Surgery offers hope for family of palsied boy
West Kelowna couple travel to Missouri to get life-changing operation for their 3-year-old son with cerebral palsy
AWest Kelowna family is seeking medical treatment in the United States for their son who has been diagnosed with cerebral palsy.
On Dec. 14, 2015, Stephanie Weller’s twin boys Alexander and Benjamin were born 11 weeks early, after doctors told her and her husband one of the babies wasn’t growing as quickly as his brother.
The Wellers were flown to BC Women’s Hospital in Vancouver, where the twins were born.
Alex weighed two pounds, and Ben weighed 2.5 pounds.
“They were too little to bottle feed or breastfeed yet, so they spent two months in the neonatal intensive care unit on oxygen and feeding tubes while we worried at the Ronald McDonald House,” said Weller.
After 75 days, the Wellers were able to bring their boys home.
They then began to notice Ben’s muscles were developing differently, Weller said.
“We noticed Ben was always easier to startle, and he was always fully extended, legs straight and sometimes crossed feet, like scissors.”
At their six-month checkup, Ben was diagnosed with cerebral palsy.
“We were devastated,” said Weller. “He didn’t even get a chance to feel what running would be like, or to chase his brother around.”
Ben’s specific diagnosis is spastic diplegia cerebral palsy, which affects his legs and arms, making them stiff and contracted.
It also permanently affects his muscle control and co-ordination.
“He will feel extreme pain in his legs and muscles as he gets older, and even now has horrible pain with growth spurts,” said Weller.
While cerebral palsy has no cure, a doctor in St. Louis, Missouri, offers a surgery for children with the disease.
“He invented a life-changing surgery that uses electricity to pinpoint the nerves that are damaged to the brain by opening a patient’s spinal cord, finding and (cutting) the nerves that connect the damaged part of the brain to the spastic muscles, eliminating them completely,” said Weller.
The surgical procedure, selective dorsal rhizotomy, is done at St. Louis Children’s Hospital.
On its website, the hospital lists the advantages of this procedure as being: reduced risk of spinal deformities in later years; decreased post-rhizotomy motor weakness; reduced hip flexor spasticity; shorter-term, less intense back pain; earlier resumption of vigorous physical therapy.
The Wellers are waiting for approval to travel to St. Louis to get this operation.
“Ben has shown to be an excellent candidate for this exclusive surgery, and is already surpassing milestones that we were told he (would) not be able to do,” said Weller. “We just want to give the best to such a wonderful little boy so he can walk like a normal three-year-old, kick a soccer ball or hit a baseball and run around the bases.”