The family of a one-year-old baby in New Brunswick says Medicare will now cover their son’s out-of-country surgery that they say will likely save his life.
Monica Larocque and her husband have been fighting to have their son Mateo’s surgery in Ohio covered for months, but Medicare initially denied their claim. Mateo was diagnosed with a rare condition three days after his birth that’s left him unable to pass stool on his own.
READ MORE: Ontario parents living in N.B. seek out-of-country treatment for child with rare disease
Larocque said she has to irrigate his bowels several times per day. She also said he had surgery when he was three months old, but that it was unsuccessful and prompted the family to start researching expert surgeons. The family eventually found one in Ohio who has performed more surgeries on babies with the disease than any surgeon in Canada.
Medicare initially denied the claim but reopened the family’s file in mid-August. The family recently moved to Oromocto, N.B., from Kingston, Ont., and said their surgeon had agreed to write a letter to Medicare, describing the need for Mateo to see the Ohio surgeon.
“Our surgeon in Kingston agreed to write a letter describing our needs for the surgery in Ohio in a little bit more detail and Medicare has reversed their decision to allow us to go,” Larocque said. “We’re really thankful that we’re able to go to have him treated.”
She said she was at home with Mateo and her daughter Matilda when she got an email from the physician from Medicare saying their claim was approved.
“I couldn’t stop crying,” Larocque said. “My daughter kept asking me if I’d fallen down — she had no idea what had happened.”
She said after several days of being in shock and crying, she said it still feels surreal that Medicare reversed its decision.
Larocque and Mateo will head to Ohio on Sept. 12 for appointments and tests, followed by the surgery the following week.
“We never thought that this was going to happen,” Larocque said.
She said her understanding is that Medicare will cover the pre-quoted medical procedures. Larocque said anything beyond that is her family’s responsibility. She added that the community has come together to support them and have held various fundraisers to help offset the travel and accommodation costs.
“All of the support from the community, bottle drives, online auctions… there was a lady selling bath bombs in Fredericton. Like people from little corners of the Earth that I had no idea existed have come together and really helped alleviate the stress on our family and we just, we can’t express how much we’re grateful,” Larocque said.
Mateo turned one, just days after the family found out the news. She said it was the best early birthday gift they could have asked for.
“His birthday was really special this year with just having the hope that he’ll be treated by the right people and will have some answers and hopefully have a pooping baby later this year,” Larocque said.
Larocque said she can’t believe she will no longer have to spend time boiling and mixing up saline solution to irrigate Mateo.
“I was just getting everything ready to make saline again for him and just the thought of not having to go through this all the time and for him not to have to do it so often is going to mean the world, and I really hope that he has a functioning bowel in the next little while and that he can be healthy again,” Larocque said.
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