What is HLHS?

HLHS

Hypoplastic Left Heart Syndrome is a Congenital Heart Defect (CHD) where a child is born with a non-functioning left side of their heart.

This site helps explain in more detail how a HLHS heart functions and the surgical techniques in use today.
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The Foundation

Named after Micah Mason, a heart warrior, the Foundation was created to support institutions performing research of treatment of HLHS and similar CHDs.

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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.

Foundation News

  • Check out our new video all about the Todd and Karen Wanek Family Program at the Mayo Clinic and HeartWorks. These groups do some amazing work in the field of research and development for our HLHS warriors. Whatever stage of the journey you are on, I highly recommend looking into the Todd and Karen Wanek Foundation, and the HLHS Consortium, and see if there are any ongoing studies you can be a part of.

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  • Team Micah Mason is gearing up for this year’s DFW Congenital Heart Walk! Only 4 days left until heart walk day! Come join us August 21st, 2021 in the Six Flags Parking Lot anytime from 8am to 10am! If you’d like to join our team or help us reach our goal of $1,000.00 please click on the link below. We’re over $800.00 now, and every little bit counts, so if you are seeing this and can spare even just $5, we’d really appreciate it. Donations above $25 are eligible for Free Tickets to Hurricane Harbor and donations above $39 are eligible for Free Tickets to Six Flags, both tickets are good for the whole season, not just the day of the walk! Thank you, and hope to see you there! Join Our Team

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  • Team Micah Mason is gearing up for this year’s DFW Congenital Heart Walk! Come join us August 21st, 2021 in the Six Flags Parking Lot anytime from 8am to 10am! If you’d like to join our team or help us reach our goal of $1,000.00 please click on the link below. We’re over $800.00 now, and every little bit counts, so if you are seeing this and can spare even just $5, we’d really appreciate it. Donations above $25 are eligible for Free Tickets to Hurricane Harbor and donations above $39 are eligible for Free Tickets to Six Flags, both tickets are good for the whole season, not just the day of the walk! Thank you, and hope to see you there! Join Our Team

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Resources for Parents

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Micah's Story

Our Journey with Micah

  • This is Micah, or Micah-man as we like to call him. He is the name-sake of the foundation. Born in 2015 with HLHS he has undergone two procedures known as the Norwood and Glenn surgeries to re-purpose the right side of his heart to function as his whole heart. He still has another surgery on the horizon, the Fontan surgery which will complete the re-purposing.