Baby with rare condition is happy despite all he's endured, say his moms
While in utero, Rowan Brazil was diagnosed with a congenital diaphragmatic hernia that required surgeries and a 127-day hospital stay. (Submitted by Stephanie Mercer)
A baby born with a rare 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.
She was 27 weeks pregnant when the first procedure was done.
127 days in hospital
Mercer said even with the surgeries before he was born, they knew he would have to be intubated after he was born and put on a ventilator to breathe.
"It was just kind of 'cross our fingers and hope for the best,'" said Mercer, adding Rowan spent 127 days in Toronto's Hospital for Sick Children, said Mercer.
"Out of the 127 days, the first 17 days he spent on a ventilator. So those days were even longer," said Brazil, who said the family was able to come home on June 11.
Brazil said during the trip home Rowan contracted COVID-19, which is harder on him because his lungs already have to work hard to breathe.
Mercer said they still have a long road ahead of them, explaining the surgeries moved Rowan's organs close to where they should be and then repaired his diaphragm with a patch.
"He'll be monitored as he grows. Because his defect was so large and the patch is so large, there is a risk that as he grows, the patch could let go."
That could mean Rowan will need more surgeries, either to adjust the patch or replace it.
Mercer added that right now he can't swallow food and his food and medication has to be given to him through his tube.
"Those are definitely an ongoing battle," she said.
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