A Saanich couple who risked bankruptcy to pay for life-saving surgery for their 10-year-old daughter in the United States says they have renewed hope that the B.C. health care system will compensate them for parts of the $400,000 cost.
Dan and Laura Murray are in the midst of a third appeal to MSP to cover the cost of surgery for a rare disease they believe was not available in B.C., or Canada.
“This is a story of a girl who fell through the MSP cracks, and it nearly took a family right out,” said Dan Murray, whose daughter Madeleine suffers from a rare version of arthogryposis, commonly known as clubfoot, that attacks her core. She wears a neck brace for support and uses either a wheelchair or walker to get around.
The youngster is back at Saint Joseph’s elementary school after an 18-month saga during which she suffered a failed surgery in B.C. and then nearly died of post-surgery complications. But life is not the same. Madeleine is not the same, and Murray’s once prosperous business has been whittled down to a staff of three from 10.
“Having a rare disease is a huge impact,” said genetic counsellor Jocelyn Carter-Sim at Vancouver Island Medical Genetics, who organizes Victoria’s parent-to-parent resource group where parents and guardians of children with rare diseases meet up.
Navigating the system is toughest part, she added.
“It’s hard on these families trying to navigate health care, trying to get support, missing out on support and benefits, tax benefits, and saying the right thing to get the right resources, it’s a real drain,” Carter-Sim said. “This is not what your expectations were, this is not what you signed up for, it’s a true loss of normalcy.”
Before she was six years old, Madeleine underwent several surgeries including two failed hip operations, surgeries for a hernia, a broken leg and hamstring extensions. In the fall of 2015 she had growing rods inserted into her back to help correct a worsening curvature of the spine. By January 2016, her parents recognized something was wrong. The rods, which can be extended as the child grows, were pushing against her skin.
“You could see them under her skin, it was awful, you knew it wasn’t right,” Murray said.
It was brought to the attention of Madeleine’s local specialist and the surgeon who performed the operation but instead of removing the rods immediately they were left in until June, Murray said. When they were finally removed, her spine curved at her neck to a 150 degree angle and her head came to a rest on her chest. It was in that situation that Dan and Laura said they couldn’t go back to the same B.C. specialist team and surgeon that put her in that position.
“I couldn’t go back to the same surgeon [and doctors] at that point, that was enough,” Murray said.
Murray gathered up the dozens of files on his daughter’s health and presented it to a specialist in Montreal, but that specialist wasn’t confident in the situation either.
Murray realized he might want to try the U.S. system and soon came across the Paley Institute in Palm Beach, Fla., home to specialist Dr. David Feldman, a man that Dan Murray describes as an absolute godsend to his family.
“It’s not until you get to the Paley Institute that you meet other families with young children who’ve gone through this,” Murray said.
The family met children with similar afflictions from all over the world. Feldman told them it was the same story with most, that by the time he sees them, they’ve had multiple surgeries, many with failed surgeries, the Feldman sometimes has to fix.
Feldman proposed two surgeries for Madeleine with about one month of halo traction in between. The cost, with rehabilitation, accommodation, flights and living expenses, ended up being about $500,000.
“It cost me $7,000 just to collect everything from Madeleine’s health history and fly down to meet Feldman in the first place,” Murray said.
With Feldman, they had renewed hope that Madeleine could regain a quality of life, particularly her mobility, that she had already lost. But when Dan and Laura took their case, including Feldman’s successful record with children in the same situation as Madeleine, to the B.C. doctors who had overseen Madeleine, they refused to sign off, Murray said.
Instead, the Murrays remortgaged their home and cashed in life insurance policies to pay for the surgery, while campaigning for aid on Gofundme.com.
“It was an hourglass and I saw the sand falling, that was the amount of time we had if we were going to save Maddie,” Murray said.
The first surgery was a success. The traction process went well enough, with Madeleine back on her feet while wearing a giant halo that stabilized her head on her chest. The second surgery was on track until the end, when Madeleine’s lung collapsed. She went directly into the intensive care unit at West Palm Hospital and “nearly died a few times.”
Madeleine went into ICU for 39 days, at a cost of more than $2.5 million worth of post-operative care, and it was all waved, Murray said.
“By Day 25 someone at the hospital said ‘Well, we’re at the $2 million mark now,’” Murray said.
In addition to Feldman and a GP on the floor, Madeleine had six specialists overseeing her kidney, blood, lung and chest, nutrition, heart and any infectious diseases.
“I told the CEO during the ICU stage, I don’t have the money for this, and she told me, don’t worry about it,” Murray said. “She was their miracle child. When it was time for us to go, we were able to say thank you and goodbye to the entire board of the hospital, it was incredible.”
Throughout the ordeal Dan flew back and forth to Palm Beach, where Laura stayed by her daughter’s side.
Dan tried to maintain his business but the intensity of Maddie’s situation kept him away. In a matter of months his heating and furnace systems company fell from 10 employees to three.
“I had to make some tough layoffs,” Murray said. “The stress is like nothing else, but when I take my last breath on this world I won’t think about anything except that we did everything we could to save Maddie’s life.”
During the process there was no time to grieve, added Murray, who believes he’s in the midst of grieving now.
“What I had to do to get support is mind boggling,” Dan said. “Madeleine is not the child she was before her rod surgery.”
Now that they’re back the family has faith in the physiotherapists at a local clinic, who are working with Madeleine’s rehabilitation. But even that is costing money.
“There’s not enough attention on rare diseases in children, not enough awareness. We need to lose the blinders and put all the rare disease situations together.”
Murray attended the Rare Disease Day event held at Gorge Vale Golf Course on Feb. 28 (Rare Disease Day is actually on Feb. 29, the rarest of days, but is celebrated on on Feb. 28 on non-leap years)
For now Madeleine is able to attend school every morning and is looking at a big window without surgery before she’ll need it again.
When she arrived back to teacher Larissa Keleher’s Grade 3 class earlier this year, Madeleine was greeted by a wall-length “Welcome back Maddie” poster created by the kids.
“The kids were excited for her to come back, they miss her when she’s gone,” Keleher said. “Because of her they have a better understanding of their own life.”