FITCHBURG (WKOW) — A Fitchburg family is working to live a healthy life while raising awareness for congenital heart disease (CHD).
Every day a child is born with CHD, and seven years ago, it was Clark Ostrom. At just two hours old, he was put on a ventilator.
“He was born at 36 weeks, and so we figured he might have some breathing problems,” his mother, Carissa Ostrom, said. “We had no idea he had this heart defect.”
After his diagnosis, Clark had a balloon put in his heart to widen a narrow heart valve, and Carissa connected with local cardiologist Luke Lamers.
“I remember the first time I met him, I was impressed by how good things looked,” Lambers said.
Dr. Lambers said he kept a close eye on Clark’s heart, and when Clark turned five, they noticed the balloon valve was becoming more dysfunctional. So, they decided to do a Ross procedure, essentially playing musical chairs with the valves in Clark’s heart.
“You take one valve, you move it into a different position in the heart,” Lambers said. “Then you replace the valve that you took out … moving them around.”
Dr. Lambers said while this isn’t a permanent fix, Clark is expected to live a long, healthy life. Lambers said his goal with all his pediatric patients is to have someone look at a playground and have no clue who his heart patient is.
“We let him play soccer, we let him wrestle with his brothers, we let him do all these things that a normal kid gets to do because that’s definitely how you want him to be treated,” Carissa said.
While they have a much better understanding of what it means to be a heart family, Carissa said the transition was hard.
“You just try and find all this information you can,” she said. “And we came across Conquering CHD, which helped kind of navigate a lot of the things that we were looking for.”
So much so, that Carissa now works for the organization. It started by speaking to new heart families and going to hospitals asking what they can do to support. Now, she’s talking with Congress about funding for heart care.
“It gave me great opportunities to learn and grow and to know how to advocate more not only for Clark, but for other kids who like him, who are now living into adulthood,” Carissa said.
While she said she’s sad to meet new heart families under these circumstances, she’s eager to welcome them to a supportive community that understands the mental and emotional tolls CHD can take on a family.
Click here if you’d like to learn more about Conquering CHD.