Hypoplastic Left Heart Syndrome
Leah was born with a congenital heart defect called hypoplastic left heart syndrome (HLHS).
A normal heart has two sides, where the right side receives blood from the body and pumps it into the lungs. The left side receives blood from the lungs and pumps it out to the body.
Leah's heart did not have a functioning left side. She is not alone, as around 960 babies are born in the US with HLHS annually.
This is a very critical congenital condition. Babies are usually born full term and healthy, but begin to struggle over the following few days. Without medical intervention, this heart defect is fatal.
These children will need their heart and lung circulation anatomy modified via surgery in multiple stages. Kids with HLHS most commonly have the Norwood within the first week of life, followed by the Bidirectional Glenn a few months later and finally, the Fontan. Each of these three stages is a major surgery with the possibility of complications.
After the series of three open heart surgeries are complete (often before 3 years of age) the infants are not cured. These children can have lifelong complications and will continue to require close medical supervision.