Local family lives with defect, uncertainty

SHERBURN – Two-year-old Leo Heller has reached a milestone, and his parents are celebrating.

But it isn’t one most of us would ask for.

Leo’s milestone isn’t that he is speaking in short sentences, or learning to sort shapes, common markers in a 2 year old’s development.

His milestone is that he only has to have his heart checked once per year now.

“That is a big deal in the heart world,” said his mom, Megan Heller.

Leo has a bicuspid aortic valve, a congenital heart defect.

Inside the heart are valves that regulate blood flow from the heart into the aorta, the major blood vessel that brings blood into the body.

Most people have three leaflets covering the valves to regulate the flow. Leo only has two. It is one of 40 congenital heart defects affecting children.

Nearly 1 in 100 babies are born with one, according to Lasting Imprint, a non-profit based in Mankato dedicated to creating a support system for families affected by congenital heart defects.

Congenital heart defects are the No. 1 birth defect, causing more infant deaths than all childhood cancers combined.

For the Hellers, their journey into the world of CHD began shortly after Leo was born during a routine heart check, one that revealed a heart murmur.

Five days later, the young family began a year of tests that held good and bad news. It confirmed that Leo had CHD, but also showed it wasn’t getting worse as he grew.

“The rate of development in the first year is so rapid they have to keep checking it,” Megan said.

The defect is currently not affecting his heart function, although there is always a chance his blood flow will become restricted and his heart valve could narrow.

Megan talks matter of factly about his chances of heart catheterization or valve replacement, but it wasn’t something she expected during her pregnancy.

She said she knew about adults with heart problems, but she had no idea how prevalent it was in children.

“In the past 10 days I have met four families with children with heart defects locally,” she said, this in addition to the several she already knows.

Megan is hoping to help others become aware of the problem and let them know there is a push to get more research into its cause.

Congenital Heart Defects Awareness Week, which began Thursday and runs through Valentine’s Day, is an opportune time.

The city of Fairmont has made an official proclamation for the week, as has Gov. Mark Dayton’s office.

Heller, along with several other local “heart families” are planning to take part in an “Our Community has Heart!” 5K, blood drive, and outreach event, on May 18 at Spring Lake Park in North Mankato to raise support and funds for CHD research.

For more information about CHD or Lasting Imprint, visit www.lastingimprint.org.