You are not alone, we are all in this together
What is HLHS?
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?; is there going to be degradation of the heart or a higher chance of outright failure?; can a body with a single-pass heart receive a donor heart in the event of failure, and how much work will be required in order to get the body to use a donor heart?
The Foundation is here to help people and organizations who are trying to answer these questions.
Resources for Parents
Our Journey with Micah
More of Micah's Story