ONE STEP AT A TIME Scottish coach Steph Robertson, who specialises in training children with cerebral palsy, working with Iarlaith Farrell from Charlestown at Gielty’s Bar in Dooagh, Achill. Pic: Michael McLaughlin
Iarlaith Farrell is next up with coach Steph Robertson after Molly McNamara finishes her session. Iarlaith had his surgery in 2015, and while he is not walking independently, he has learned to crawl correctly and has much more independence of movement than he had beforehand. There have been other benefits too, his father Ciarán explains.
“A big thing since the surgery is that he can sleep at night. Previously, with the spasticity in his muscles, they would contract at night and he would not be able to sleep for more than an hour or two. Since the surgery that’s gone completely,” Ciarán told us.
The financial outlay has been considerable. For physio alone, the Farrells fork out €300 a week, between three sessions at home with Alan Dunne from Tourlestrane, who Ciarán says has been ‘excellent’, and a trip to Limerick every Saturday for specialist treatment.
“It’s a good mortgage,” observes Ciarán. For many children, if they are to get SDR surgery, their parents must have the means, both in terms of operation costs and aftercare.
Ciarán shakes his head when recalling a conversation with a neurosurgeon in Ireland who said he had offered to introduce SDR to Ireland, but he was turned down by the HSE. He says ‘Iarlaith would quite simply be in a ball in the corner without SDR’. As we watch, Iarlaith is making his way around the hall in Gielty’s with the help of a walker.
“SDR does not cure you, but it gives you the tools to improve. There is a huge improvement since the surgery. When Iarlaith’s legs were spastic – I hate that bloody word – he would be stretched out and unable to uncross his legs. He can do that now.”
Before his surgery, eight-year-old Jack Holmes from Crossmolina was using a cane walker, only able to walk on his tip toes and criss crossing his legs with every step. He was heading towards life in a wheelchair.
The SDR surgery has removed the spasticity and high tone muscles from Jack’s legs and he has had much greater independence since.
“Jack is much happier in himself. When it is a nice evening Jack will be outside for a couple of hours playing with his friends and his cousins, and there’s not a bother on him. Without the surgery he’d be sitting inside in a wheelchair,” Karen Holmes said.
Quality of life
Karen argues that the HSE ought to provide this treatment in Ireland or, if not, much greater access to it abroad. It should also provide support with aftercare, she believes.
“The HSE do need to provide SDR treatment. Jack was the 12th Irish child to go to Dr Park. There have been a lot more since. Over 40 Irish kids have gone now. Most of their families have to go fundraising in their local communities, and that’s not fair; it is something that should be provided via Irish healthcare.
“We knew when we went for the surgery that we would have to take care of a lot of the aftercare ourselves, but that does not make it right. From a financial point of view, the costs which would be incurred by the State if these children did not have the surgery would be significant,” she said.
Not every child will walk independently, but they will be a lot better than they were after the surgery, explained Robertson, who did some of her training under Dr Park in St Louis. “Everyone who has done it is very happy with the results,” she said. “Dr Park is very good at managing expectations. All the kids who have the surgery improve. Especially if the work is put in, you see massive results. It might be walking with a walker – that could be a massive improvement from their starting point. One child I know could not lift her head, now she’s walking with a walker. That’s huge.
“Another part of it that’s vital is that they are in a lot less pain, and their quality of life improves dramatically. I’d recommend the operation just for the pain relief alone.”
According to the St Louis Children’s Hospital in Missouri, SDR surgery has ‘undergone more thorough scientific scrutiny than any other (including orthopaedic surgery)’ for patients with cerebral palsy.
It states that Dr Tae Sung Park has performed over 2,000 SDR surgeries ‘without a single case of postoperative neurological complication’, adding that he is ‘considered the global expert in managing cerebral palsy spasticity’.
The hospital goes on to state, on its website, that Dr Park has been named in ‘Best Doctors in America’ since 1994 and has been honoured with, amongst other accolades, the Richard Winn MD Prize for Meritorious Research from the Society of Neurological Surgeons, which is considered ‘the most prestigious international research award for neurosurgeons’.
The Mayo News submitted a series of questions to the HSE yesterday (Monday) morning relating to the issues raised in this feature. The HSE’s Communications Department said it was not in a position to answer all questions in time to meet the print deadline. Its response will be published in next week’s paper.
More on this story Walking in the right direction