Prognosis
While infants successfully treated for HLHS have a good chance of survival, they may experience chronic health problems for the rest of their lives. The 3-stage surgeries were developed in the early 1980s with no survivors prior to that time. Therefore, the earliest survivors are in their early 30s and the long term prognosis is unknown. However, the advances in surgical and medical techniques have helped increase the survival rate dramatically since the surgeries were first developed.
As is true for patients with other types of heart defects involving malformed valves, HLHS patients run a high risk of endocarditis, and must be monitored by a cardiologist for the rest of their lives to check on their heart function.
The three stage Norwood procedure only increases the life span of the heart as HLHS cannot be cured. The child may need a heart transplant at some point in the child's lifetime.
There is an extensive network of parents and children who have experienced this problem, and a number of targeted small press publications and websites.
Patients receiving the Fontan Procedure have an increased incidence of "Plastic Bronchitis."
Read more about this topic: Hypoplastic Left Heart Syndrome