Nora Nunn-Murphy doesn’t know how her Halifax-area family will come up with more than $85,000 for a rare hip surgery in the United States, but she knows she has to try.
If not, her daughter may have little hope of walking as she gets older.
Nunn-Murphy’s seven-year-old daughter, Brenna Benoit, has cerebral palsy and a condition called hip dysplasia, which is forcing her hip to fully dislocate from the socket.
Brenna used to be able to stand up and walk with the help of braces and a walker, but now gets around in her pink and blue wheelchair. Nunn-Murphy sees Brenna’s hip mobility deteriorating and worries if she doesn’t get the right treatment soon, her hip will be inoperable.
She and her husband, Al Benoit, said they believe they have no option but to forgo the Nova Scotia health-care system and head to a surgeon in New Jersey who performs a hip surgery known as the café door procedure.
The surgery releases tight muscles and connective tissue so the hip joint can sit better in the socket and move more freely. Nunn-Murphy said it’s less invasive than other hip surgeries and is performed by only a handful of surgeons in the world.
“That’s a hard pill to swallow when you’re living in a province that you feel like nobody can help you,” Nunn-Murphy said in an interview at the family’s home in Middle Sackville, N.S.
“And by the time they do help you, it feels like it’s a little bit too late.”
Brenna loves music, wheelchair basketball and swimming. She has a contagious laugh and a big smile.
But she’s been dealing with compounding health issues for her whole life, and Nunn-Murphy left work to provide full-time care and advocate for her.
In 2022, CBC News covered the family’s attempt to get financial support from the province, and their goal of getting Brenna to the U.S. for a different procedure to help her feet and ankles.
‘You end up just spiralling’
Brenna is a patient at the IWK Health Centre, a children’s hospital in Halifax, where she’s eligible for a surgery called an osteotomy to treat her hip dysplasia.
But Nunn-Murphy said after many conversations with the surgeon who would perform the surgery, she concluded this option isn’t right for her daughter.
She said the procedure is mainly for chronic pain management, not to increase her hip functionality. And she said no rehabilitation would be available to Brenna afterward, which means Nunn-Murphy and Benoit would be responsible for that at home.
“The surgery that’s offered here could take away her ability to ever stand and use her walker again, which just means quality of life goes down for Brenna,” Nunn-Murphy said.
As she looked for other options within the local health-care system, Nunn-Murphy felt she was running out of time.
She said in the past, Brenna had waited nine months to get her wheelchair fitted, 11 months to receive the wheelchair, and more than a year to get braces for her feet.
“As a parent now for seven and a half years in this system, I know we don’t have time to take those steps where things are constantly getting lost, people don’t call you back,” Nunn-Murphy said.
“You basically get a run around, and you end up just spiralling because you don’t know what to do next.”
She decided to reach out to Dr. Roy Nuzzo, the surgeon who performed Brenna’s last surgery in the U.S., and he introduced her to the café door procedure. As she researched it, she felt it could be Brenna’s best chance.
The family booked the surgery for November. Nunn-Murphy said the last time Brenna went to the U.S. for a surgery, she tried to get it covered by Nova Scotia’s Medical Services Insurance, but her daughter’s doctors wouldn’t write letters in support of the procedure.
This time, she felt she didn’t have time to try.
Health minister interview cancelled
CBC News scheduled an interview Thursday morning with Nova Scotia Health Minister Michelle Thompson to respond to Nunn-Murphy’s concerns about the health-care system, and the fact the family will pay more than $85,000 to receive care in the U.S.
When CBC showed up for the interview, a department spokesperson said it was cancelled because department staff wanted to speak with the family first.
In an emailed statement, Thompson said she understands this a difficult situation for everyone involved.
“I recognize there are situations where procedures and treatments are not available in the province,” the statement said. “Even in these situations, we make every effort to support the delivery of care where it is available, if the patient is eligible.”
Nunn-Murphy said Thursday afternoon, a Health Department employee called her to walk her through the process of asking Brenna’s doctor for a referral letter and applying for coverage for the procedure, saying the family is now “front and centre” with the department.
IWK says its surgery can increase quality of life for patients
In an email, an IWK Health Centre spokesperson said she is unable to comment on Brenna’s case due to patient privacy, but responded to general questions about the health care offered at the hospital.
Andrea Slaney said the osteotomy procedure available at the IWK “can include pain relief, improved hip function, reduced risk of hip dislocation, improved seating, improved daily personal care, and reduced risk of arthritis in the future, which has a substantial impact on quality of life.”
Slaney also said IWK rehabilitation services works with the orthopedic care team “to provide the best evidence-based care to patients.”
She did not respond to questions about whether the IWK is aware of the café door procedure and if it is recommended for patients.
Nunn-Murphy said she had given literature on the procedure to Brenna’s surgeon in Halifax, who said he would look into it on his own time, which she appreciated. But she didn’t hear back from him for around two months, and only after CBC News contacted the hospital.
Brenna’s family is now focusing on fundraising $100,000 to cover both the surgery and its related costs, including rehabilitation, braces and travel. The payment for the surgery is due on Nov. 1. They’ve launched an online fundraiser and plan to hold community events like a raffle and a benefit dance.
“This has been my career,” Nunn-Murphy said. “I want to be her mom, but I also have to be everything else.… There’s just so many shortfalls.”
