Genean Blair and Brianna McLellan met a few years ago when they were working at neighbouring businesses. Now they have much more in common.
Genean’s daughter Addison, now 17 months, was born with a congenital diaphragmatic hernia, or CDH.
Brianna’s son, Ollie, to be born in July, has been diagnosed in utero with the condition. They would like to raise awareness of CDH.
Like Ollie, most babies with the condition are diagnosed before they are born.
The hernia means that Ollie’s diaphragm hasn’t fully formed, so his abdominal organs have pushed up into his chest cavity.
His little heart has been pushed to one side and there’s little space left for his lungs to grow.
Between now and when he’s born, Brianna will have to make several trips to BC Women’s Hospital in Vancouver for amniotic testing, where she will stay once she is in her 35th week of pregnancy.
After Ollie’s birth, he will be whisked away from her for a series of corrective surgeries.
Genean points out her experience with Addison was not the norm for CDH.
The condition was not diagnosed until Addison was born. There were some terrifying times when she couldn’t breathe well, but she was discharged from hospital at 17 days, without oxygen or medication, and has had no problems since.
Genean emphasizes how serious the condition is.
“Most people will look at this birth defect and think, ‘It’s nothing, what are you worried about – it’s not a big deal.’ But it is a big deal. We are beyond lucky, beyond blessed with this outcome.”
Genean wants other moms to have faith and hope, but she also doesn’t want to give false hope. In hospital she heard many times that CDH babies are the sickest babies in the neonatal intensive care unit.
She also heard they’re all different.
“They say CDH babies are like snowflakes. No two are alike; they have different problems, different outcomes, they get sick at different rates.
“They are difficult to treat - they don’t know how they’re going to react.”
She hopes raising awareness of the condition will lead to more research and knowledge. And she points out that it’s more common than people realize.
“People have called it rare, but it happens as often as cystic fibrosis and spina bifida. Everybody knows about cystic fibrosis, everyone knows about spina bifida, but no one knows about CDH.”
Genean, Addison and Brianna will have a table at the Mall at Piccadilly this weekend to help raise awareness of the condition that has affected all their lives so much.