Members of a Caledon family say they’re on the hook for more than $100,000 in U.S. hospital bills, after a SickKids surgeon wouldn’t sign off on OHIP coverage for a teenage girl’s potentially life-saving surgery.

For nearly two years, Ciara O’Rafferty, 13, has been coping with a rare digestive disorder. Back in late 2013, she began vomiting for no clear reason, parents Joe and Susan O’Rafferty told the Star.

The months ticked by until they finally got a diagnosis at SickKids in March 2014: Ciara was suffering from superior mesenteric artery syndrome, or SMAS, a painful and potentially life-threatening condition that occurs when arteries compress a portion of the small intestine.

It was the beginning of a nightmare.

In the months following, Joe and Susan watched their young daughter spend a portion of her school year at SickKids while being fed intravenously using total parenteral nutrition, or TPN.

In May 2014, Ciara was sent to a hospital in London, Ont., for a surgical consult, but the surgeon chose not to operate because she felt Ciara’s condition wasn’t severe enough to warrant surgery, Susan said.

Back at SickKids, Ciara was gaining weight and eventually discharged in August after spending six months in the pediatric in-patient unit. But by November, Ciara’s weight was down to around 90 pounds, and she was re-admitted to SickKids in January 2015.

“At one point, she couldn’t walk because she was on such high rates of hydromorphine,” Susan added. “We had to detox her from that, at 13 years old.”

She was also back to TPN, but the constant intravenous feeding was hurting her liver, according to Susan.

The family pushed for surgery, but Susan said Ciara’s surgeon at SickKids wouldn’t agree to an operation, deeming it too invasive — and also wouldn’t sign off on OHIP coverage when the family found a well-regarded pediatric surgeon in Pennsylvania willing to do it.

A spokesperson for SickKids said the hospital does not “have authorization to release any information” and did not provide further comment.

Now, the O’Raffertys said they’re facing more than $100,000 in hospital bills and hotel costs.

“Our only alternative was going to the States for surgery,” Susan said.

“There were a few times I thought she was going to die, when we were here in Toronto, when there was no way of feeding her. At one point, she was being fed through her veins and she was going into liver failure.”

At PinnacleHealth hospital in Harrisburg, Pa., earlier this summer, Ciara went through three surgeries with pediatric surgeon Dr. Domingo Alvear, while her family stayed in a nearby hotel for nearly six weeks.

The hotel bill alone was about $10,000 U.S., according to Ciara’s father.

The good news is, Ciara is now home in Caledon and improving for the first time in months, he added.

“She’s eating and keeping food down, but she’s not really gaining any weight of significance. We’re getting bloodwork to see if there are any other issues,” Joe said.

Meanwhile, Susan and Joe — who have five other children — are trying to comprehend how a Canadian surgeon could block OHIP coverage for what they see as a necessary surgery.

A spokesperson for Ontario’s Ministry of Health and Long-Term Care explained that all applications for prior approval of out-of-country medical services must include written confirmation from an Ontario specialist in the same field as the services sought.

Applications also need to meet certain criteria, such as the service being medically necessary, and either not performed in Ontario or performed here but needed sooner to avoid a deadly or medically significant delay.

“Prior written approval from the ministry must be received before any (out-of-country) health services are performed,” Joanne Woodward Fraser told the Star in an email. “If prior approval is not received beforehand, services are not eligible for funding.”

Patients can also search for other Ontario specialists through the College of Physicians and Surgeons of Ontario, Fraser noted.

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“We were told it had to be surgeon-to-surgeon, so if the surgeon at SickKids wouldn’t sign off, no one would,” Susan said. “We had already tried London. And we thought it would be more affordable (in the U.S.) because Ciara had a GoFundMe page set up.”

That online fundraiser for the O’Rafferty family has raised around $45,000 so far, not even half what the family expects to be the final cost.

Following Ciara’s stateside surgeries — which were far pricier than Joe and Susan expected — the family reached out to Dufferin-Caledon MPP Sylvia Jones in hopes of gaining government help.

“It’s a terrible, terrible situation that they’re racking up the bills and can’t do anything about it, but there is an appeal process,” Jones told the Star, adding her office has been in touch with the family regarding an appeal.

Susan said they are waiting to hear what, if any, financial assistance they will receive from Medicaid in the U.S. They may appeal their lack of OHIP coverage after that, she said, and also plan on filing a formal complaint against the SickKids surgeon.

As for Ciara, she’s just happy to be eating again, and getting to spend time with her friends and family outside the walls of a hospital.

But she also said SickKids classified her as just “someone with an illness,” without recognizing her individual treatment needs.

“I just want people to be more aware of everything that’s happened, because everyone deserves to be treated properly in a health-care system,” Ciara said.

What is SMAS?

Superior mesenteric artery syndrome, or SMAS, is a rare disorder of the digestive system.

The condition happens when two arteries — the superior mesenteric artery, which provides blood to the small intestine, colon and cecum, and the abdominal aorta, the largest artery in the abdominal cavity — compress the duodenum, which is the first part of the small intestine.

The compression causes partial or complete blockage of that area of the small intestine, leading to symptoms like a feeling of fullness, bloating after meals, abdominal cramps, nausea and vomiting.

SMAS can be tricky to diagnose. Treatments include a liquid diet or smaller feedings, and symptoms typically get better after any lost weight is restored, or after a body cast is used, according to the International Foundation for Functional Gastrointestinal Disorders.

Surgery is only necessary in rare cases, the foundation notes.