02/28/2026
Haley was born with ABCA3 surfactant deficiency. It is an extremely rare, often fatal genetic lung disorder, with an estimated prevalence of less than 1 in 1,000,000, although carrier rates are much higher (1 in 33). It causes severe, untreatable neonatal respiratory distress, though some milder variants exist. It is the most common inherited cause of surfactant dysfunction, accounting for 30–40% of such cases. The disorder is considered very rare, typically presenting as fatal respiratory failure in newborns.
While clinical disease is rare (less than 1 in 1,000,000), some estimates suggest that if all genetic variations were fully expressed, the rate could be higher, but the clinical reality is that severe, diagnosed cases are infrequent.
The disease causes severe breathing difficulties (respiratory distress syndrome) shortly after birth, leading to high mortality without a lung transplant.
There is no known cure, and treatments are mainly supportive. Lung transplant is often the only definitive treatment for survival in severe cases.
