Baby with rare genetic condition is happy despite all he's endured, say his moms

A baby born with a rare genetic condition that required extensive surgery before he was born is back in Newfoundland and Labrador, and his parents say they're in awe of what he's endured before even reaching his six-month milestone.

While in utero, Rowan Brazil was diagnosed with a congenital diaphragmatic hernia, 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.

His parents, Tiffany Brazil and Stephanie Mercer, relocated to Toronto so he could undergo corrective surgeries and he was born on Jan. 30. Afer months of further treatment, they family returned home to South River, N.L., in June.

"He is the happiest little guy. He has the best smile and he's really cheeky. Like, I think he's going to be a little bit of a troublemaker," Brazil said, laughing.

The only time he cries is when he's in pain, like if his feeding tube is bothering him, his diaper needs to be changed or his teeth are bothering him, she said.

Both Mercer and Brazil say they're in awe of their son.

When he was born, Mercer said the doctors were counting his life in hours and seeing how he would fare.

"Now to look at the little baby that we've got here who's playing with his toys and going on stroller walks and is going swimming…. It blows my mind, almost every single day, to look at him and [think about] all of the odds he was given," said Mercer.

She said they were told about Rowan's diagnosis during a routine 20-week ultrasound and up to that point, everything had been going well.

"All our early ultrasounds had been good. We had no reason to suspect that anything was amiss or was off," said Mercer.

The radiologist told them what the defect was, suggesting their baby was not likely to survive, she said.

Brazil said they went home and spent the weekend in bed, crying and looking up everything they could about the diagnosis. They decided to get a second opinion.

From there, she said they relocated to Toronto before Rowan was born so he could undergo surgeries at the Ontario Fetal Centre, based at Mount Sinai Hospital.

"They said if I went ahead and did the fetal procedure, that they could likely get them up to a 45 per cent chance [of] survival, up from a zero to 15 per cent," said Brazil.