Dave Currie and Bailey Spiteri’s baby boy, Remy, is a giggling, happy baby with bright eyes and fiery hair. While he keeps the Victoria family busy in the same ways any 10-month old would, he also faced extra challenges.
Remy was born with Mosaic Down Syndrome, a diagnosis that also goes hand-in-hand with a high probability of heart problems.
At six weeks old he had his first echocardiogram (echo) and doctors discovered he had an atrioventricular septal defect (AVSD)– a hole in his heart.
“Doctors told us we were likely to see signs of failure around six months of age, and they were right,” said Spiteri. “We saw his weight decline, and he started breathing heavily. It became very apparent that he was suffering.”
ALSO READ: Father-son duo at B.C. Children’s Hospital helps new dads fight depression
Specialists waited until Remy was just over six months old before taking him into surgery at the BC Children’s Hospital in Vancouver where he had a five-hour open heart surgery. When he was cut open, doctors discovered the hole was larger than anticipated. They also discovered muscle build up on one side of the heart, a compensating development that was beginning to cause problems. Surgeons reconstructed the large hole, and created a smaller one in the oversized muscle to allow for drainage.
“It was awful, but at Children’s we were lucky that they were pretty familiar with the defect,” Spiteri said. “Everybody there was incredible, they were angels. They made one of the most petrifying experiences of my life more comfortable.”
Currie said that despite the fear they had as parents, hospital staff kept them up to date and well informed.
“The staff did a great job of explaining the potential situation,” he said. “Having that information it instills a lot of comfort in you.”
Since the surgery the family has been going to the Victoria General Hospital on a regular basis for follow-up echoes, knowing that even though Remy is gaining weight and doing well that there’s a slim chance he’ll need a follow-up surgery in the future.
The family is now advocating for people to help fundraise for the BC Children’s Hospital Foundation to help people like them stay healthy.
ALSO READ: Hugs bring healthy boost to Victoria newborns
May 2 is Jeans Day, one of the BC Children’s Hospital’s most popular fundraisers. Each year, 200,000 British Columbians buy a $5 button or $20 pin and don some denim to help support the foundation. Since the fundraiser’s inception in 1990 over $21 million has been raised.
“It comes down to the fact that you never know if you’re gonna be that person,” said Currie. “The services that were available to us… without those donations, those charities, it would have been that much more difficult. It does make a difference. It does help.”
Spiteri reiterated that her pregancy with Remy had been very uneventful, and nothing was seen on the prenatal screening.
“We had no idea that that was gonna be in the cards,” Spiteri said. “Without donors and people getting involved in BC Children’s it would have been completely different. We are eternally grateful … it saved our son’s life.”
Jeans Day pins and buttons can be purchased across B.C. at select shops. In Victoria, they can be purchased at Save-On-Foods, London Drugs, Thrifty Foods and Country Grocer.
For more information you can visit jeansday.ca.
Send a Tweet: @NicoleCrescenzi
Like us on Facebook Â
——
