What is the life expectancy for someone with Barth syndrome?

Heart disease and the risk for infection bring the greatest risk for mortality and morbidity in people with Barth syndrome. If either of these are severe enough, life expectancy can be limited to the first few years of life. Improvements in medical care have increased this, and one 2013 study showed that a risk for early mortality seemed to peak in the first few years of life. New treatments and increased awareness continue to keep people with Barth syndrome healthy.

Other Questions About Barth syndrome

• Why does Barth syndrome cause heart problems?
• Who else in my family should have testing for Barth syndrome?
• What specialists should I see for Barth syndrome?
• What should parents and siblings of people with Barth syndrome know?
• What should I know about the diet for children with Barth syndrome?