The Micah Mason Research Fund
What if you only had half a heart? Children born with HLHS will face this question their whole lives. Now that surgical techniques have made living into adulthood a possibility, the question of what treatment will look like for adults needs to be answered. 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 and what happens when it no longer can?
This research fund was established through the Children's Heart Foundation to give those people who are working to answer those questions the funding they need.We will work very closely with The Children’s Heart Foundation, its Medical Advisory Council, and researchers as we discuss, review and select research for funding. We are excited about active involvement in this process! Our ability to select projects will begin when we have raised enough money via this fund. Your support is invited, and is very critical, and will be greatly appreciated as we look to fund difference-making research for Micah. We will provide regular updates on this process so that you can understand how your support is helping to make a very big impact and difference.