Help with surgery outside of NS not covered by health insurance

I am heartbroken to meet patients across Canada who have to remortgage their homes lamented Paula Cameron, whose eight-year-old daughter, Maddy, was diagnosed with umbilical cord syndrome in the United States.

The American Association of Neurological Surgeons describes this condition as a neurological disorder caused by tissue attachments that limit the movement of the spinal cord in the spine .

Symptoms rapidly worsened

A year and a half ago, Paula Cameron said she noticed her daughter was tripping a lot and having trouble holding things.

The symptoms have gotten worse over time, she says, to the point where she needs a wheelchair.

Her pediatrician ordered magnetic resonance imaging, which revealed structural defects in the cerebellum. While researching these deformities, Paula Cameron discovered that some children with these symptoms also have umbilical cord syndrome.

She took Maddy to see neurosurgeons in Nova Scotia, who assessed that nothing showed up in her daughter’s imaging to suggest she had umbilical cord syndrome.

Unconvinced, the mother arranged a consultation with Dr. Petra M. Klinge, a neurosurgeon in the state of Rhode Island with expertise in this type of disorder. He diagnosed the girl with umbilical cord syndrome.

The surgery Maddy needs isn’t available in Canada, her mother says.

Specific criteria

For Maddy’s care to be covered by Nova Scotia Medicare, she would need a referral from Nova Scotia specialists.

The Nova Scotia Department of Health and Wellness said out-of-province referrals are only considered if the requested area of ​​expertise is not available in the province.

With regard to umbilical cord syndrome, the department claims that there are resources and expertise to diagnose it in Nova Scotia.

The department added that there are specific criteria that must be met for Medicare to cover out-of-province treatment.

The diagnosis must be confirmed by a Nova Scotia specialist, the Nova Scotia specialist referral must also be undertaken by the specialist caring for the patient, and the medical procedure must be covered by health insurance. sickness.

The mother is moving forward with the procedure for Maddy in the United States. She raises funds on the GoFundMe crowdfunding platform. She has raised over $15,000 so far.

Maddy could have surgery in Providence, Rhode Island, as early as September, hoped Paula Cameron.

” I really hope that the operation will restore her energy so that she can play like a normal child. It’s really hard to see a child in bed on his side, curled up for most of the day. »

If the operation succeeds, Paula Cameron is convinced that it would make all the difference for her daughter.

Maddy talks about feeling like a child in an old woman’s body remarked his mother.

The example of Kyle MacLean

Kyle MacLean, a 28-year-old from Glace Bay, Nova Scotia, recently underwent spinal surgery for umbilical cord syndrome in Providence. He said his symptoms started four years ago.

Like Maddy, MacLean’s cord did not show up on imaging and he was eventually diagnosed by Dr. Klinge in the United States.

Kyle MacLean says he feels much better since the surgery and is finally able to lie on his back, even though the surgery ended up costing him around $65,000.

When I get my files back [médicaux] and everything else, I’ll go talk to medicare and see if I can get something back, but I don’t have much hope.

According to a CBC report