Live Healthy Live Well

February is not only a time to celebrate love and Valentine’s Day with hearts, it is a time to raise awareness of Congenital Heart Defects and Diseases. Two years ago, I would have let February pass by like any other month, with the exception of flowers and candy from my husband. However, everything changed in the summer of 2018 when I was pregnant with our son. The day we heard our doctor say what no parent ever should have to hear, “We can’t see a clear picture of his heart”. After weeks of tests and ultrasounds, he was diagnosed with a congenital heart defect (CHD) – structural deformities that are present at birth and can be “fixed” or “repaired” after birth.  There are also congenital heart diseases which also have abnormalities within the heart but have lifelong impacts; and are often more severe in nature

Once we started researching with our doctor, we learned how common CHDs were in infants. It is the most common birth defect occurring in almost 1% of births. More than 40,000 infants are born each year in the United States with a CHD.

There are many types of CHDs that range in severity. The CDC website lists information for some of the more common ones. Our son has Tetralogy of Fallot, which is one of the most common, and easiest to repair. However, it is often difficult for me to explain his diagnosis. That is why I find this website helpful.

Many of the congenital heart defects require surgery; over 25% of children will need it. Some of the defects even require it before the age of 1 year old, and/or involve multiple surgeries. Our son is the 1 in 110 that was born with a CHD, and required surgery at 3.5 months old. He continues to have complications post-surgery, even after a successful repair. CHD is something he will live with the rest of his life, as will we, and the thousands of others that have been diagnosed with them will live with them for the rest of their lives.

Unfortunately, there is no cure for CHD, but there are ways to bring awareness to these defects and their lifelong impact. If you would like to learn more or help support those with congenital heart defects, please visit the Pediatric Congenital Heart Association website.This is a great organization that provides support to local families, advocacy at the state and national level, and education to communities. There are also various organized CHD awareness walks, fundraisers, and other events throughout the year.

Another way to show care is by volunteering or giving to the closest Ronald McDonald House, many children and families with CHDs spend several months over their lifetime in the hospital. If you have friends or family that are, pregnant or planning to try to conceive encourage them to get all of their prenatal care.

Sources:

Centers for Disease Control and Prevention. (2019, November 12). Specific Congenital Heart Defects. Retrieved from Centers for Disease Control and Prevention: https://www.cdc.gov/ncbddd/heartdefects/specificdefects.html

Mended Hearts. (2020). Retrieved from Mended Hearts: https://mendedhearts.org/

Pediatric Congenital Heart Association. (2020). We are Conquering CHD. Retrieved from Pediatric Congenital Heart Association: https://www.conqueringchd.org/

Written by: Bridget Britton MSW, LSW Family and Consumer Sciences Educator, OSU Extension, Carroll County

Reviewed by: Emilee Drerup  MPH, CHES Family and Consumer Sciences Educator, OSU Extension, Hancock County