Twelve months on from controversial spinal cord surgery five-year-old Isabella Lombardo from Sydney hopes 2018 will be the year she walks without assistance.
“I want to walk with no sticks and no-one holding me,” said Isabella.
Isabella has a form of cerebral palsy called spastic diplegia and needs a wheelchair, walking frame, or her parents’ help to move.
Last Christmas, her parents took her to the United States for an operation called Selective Dorsal Rhizotomy (SDR) at St Louis Children’s Hospital in Missouri.
A surgeon cut parts of the toddler’s abnormal nerves that connected the muscles to the spinal cord, and by cutting those signals the muscles could relax.
Isabella’s father Joseph Lombardo said he could see a difference in his daughter straight after the operation.
“Her legs were completely relaxed for the first time, her toes weren’t pointed in, her knees weren’t held together, her feet weren’t flexed,” Mr Lombardo said.
It took three months for Isabella to recover from the operation, then she began a regime of physiotherapy appointments five days a week and regular hydrotherapy sessions.
“Essentially what you have to do is reprogram the movement patterns,” Mr Lombardo said.
“She learned how to move her legs when they were still affected by spasticity and now she has to learn how to move new muscles and turn them off and on in a different pattern.”
Isabella’s mother Libby Lombardo said after three months her daughter could use her walker again and soon she was even able to run in it.
Now, she is also learning how to take steps with the help of two bright pink walking sticks.
“The most wonderful thing is to see her self-confidence lift, like in herself she is so much happier, she is like a different child,” Ms Lombardo said.
“She is able to participate in things and her inclusion with preschool and with her friends is just phenomenal to watch.”
A ‘controversial technique’
Cerebral Palsy Australia’s website describes SDR as “a reasonably new and still somewhat controversial technique” where the “long-term benefits and known side effects are not yet available”.
Dr Simon Paget from The Children’s Hospital at Westmead said SRD surgery is offered at some of the large children’s hospitals in Australia, including Westmead.
“The surgery can be an effective treatment for some, but not all, children with cerebral palsy and is typically suggested after comprehensive assessment,” Dr Paget said.
“I would advise parents who are considering travelling overseas for the procedure to discuss their plans with their treating team prior to making a decision.”
Parents say they understood risks
Isabella did not qualify for the surgery in Australia because her doctors said she was too young, her condition was not serious enough, and the irreversible procedure might have made her worse.
The Lombardos said they understood the risks but put their faith in their American surgeon, Dr T.S. Park, who had performed SRD surgery more than 3,000 times.
“It’s interesting that the doctors who said they didn’t think that it was the right thing to do, wouldn’t recommend it, and couldn’t recommend her for surgery here in Australia have basically said, ‘Well, she’s had a fantastic result’,” Mr Lombardo said.
The Lombardos admit the past year has been tough on their young daughter and they would much rather have been taking her to play dates than doctor’s appointments.
“It does break your heart that you’re not just going to the swimming pool and the park like any other five-year-old should be, but for me my biggest drive is Isabella,” Mrs Lombardo said.
“She sits at the park and she watches her little baby brother running around and she says, ‘Mummy, I wish I could walk’, and it really hurts.
“That’s when I don’t stop trying and I’m not going to stop trying to do everything that I can for my daughter to have the best success that she can.”