By Rachel Williams
Four years of research was enough to convince Tara Thompson that the benefits of a risky surgery to alleviate some of her daughter Willow’s cerebral palsy symptoms,
far outweighed the possible negative effects.
The NSW mother went against the advice of many Australian specialists and flew her daughter Willow to the US for the procedure.
The five-year-old is one of a few thousand people with CP across the globe who have sought out a regarded neurosurgeon at St Louis Hospital to undertake Selective dorsal rhizotomy (SDR).
The surgery involves opening the back of one or more vertebrae in the lower spine to expose the spinal cord with the neurosurgeon selectively cutting the sensory nerve fibres which send messages from the leg muscles back to the spinal cord to reduce spasticity in the legs.
Tara said making the decision to proceed with the operation had been a long and complex process – one that started when Willow was just 18 months old, having been diagnosed with CP at seven months.
Willow, who has two sisters – Ava, 7 and Indy, 2 – was born prematurely at 29 weeks due to a placental abruption.
Tara and husband Kirk knew from that moment that she had suffered brain damage and would possibly have CP and other disabilities.
“Willow progressed a lot slower than her older sister and was showing that she was behind in milestones even from an early age,” Tara recalls.
“Her right hand was constantly fisted. Willow was quite upset and frustrated often as a baby. She found it difficult to play, sit and crawl and it was actually quite a stressful and daunting time.”
Tara became heavily invested in at-home play therapy to complement Willow’s regular professional appointments.
The former early childhood educator and primary school teacher develops creative methods to include therapy into day to day life.
The idea of SDR was first floated through social media, when someone with a successful SDR story made contact with Tara.
“Someone approached me on Instagram about SDR. Their child had it and was quite adamant that Willow needed it and that all of the therapy in the world wouldn’t give her the same gains,” Tara says.
“We were at the beginning stages of working through her diagnosis and the thought of putting her through such an invasive operation that she technically didn’t need wasn’t something I was interested in whatsoever. We did a lot of therapy at home and although progress was slow there was still progress.
“SDR was always on my radar though.”
During an SDR operation, the neurosurgeon divides each of the dorsal roots into 3-5 rootlets and stimulates each rootlet electrically. By examining electromyographic (EMG) responses from muscles in the lower extremities, the surgical team identifies the rootlets that cause spasticity. The abnormal rootlets are selectively cut, leaving the normal rootlets intact.
According to the St Louis Children’s Hospital, at present, SDR is the only surgical procedure that can provide permanent reduction of spasticity in CP.
Willow’s paediatrician and specialist team were quick to dismiss as an option the surgery, which has not been completed many times in Australia.
“But I couldn’t get it out of my head. I began researching it constantly, began following others on social media that had the operation and the idea kept becoming more appealing.
“The children that were having it were all so much like Willow with similar abilities and the same diagnosis.
“For the next year or so I would bring it up at appointments to have the idea easily fade again.”
Eventually Willow’s doctors agreed she could be a suitable candidate but suggested she wait until she was eight years old to make a definitive decision.
Tara thought that would be too late and so began the journey to St Louis.
“Dr T.S Parks is a neurosurgeon there and has completed the operation over 4000 times with extremely positive results,” Tara explains.
“We were more confident traveling to a doctor that had a wealth of experience and knowledge around it – we were confident that if we were going to do it we needed to go to someone who was well trusted, plus we weren’t about to wait another few years for a probable no from the Australian specialists.
“Like all operations there were possible complications – paralysis of the legs and bladder, incompetence, and sensory loss were the most serious complications. But we researched for years and these possible complications were very rare.”
Dr Parks confirmed Willow would be an excellent candidate – saying that he would expect to see her spasticity permanently reduced, her sitting and standing postures improve, transitions would be easier and faster and her balance and level of comfort would improve.
He also said he expected the surgery would allow Willow to walk independently in all environments – a dream come true for Tara and Kirk.
The family fundraised for 18 months to raise $120,000 to pay for the surgery, flights to the US and five weeks of accommodation while Willow recovered and underwent intense physical therapy.
Tara says the operation went smoothly.
“We were required to come back to the hospital each day for a one-hour physio session to assist Willow in regaining her pre-surgery strength,” she explains.
“During this time Willow also underwent a second operation called Percs. This is a muscle lengthening operation and while it required only a one-hour hospital stay, it was a lot more painful for Willow. They say Percs is like the ‘icing on the cake’ for SDR and in Willow’s case, Dr Parks wouldn’t operate unless we said we would also have Percs during our stay.
“It was extremely daunting and overwhelming seeing how weak Willow was post-surgery and it was hard not to worry about if we did the wrong thing,” Tara admits.
“But every single day she became stronger and we could already see an increase in flexibility and range of motion in those early weeks.”
Tara says that requirements after SDR are very strict.
“Willow needed to wear knee splints at night for two months and must wear night foot/ankle orthotics. We must complete home stretching at least twice a day, attend physio five times a week (along with all her other therapy sessions) and continue with a home program.
“Leading up to the surgery I was a bit overwhelmed with all of these requirements but Willow has tolerated it all really well.”
Willow is now 5 months post-surgery and Tara says she is amazed with the result. She credits her constant at home therapies for achieving such a successful outcome.
“I think her body feels different and it’s easier to move, plus she has gained so many new skills so this is very encouraging and motivating for her.
“The abilities she now has are what I was hoping to
expect at about a year post-surgery. She has made
so many gains, is so much stronger, her posture
is incredible. “She has endless new skills that she wasn’t able to do prior to SDR but above everything else she is so much happier.
“It has made a noticeable difference to her behaviour and mood. Willow also has autism and behaviour was something we all struggled with but the decrease in frustration has helped her in so many positive ways. She is also very much on her way to becoming an independent walker.”
An independent future awaits Willow, who, according to her mum, is an extremely witty and smart child who can talk about anything and everything – “which is ironic considering she started her early years with a speech delay and required a lot of speech therapy”.
“My hope is that Willow continues to make gains in her confidence and mobility so that she can live her life as independent and free as she chooses,” Tara says.
“We are working on her endurance, so while Willow can take independent steps now she does fatigue. So, keeping up with physio and giving her multiple opportunities throughout the day to continue to build strength will assist in increasing this.
“Willow is about to start a three-week intensive therapy program at the NAPA Centre. This requires 2 hours of intense therapy every day for 3 weeks.”
Tara is excited to see the improvements Willow will make after the NAPA program and she is confident in recommending other parents of CP children investigate if Willow’s journey could be suitable for them.
“I would 100% recommend other families looking into SDR surgery to see if their children are a possible candidate. It is the best decision we have made for Willow to date and I am so glad we went with our gut to look into it further and to travel to see Dr Parks.”
To follow Willow’s journey and to access some of Tara’s home therapy tips, visit the website www.willowscpjourney.com.au/