At 17 months old, Max is crawling, standing and babbling. While it might seem he’s a little behind on these milestones, he’s actually right on track. That’s because Max was born with a congenital heart defect.

He’s had major surgery to fix his aorta and he’ll need a valve replacement. He eats through a feeding tube in his stomach. But you wouldn’t necessarily know how sick he is.

“We work so hard,” says Max’s mother Marla Finnestad, who helps her son with everything from physical therapy to speech therapy. “Every little thing becomes this beautiful little milestone.”

Congenital heart defects

“We work so hard. Every little thing becomes this beautiful little milestone.”

One out of 100 babies is born with a congenital heart defect.

While she was 20 weeks pregnant, Finnestad found out that Max had hypoplastic left heart syndrome (HLHS), a defect that affects blood flow in the heart; ventricular septal defect (VSD) and atrioventricular septal defect (AVSD), a condition characterized by holes between the chambers of the heart; and mitral valve stenosis, where the valve between the two chambers on the heart’s left side doesn’t open properly.

Max was born full term and was quickly transferred to Seattle Children’s Hospital where he had major surgery, which his mother says, “wound up overwhelming his left side and he almost died.”

Max’s chest cavity had to stay open for nearly three weeks due to swelling. Still the surgery worked, which allowed Max’s left ventricle to grow to almost normal size.

Staying positive

Despite this difficult journey, Max’s mother is positive about his future.

“I’m never going to tell him that he can’t,” says Finnestad. “I’m never going to tell him that he’s different.”

She knows her son will have some limitations. For example, he takes medicine every day and doctors say he can’t play sports.

“Max’s broken heart made mine whole,” Finnestad says.

Reaching out

Dealing with the diagnosis of a congenital heart defect has been challenging but Finnestad is grateful for the support from other parents who have experienced it.

“It feels so good to know he has such an extended community of people rooting for him,” she says.

Now she’s sharing Max’s story to help others.

“Connecting with other parents has allowed me to ask so many questions I never would have thought of,” she says, advising fellow parents, “Listen to your instincts. Find time for yourself and hold on, it’s going to be a bumpy ride.”