"Hopefully we can get the surgery in London then too because Paddy would be quite healthy in the sense that he is still in the manual chair.
"Regular day-to-day pain relief is working for him at the minute and the way his curve is now it is not causing him agony. He's functioning, so he would be classified as fit and healthy enough to go across for surgery abroad, and the care would be here then afterwards."
Paddy is in secondary school and his mum describes him as a typical teenager that loves basketball and plays the drums.
<!--googleoff: all--> <blockquote class="article__quote"> </blockquote> <!--googleon: all--> However, his condition impacts his ability to play basketball as he has recently had to move from a light wheelchair to a heavy moulded back rest which makes it more difficult to move around.
Megan said: "He never complains. He's the most easy going teenager I've ever come across. He knows if he has to get the surgery, he has to get it and if he doesn't he's just going to get on with it."
Asked about what she thinks of the health system, Megan is furious nothing has been done to end the wait list nightmare for kids — even after then Health Minister Simon Harris's 2017 promise no child would wait longer than four months for spinal surgery.
Earlier this month, The Irish Sun pressed the new Taoiseach on his broken promise to kids from 2017.
'Words mean nothing'
He promised to work with Minister Donnelly to "make sure that no child finds themselves in a scenario where they are waiting in pain and agony".
Asked what she thought of the Taoiseach's new promise, Megan said: "It is a fantastic comment. I just hope he can follow up on it. What more can anyone say to that? If he delivers on that, I think we will all be very happy but words mean nothing to us anymore as parents. They mean nothing.
"Actions speak louder than words and we have to see the actions because we haven't seen any of them yet. All we can do is hang on to hope every single day because if we don't have hope, we've nothing."
More >> https://ift.tt/3lK2IZV Source: MAG NEWS
No comments: