hayden's heart

Most people have never heard of Congenital Heart Defect (CHD), but the scary truth is that CHD is the #1 cause of birth defect related deaths, and the leading cause of ALL infant deaths in the United States.

Before Hayden was prenatally diagnosed with Hypoplastic Left Heart Syndrome (HLHS), a severe form of CHD, no one in our extended family or network of friends knew much about CHD or HLHS. Unfortunately, these acronyms soon became and still remain a daily topic in our house and among the people in our lives. Because of Hayden, over 20,000 are now aware of Congenital Heart Defects and Hypoplastic Left Heart Syndrome.

Below are some disturbing facts about CHD and HLHS as well as helpful links for more information.

Congenital Heart Defect (CHD)

Please visit these links for more information:

Hypoplastic Left Heart Syndrome (HLHS)

Hypoplastic left heart syndrome (HLHS) is a severe congenital heart defect in which the left side of the heart is underdeveloped. The heart's left side has the job of pumping oxygenated blood into the aorta, the large artery that carries blood to the body.

Hypoplastic left heart syndrome (HLHS) is fatal without early intervention. It will typically require open-heart surgery to re-direct the oxygen-rich ("red") blood and oxygen-poor ("blue") blood in a series of three reconstructive operations known as "Staged Reconstruction."

The three stages are respectfully named:

This 3 stage surgical process is not a 100% fix - often times children and young adults need a pacemaker or even a heart transplant.

The oldest known living survivor with HLHS is in their early 30's.

Please visit these links for more information:

Other CHD related resources and websites

Social Security disability help for families with a child with a CHD

Sisters By Heart
A volunteer organization that strives to help moms with newly-diagnosed babies.

Sam Vlasics Foundation
The mission of the Sam Vlasics Foundation is to help children with congenital heart defects and their families.

Beats for Bella
Creating awareness for Congenital Heart Defects and contributing to funding life-saving research.

Mended Little Hearts Philadelphia Region -
Works nationally and in communities to provide hope and support to children, families and caregivers impacted by congenital heart defects in order to extend and improve quality of life.

CHD Babies
CHD Babies was created for new and veteran heart families to find a variety of information about CHD all in one place.

Jameson’s Army
Raising awareness and funding for children and families affected by congenital heart defects in the Pittsburgh, PA and South Western PA.

To save the lives and support the families of children and adults who are genetically predisposed to sudden death due to heart rhythm abnormalities.

Whole Hearts Foundation Providing education, support, connections, and innovation for the families of a child living with pediatric congenital heart disease—without boundaries of faith, culture, or economic standing.

3.12.12 - 8.16.12