August 8, 2017 7:40 pm
Updated: August 30, 2017 4:05 pm

Ontario parents living in N.B. seek out-of-country treatment for child with rare disease

The Ontario parents of a baby boy born with a rare disease say they may have to look outside the country to save their child’s life. Global’s Adrienne South has their story.

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The parents of an 11-month-old baby boy in Oromocto, NB say they’re doing whatever they can to get their son in for surgery to treat his rare disease that’s left him unable to make a bowel movement on his own.

Monica Larocque said her son Mateo was diagnosed with Hirschsprung’s Disease three days after he was born.   She said he’s unable to pass stool because of a problem with his bowels.

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“We waited until he was three months old and had a surgery done to try and correct that and unfortunately the surgery was not successful and we still have a baby that is having trouble passing stool,” Larocque said.

She and her husband Master Cpl. Sam Orprecio moved to New Brunswick in June from Ontario after he was posted to CFB Gagetown.

“Two to three times per day we have to insert a catheter into his bottom and manually help him evacuate his bowels.  He can’t pass any stool on his own,” Larocque said.

She said the irrigations were working okay until the last couple months, but said because his diet is advancing it’s becoming more challenging to keep him healthy.

“If you’re not able to keep him cleaned out properly of stool he can develop an infection that can be life threatening in these babies [with the disease], and so it’s a big stresser for our family to make sure we’re doing an adequate job keeping him cleaned-out,” Laroque said.

“My plate’s pretty full at work because we just got posted here in June,” Orprecio said. “Monica has been through a whole lot getting him irrigated two to three times a day if need be, just to keep him healthy.”

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She said there are options in Canada for surgery but said a surgeon in Ohio sees a higher volume of children with the disease, and wants to take him to a specialist there who has performed more surgeries to fix this condition than other surgeons in Canada.

“There’s options in Canada, so lots of pediatric surgeons in Canada, the problem is that we just don’t have one specific centre that sees a high volume of these babies,” Larocque said.

Larocque said she’s heard good things about the IWK Health Centre in Halifax, as well as Sick Kids in Toronto, and has Mateo booked for an initial appointment with a surgeon in Toronto. But she said that appointment isn’t until November, and said that has to take place first before a surgery can be scheduled.

“The biggest thing is the timeline,” Larocque said.

“We’re worried that we can’t keep him healthy enough until November for his initial exam [in Toronto] and some procedures they need to sedate him and check what’s going on and then the surgery would be again after that, whereas Ohio was able to fit him in.

She said he’s scheduled in Ohio in September for all of the exams, the initial anesthesia and an operative date the following week.

She said November is a long time to wait and is worried Mateo could suffer from an infection if he has to wait.  Larocque said the surgeon’s office in Ohio she’s been speaking with can get Mateo in for an initial visit, and surgery all in the same week in September, but she said it will cost $108,000 plus travel, and said Medicare won’t cover his surgery because there are surgeons who could do the surgery in Canada.

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Larocque said there are very skilled and knowledgeable surgeons in Canada, but said there is no centre in Canada that sees as many cases of the disease as the centre in Ohio.

“We’ve applied to Medicare, [and] we’ve got the initial denial.  They’ve said that we need letters from Hirschsprung’s Disease specialists across the country, but that also they cannot … there’s legislation that prevents approvals for any surgeries or procedures that are available in Canada so they can’t make an exception based on the need for expertise or length of wait time,” Larocque said.  “Which I feel is a big gap in our legislative system because my baby would be best treated in that centre.”

In an emailed statement from New Brunswick’s Department of Health, spokesperson Paul Bradley said the Medical Services Payment Act states that in order for New Brunswick Medicare to consider covering the costs of a medical procedure outside of the country, the service must be unavailable anywhere in the public sector in Canada.

Bradley said the request must be approved by the Medicare medical consultant of the New Brunswick Department of Health.

“Waiting times in Canada are not taken into account when deciding on out-of-country (OOC) coverage,” Bradley said.  “Specialists in Canada will bump people up in line if they determine that they cannot wait a certain amount of time. Canadian specialists are the ones who decide whether a ‘more specialized’ surgeon needs to be consulted OOC or not, and they should contact Medicare for prior approval for an OOC referral.”

He said it’s a clinical decision that’s not determined by Medicare or the patients themselves.

“Life or death situations don’t normally go through the prior approval process, as they are urgent. That again can only be determined by local specialists. Approximately 20 patients per year from New Brunswick are approved for Medicare coverage for out-of-country services,” Bradley said.

Larocque said she’s grateful for all the support she and her family have received through their new community and said a Facebook group created to bring together local moms in the community lead to her sharing her story. This prompted other mothers to encourage her to start a bottle drive and GoFundMe page to try and raise money to take Mateo to the specialist in Ohio.

“We’re doing our own fundraising efforts we’re doing bottle drives, the community has really pulled together we’ve had people coming and dropping off recycling at our house so we’re doing the best that we can to come up with as much money as we can in the process. So we’re working on that side of things as well as trying to navigate the medicare system and try and get our baby the best care possible,” Larocque said.

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