Background
Infants awaiting heart transplantation (HT) face the highest wait-list mortality among all children and adults listed for HT in the United States (US). We sought to determine the risk of death for infants <12 months old while awaiting HT in the current era, and to identify the principle risk factors associated with wait-list mortality.
Methods
We analyzed outcomes for all US infants listed for HT from January 1999 to July 2006 using data reported to the US Scientific Registry of Transplant Recipients.
Results
Of 1133 listed infants, 61% were <3 months of age, 80% were listed status 1A, 64% had a congenital heart disease (CHD) and 31% had cardiomyopathy. Of 724 infants with CHD, 25% were on prostaglandin (PG) and 27% had history of prior surgery. By 6 months after listing, 23% died on the wait-list and 54% were transplanted. Multivariable factors associated with wait-list mortality were weight <3 kg (HR 1.4, 95% CI 1.0–1.9), ECMO support (HR 5.6, CI 4.0–7.9), ventilator support (HR 2.1, CI 1.6–2.8), CHD with PG support (HR 2.8, CI 1.8–4.3), CHD without prior surgery (HR 2.8, CI 1.9–3.9) and nonwhite race/ethnicity (HR 1.8, CI 1.4–2.3).
Conclusions
One in four US infants listed for HT dies before a donor heart can be identified. Wait-list mortality is associated with weight under 3 kilograms, level of invasive support and CHD, but not listing status, which captures medical urgency poorly. Measures to expand infant organ donation, especially among neonates, are urgently needed.