The parents of an Oromocto, N.B., toddler are grateful to have their son Mateo be able to pass stool on his own, after a successful surgery in the U.S. in September.
Monica Larocque and her husband Sam Orprecio said their son Mateo was diagnosed with Hirschsprung’s disease when he was three-days old, and has never been able to defecate on his own. Since he was born, the family has had to irrigate his bowels several times a day and ensure he doesn’t get an infection.
The family moved to New Brunswick in June 2017 from Ontario, and had been trying to get Mateo to see a specialized surgeon in Ohio, but Medicare initially denied the claim because there are some surgeons in Canada who can perform the surgery.
READ MORE: Ontario parents living in N.B. seek out-of-country treatment for child with rare disease
In late August, Medicare reversed its decision following the coverage from Global News.
“Mateo had his surgery in September, and he had all the testing done beforehand and they fixed him — he’s all better now,” said Larocque.
She said within 24 hours of having the surgery, Mateo started stooling.
“I went to change a diaper and there was poop. I couldn’t believe it. I started crying and I called the nurse in and I said, ‘Is this what I think it is?'” Larocque said.
Mateo’s father was also extremely relieved.
“I lost my breath when I saw the poop. No one usually says that, I mean, you lose your breath for a different reason because of the smell and all, but for us, it was a totally different experience,” Orprecio said.
Larocque said she “teared up” and said the surgery has made a huge difference in Mateo’s life, and in theirs.
WATCH: Baby undergoes rare surgery while still in the womb
“They saved my baby’s life and we couldn’t be any more grateful than what we are — he’s a different baby because of what they did for him,” Larocque said.
Despite the initial battle with Medicare, the family said the fight was worth it.
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“We’ve had so much support and it’s incredible the miracle that has happened for our baby,” Larocque said.
Mateo’s mom said they were lucky that Medicare ended up covering the surgery, but she said not all families are that lucky.
Larocque said she’s part of a Facebook group for parents of children with Hirschsprung’s disease and said there are other families across the country going through the same thing.
“We had to do quite a bit of advocating for Mateo to get the care that he needed,” Larocque said. ‘The Canadian medical system is fantastic and you know it works well when it does work, but for complicated families with Hirschsprung’s babies, there really are some gaps that we need to work through and help these families make it a little bit easier than what we had to go through to get the proper care for our baby.”
READ MORE: Medicare reverses decision; New Brunswick family heading to U.S. to treat son’s rare disease
Orprecio agrees more needs to be done to help other families, but said it’s difficult because while Canada does have medical facilities, he said the doctors in Ohio are more specialized in helping children with Hirschsprung’s disease.
Larocque said there is a surgeon in Toronto, but said if she had to wait for Toronto, he would have had the initial testing in October. She said they likely would still be waiting for the surgery if they hadn’t gone to the U.S.
She added the physician in Toronto is out of office until April.
“So he’s away half of the year so we would be waiting, who knows how long, to have our baby healthy again,” Larocque said.
Orprecio, who serves in the military, said they are extremely grateful that everything’s going well now.
“I’d like to thank everyone that’s helped us, the community, our friends, people we don’t know, my co-workers, my job, I mean they’ve helped us. I just want to say ‘Thank you,'” Orprecio said.
“It’s completely an incredible feeling to have a healthy baby and even six months ago, I never thought we’d be to this point where our baby is running around and we don’t have to worry about how his belly looks and what he’s eating and if we’re going to be able to help him pass stool. He’s a happy, healthy baby and I hope that it continues the way it is now,” Larocque said.
She said as she and Mateo were coming back on the airplane, something extraordinary happened.
“Funny story is that as we were getting back on the plane to come home, Mateo had an ‘explosion’ that every parent has at one point or another experienced, all the way up his back, and the smile on my face was incredible. It was an unfortunate circumstance, but we left Canada with a baby that couldn’t poop and then we came back with a baby that was pooping up his back on the plane, and it’s just such a big difference,” Larocque said.
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