Research for the future of our Heart Warriors

Hypoplastic Left Heart Syndrome (HLHS) is a rare Congenital Heart Defect (CHD) that affects roughly 1% of children born with a CHD. In a child with a fully-formed heart, the right side of the heart receives blood from the body and pumps it to the lungs for oxygenation. Then the left side of the heart receives the blood from the lungs and pumps it out to the body. In a child with HLHS, the left side of the heart is too small to pump blood out to the body, and, within a few days after birth, the child's body becomes oxygen-starved and medical intervention is required to keep the child alive. Before the 1970s, no child with HLHS survived longer than a week.

In the 1970s and 1980s, surgeries were developed that re-worked the heart so that the right side of the heart could perform the function of both the left and right side of the heart. Since then the developments have produced a course of three surgeries that successfully re-tool the heart and have brought the survival rate of children born with HLHS to ~95%. This has been amazing for the children, of course, but now we need to consider their futures.

Now children with HLHS are living into adulthood. This brings questions with it: how long can a re-tooled heart do the work of a normal heart? What happens when the degraded circulatory system begins to fail? If a child or adult goes into heart failure what are the paths forward and can we make them better? What can we do to forestall the symptoms of a failing Fontan and eventually eliminate them all together? Can we develop a better long-term solution?

The Foundation is here to help people and organizations who are trying to answer these questions. We raise the funds, so they can focus on the research.