Saturday 21 September 2019

'I never even dreamt Dylan would take his first steps' – Irish families on life-changing US surgery

Dylan (10) was diagnosed with cerebral palsy at 12 months old. Photo: True Shot Photography
Dylan (10) was diagnosed with cerebral palsy at 12 months old. Photo: True Shot Photography
Catherine Devine

Catherine Devine

A dad has told how he watched in “astonishment” as his young son took his first steps after undergoing a life-changing surgery in the US.

Gerry Walsh, from Co Wicklow, brought his son Dylan to Saint Louis Children Hospital (SLCH) in Missouri to undergo a surgery that would help Dylan to walk.

Dylan, now 10-years-old, was diagnosed with cerebral palsy at 12-months-old and was told he would be in a wheelchair up to his 10th birthday.

“Tomorrow Dylan is playing in a hurling blitz, the surgery changed his life," Dad Gerry Walsh told Independent.ie.

The family went to Missouri for selective dorsal rhizotomy (SDR) surgery, where the nerves in the spinal cord are cut to ease spasticity and release tension in the nerves and body.

Currently, the cost of the surgery is $45,000 (€43,000), which includes the surgery as well as three weeks of intensive physiotherapy post SDR and a refundable $6,000 (€5,700) provision for equipment and splints, which the patient may or may not need.

After the surgery Dylan can now take part in hockey games
After the surgery Dylan can now take part in hockey games

“In 2011 when Dylan was a five-year-old, the medical professionals in Ireland wouldn’t discuss the SDR surgery.

"They didn’t know anything about it. When we came across the SDR surgery, the history wasn’t great.

"But we knew a Wicklow family who had gone to America for the surgery and we saw his improvement and it was astonishing,” Gerry said.

The family decided to travel to the US for surgery and began fundraising over €60,000.

In 2012, Dylan became the ninth child in Ireland to have the SDR surgery in the US.

“Before the surgeries Dylan couldn’t stand, he got around by crawling.

“When he took his first steps it was astonishing. I never even dreamt that could happen. I never thought it would become a reality. He never knew what it felt like to stand,” said Gerry.

“The spinal operation is invasive. It was a big decision to make but we never looked back.

“The spasticity was causing him so much pain because his legs were so tight. He’d wake up in the morning crying and we’d have to force his legs into a position because they were so tight.

“Dylan now has an extreme pain threshold because he got to a point where pain was normal to him.”

Gerry said that even if Dylan didn’t walk after the surgery, it was still the right decision if it meant he would no longer be in pain.

“He became a happier, louder child because his little body wasn’t tense from being in pain.

“The pain was like when you point your toes as far as you can and hold it. Most people can only do that for a couple of seconds but that’s pain he was constantly in.”

Before the surgeries Dylan was given Botox injections to help release the spasticity but it was only a “temporary release”.

After 2012 an assessment team in Ireland was set up to look into making the surgery available here.

The surgery, which is since available in the UK, is covered under the treatment abroad scheme but there is a tight criteria to be selected which Gerry is campaigning to change.

The SDR surgery was pioneered by Dr Park in St Louis and he has performed the surgery almost 4,000 times since the 1980s.

“People all around the world go to learn from him.”

Gerry said the success of the surgery widely depends on your “definition of success”.

“Some kids who have the surgery are now doing karate, others are just in less pain. Everyone is different. Some parents wonder why their child isn’t running but every child is different and the outcome of the surgery is different for everyone.

“I haven’t heard any regrets or disappointments with the surgery and I’d know most of the families in Ireland who have had the surgery.”

Gerry warned that the surgery isn’t a “fix-all” solution and that there is a lot of physiotherapy and exercising to be done afterwards.

“The surgery doesn’t get rid of cerebral palsy but it helps them along the way. Dylan says the surgery meant the world to him.”

“Dylan has had other surgeries since and he’ll have more again in the future but he wouldn’t be where he was today without it.”

Thankful

Isabelle with her husband and three children
Isabelle with her husband and three children

Isabelle Dodeman-Lawless (50) from Dublin was the only adult from Ireland and the oldest person in the world to undergo the SDR surgery in St Louis.

“After a difficult birth, I didn't breath for a minute, which resulted in a mild form of cerebral palsy (CP). I walked at two years old and have always been very active and independent.

“I stated to notice I was getting stiffer in my twenties, but it was subtle in the beginning. By the time I was in my 30s and especially after having my three children, my mobility was deteriorating very quickly. I was increasingly tired and in pain, I was falling very often. I needed support to go up or down kerb, stairs and downward slope. I was losing my independence.

“The brain damage causing CP is not progressive. However, the spasticity or constant pulling of the muscles takes its toll on the body, which means that over time, even people with mild CP see their mobility deteriorate in adulthood."

Isabelle explored other treatments such as baclofen, botox injections and physiotherapy before hearing about the SDR surgery.

"The cut off age for SDR had been extended to 50 years old, and I was 49 and 11 months old at the time of my surgery in February 2016.”

Isabelle said that thankfully her parents gave her “an advance on her inheritance” in order to pay for the surgery before she missed the cut off age.

Isabelle and her husband
Isabelle and her husband

“We are also extremely thankful to the army of friends and family who looked after our three teen age children while my husband and I went over to America for four and a half weeks to have the surgery and intense physiotherapy.”

Isabelle said the few days post-surgery were “rough”, which was made worse by her reaction to the pain medication.

“Post SDR, my legs felt were like cooked spaghetti and I had to learn how to walk again, build strength and endurance, discover and build new muscles I never knew existed or were supposed to be used for walking.”

She explained that her posture has improved and she can now walk faster and for much longer distances.

“SDR combined with a huge amount of daily physiotherapy, personal training, stretching and exercise at home has allowed me to regain some of the mobility I had lost and to regain my independence.

"I have resumed being able to do things that people take for granted like carrying the grocery, which I could no longer do before SDR.

“Now when I walk, I feel I am gliding rather than dragging myself. It is such a privilege and a glorious feeling.”

Anyone who wants more information on the SDR surgery can visit https://www.facebook.com/groups/160985950682949/

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