Two local families with young children who have congenital heart defects were at City Hall for the official proclamation declaring today Congenital Heart Defect Awareness Day.

Congenital Heart Disease is something parents and pregnant women need to be more aware of, with one third of CHD cases being diagnosed in utero.  Every 15 minutes, another child is born with a form of CHD, affecting 40,000 infants in the USA alone.

There is no cure for CHD, and 25% of kids who are diagnosed need heart surgery.

One of those kids is four year old Owen Fodchuk. Owen was at City Hall for the proclamation with his parents Grace and Cory. Owen was diagnosed with Congenital Heart Disease when Grace was 18 weeks pregnant.

Grace was sent to Sick Kids and Owen had his first surgery before he was born.

“He had his first heart surgery at 25 weeks gestation,” Grace said, “and he was the youngest baby to have this surgery performed on. And the second baby in all of Sick Kids to make it this far. So he’s our little miracle.”

Owen has since had two open heart surgeries and three stomach surgeries in four years. He has another surgery on March 18th to help with blood flow.

“Hopefully he’ll have more energy and fight sickness a lot better,” said Grace, “so we’re hoping for the best.”

Grace says parents need to be vigilant when it comes to CHD, and watch out for signs before and after the baby is born.

“It’s so important for us to get the awareness out,” she said. “Twice as many children are dying from congenital heart defects than all cancers of childhood combined. Which is alarming.”

Grace says hospitals should be doing tests when a baby is born, like an oxygen saturation test or checking for labored breathing or if a baby has a blueish color. She also said pregnant women should get regular ultrasounds.

“It can be life saving,” she said, “If we didn’t have our routine ultrasounds with Owen, he wouldn’t have made it. They wouldn’t have found his heart defect.”

One in 100 kids are diagnosed with CHD and it’s important for expecting mothers to know the facts. Usually mothers can find out between 18-20 weeks of pregnancy if the baby has CHD.

The Fodchuks are getting ready for Owen’s next surgery in March. Grace says they take things with their son one day at a time.

“We don’t know the life expectancy of him,” she said, “They told us he wasn’t supposed to be born in the beginning. And we had a lot of close calls. So we just take one day at a time. The end goal–we don’t really have one. It’s just, get through each day. […] We’re grateful for each and every day that we have.”

The Fodchuks have a Gofundme page where the family is accepting donations.

The Jacobs family has a similar story. Crystal Jacobs was with her daughter Mercy, who is three years old.

Mercy, like Owen, has had multiple surgeries from a young age. Crystal says Mercy’s survival rate was 1% and when she seven days old she had to have a shunt put in her brain to drain the fluid to her stomach. At eight weeks old, Mercy had a complicated procedure and she wasn’t doing well in recovery.

“It wasn’t a good time for us,” Crystal said. “She pulled, she was tough. And the odds were against her but she did it.”

Mercy has made 39 trips to Sick Kids in 19 months. This was the family’s first Christmas at home and Crystal said it was bittersweet.

“We got to spend time with family,” she said, “but at the same time, it was like, when are we going to have to go back? What’s next?”

The Jacobs family makes a trip to Sick Kids every second month and there is more testing for Mercy coming up. She says there is another issue with her heart that needs to be assessed.

“We’re just going to take it one day at a time and go from there,” she said.

Crystal says the biggest thing people can do to help fight CHD is donate blood.

“You never know,” she said, “my daughter went through lots of blood. And every bag is a different donation. And you don’t know how much you need it until you go through something like that.”

You can learn more about Congenital Heart Disease here.

Filed under: Local News