Baby with rare genetic condition had to get treatment in Toronto. Months later, he's coming home

SickKids has a bravery beads program where patients collect beads for every procedure during the course of their treatment and Mary Rankin says her grandson Rowan Brazil has hundreds.
SickKids has a bravery beads program where patients collect beads for every procedure during the course of their treatment. Mary Rankin says her grandson, Rowan Brazil, has hundreds. (Submitted by Mary Rankin)

A Newfoundland and Labrador baby born with a rare genetic condition spent months in a Toronto hospital for invasive treatment, but he is finally on his way home with his parents.

Before he was born, Rowan Brazil was diagnosed with a congenital diaphragmatic hernia, said his grandmother Mary Rankin.

It is a congenital defect that happens during fetal development when an opening in the diaphragm allows organs like the bowel, stomach and liver to move upward into the chest cavity.

An estimated one in 3,300 children in Canada are born with this condition and it can be fatal.

Rowan was born Jan. 30 and has been in the hospital for treatment since.

"He's doing really well. He's growing. He's still really tiny. He's four months old and he's just over 12 pounds," Rankin told CBC News from her home in Coley's Point.

"He's going to be a tiny boy but there's a big world for him to grow into."

After more than 200 days in Toronto, Rowan, along with Rankin's daughter Stephanie Mercer and her fiancé Tiffany Brazil landed in St. John's on Tuesday evening.

It's a reunion Rankin said she's eagerly waiting for.

"We're over the moon. We've been waiting and waiting and waiting for this day for four months and it's finally here. Can hardly believe it," said Rankin.

She said she's excited to see her grandson for the second time. She made the trip to Toronto in February while Rowan was in the neonatal intensive care unit and she had only been able to touch his head. Now, she said she will be able to hug him.

Medical journey

Rankin said doctors first noticed something was wrong with Rowan's development during a routine 20 week ultrasound appointment. It led to more testing that revealed the baby's diaphragm wasn't properly developing.

Within weeks, she said the couple was referred to Toronto's Hospital for Sick Children, commonly known as SickKids. The couple made the trip for a consultation where doctors agreed to take on Rowan's case. Rankin said they returned to N.L. to pack up their belongings and relocated in November.

She said Stephanie and Tiffany had to take time off from work for Rowan's medical care and were able to find someone to look after their three dogs for the past six months.

"Financially, it's been a major struggle because there's been no funding for any of this," said Rankin.

She said none of the treatment expenses incurred were covered by the provincial Medical Care Plan or insurance.

In a statement, the Department of Health told CBC News the province has "reciprocal billing agreements in place with other provinces and territories for the provision of health services."

For services that fall outside the reciprocal billing agreement, referring physicians can "request prior approval from the Department of Health and Community Services before the services are provided. In instances where out-of-province medical services are charged directly to the patient, the patient can apply for reimbursement of these charges," the statement reads.

"To be eligible for reimbursement, the services must represent insured services and be otherwise eligible for reimbursement."

The SickKids team said they would give Rowan his best shot, said Rankin, and his first surgery happened at 27 weeks, before he was born.

"And this surgery is new. It's only been around for a few years. And that's basically what saved his life," she said.

Rankin and her husband moved into the couple's home to temporarily look after their dog and she also raised funds to cover some expenses and sent gift packages to Toronto to support them.

Despite going through so many medical procedures in his very young life, Rankin said her grandson is a happy little boy.

SickKids has a bravery beads program where patients collect beads for every procedure during the course of their treatment. Rankin said Rowan now has hundreds.

When Rowan arrives in St. John's, she said he'll still have a feeding tube because his condition causes severe reflux. She said it could be months or a year before he won't need it anymore.

His next appointment at the Janeway children's hospital is scheduled for next week and his new care team will be in consultation with SickKids too, Rankin said.

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