Passionate About Iowa City
and the Moms Who Live Here.

Congenital Heart Disease: A Family’s Story

Special thanks to our friends at Mercy Iowa City for sharing their stories, advice, and medical knowledge with us.  Today’s story comes from Lisa, who is a PA at their office and whose daughter has congenital heart disease.

February is American Heart Month. It’s the month we hear a lot about cardiovascular disease. In fact, it’s the leading cause of death in the United States with one in every three deaths resulting from heart disease or stroke in adults.

What we don’t hear as much about in February is Congenital Heart Disease. Congenital heart disease, or a congenital heart defect, is a heart abnormality present at birth. There are many different types of congenital heart defects, ranging from simple conditions that don’t cause symptoms to complex problems that cause severe, life-threatening symptoms.

One in one hundred children are affected by Congenital Heart Disease and the Center for Disease Control and Prevention estimates there are currently one million adults and one million children living with Congenital Heart Disease (CHD). In the past, many children with CHD did not live into adulthood; however, with advances in treatment, many children grow up and live productive and active lives as adults with Congenital Heart Disease.  While some risk factors are known to cause CHD, often no cause can be found.  Research continues both on causes and advancements in treatment for children with CHD.

Congenital Heart Disease is a family disease and affects every member of the family. Here are a few perspectives:

The perspective of a child living with CHD: “Most people don’t know you have it. You look the same. You are just as normal as other kids. You are special just the way you are and you shouldn’t be discouraged.  Your mind has no limits and you can still do some sports.”

A sister’s perspective:  “I feel honored and happy to be a part of this journey she goes through every day. Even if there are rough patches, try to make the best of situations and have as much fun as possible.”

A brother’s perspective: “Treat them like you treat everyone else unless they need help.”

A father’s perspective: “I want children with congenital heart disease to know that they are loved. They have done nothing to deserve this and life isn’t fair but they can make it through this.”

A mother’s perspective: “Having a child with CHD is a gift. It’s a gift to learn to live in the present moment. It’s an opportunity to learn from some of the most courageous and incredible children who face their fears every day. It’s not easy and some days are more challenging than others; however, I feel truly blessed to be a heart mom.”

, , , ,

One Response to Congenital Heart Disease: A Family’s Story

  1. Laura Kimball March 4, 2017 at 11:30 am #

    Thank you for sharing. My son had open heart surgery six months ago after waiting almost eleven years from learning of his CHD to needing intervention. It’s such a humbling situation and it changes your perspective. I love your view of feeling blessed and living in the moment.

Leave a Reply