KNOWN IN REAL LIFE AS:
BEING SUPER FAST
HYPOPLASTIC RIGHT HEART
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Cam Betz, Age 5, from Canton, Ohio
Why Cam is an #ACHero: Born with hypoplastic right heart syndrome, a congenital heart defect, Cam had his first heart surgery at just 8 days old and open heart surgery at 7 months. Cam worked hard to achieve milestones, but his heart continued to struggle to give his body the oxygen it needed. After a third heart surgery at age 4, Cam’s oxygen levels increased from 75 to 98 percent, giving him the energy he needed to attend school and keep pace with the sports and activities he loves.
Sidekicks: Big brother, Brenin, and his dog, Gxer
When he’s not busy overcoming obstacles: Cam loves helping his dad fix old cars and watching him drag race. He also loves playing with his brother, running and riding his bike.
Did you know fact: At age 4, just 4 weeks after his third heart surgery, Cam learned how to ride a 2-wheel bike. A couple months later, he needed a new set of bike tires because he wore out the first set from doing so many burn outs on the pavement and grass.
Cam’s story: “Pshhhh.” That’s the sound of Cam’s imaginary turbo power, and when it kicks in, it’s hard to slow down the high-energy 5-year-old.
“He loves anything and everything to do with cars,” chuckles his mom, Kristin Betz. “He loves going fast – running or riding his bike. I think it’s because for the longest time he just couldn’t. His heart couldn’t keep up and give him the oxygen his body needed.”
Cam was diagnosed with a congenital heart defect, hypoplastic right heart syndrome (HRHS) or an underdevelopment of the right side of the heart, during a 20-week ultrasound.
Soon after, his mom came to the Akron Children’s Maternal Fetal Medicine team who confirmed the diagnosis and began following her pregnancy.
Cam was born 3 weeks early and, 8 days in to his neonatal intensive care unit (NICU) stay, on Christmas Eve, he had the first of 3 surgeries he’d need to improve his condition.
Because the right side of Cam’s heart – the chambers, valves and related blood vessels – were non-functioning, they weren’t sending enough blood to his lungs. His first surgery used shunts to temporarily provide blood flow to the lungs until he was ready for more significant repairs to his heart.
His family spent Christmas Eve in the Reinberger Family Center while they waited for Cam to get through his surgery. While successful, Cam’s NICU stay wasn’t quite over.
“The doctors told me Cam’s heart was doing well, but because he wasn’t interested in eating, he would need to go home with a feeding tube,” said Kristin. “I cried about it, but the nurses kept encouraging me and showing me new ways to hold him while feeding…By the time I convinced myself we could handle tube feeding, Cam decided to start eating on his own and graduated from the NICU on Jan. 3!”
Cam’s second surgery would be a waiting game.
“There is no specific age or time to get the second surgery,” said Kristin. “Timing depended on his weight, how fast he was growing and if he showed signs of struggle.”
During the next several months, Cam’s parents noticed he didn’t have a lot of energy and his skin, lips and fingers had a bluish tint.
Cam’s body was struggling to get the oxygen-rich blood it needed so, at 7 months old, he had open heart surgery.
“The surgeons and team were wonderful,” said Kristin. “After surgery, Cam started gaining weight, crawling and talking more.”
Every 6 months, Dr. Wasim Khan evaluated Cam, checking vitals and testing the amount of oxygen in his blood to determine when he’d need his third surgery.
“Cam really began to struggle his preschool year,” said Kristin. “His energy level was really low, he was exhausted after school and needed to be carried often…We knew it was time for his next surgery.”
Cam had his third heart surgery at age 4. It was a long, successful procedure. He spent 14 days in recovery, 12 of which were in the pediatric intensive care unit (PICU).
“The PICU nurses were amazing with him,” said Kristin. “To help him regain strength, the nurses would leave toys down the hallway, so he’d have to go on a scavenger hunt to find them. In return, he’d leave them pictures and, when the nurses found one, they had to come visit him. It was so sweet.”
Today, Cam goes to the Heart Center for regular check-ups to make sure he has the green light to live life full speed ahead.
“Honestly, the Cam they gave us back after this last surgery is like a different kid, in a good way,” said Kristin. “He never sits down, has tons of energy and is always on the go… I want him to live life and do whatever he’s able to do. If the doctors say he can do it then who am I to stop him?”