1996–2017: A humanitarian action for 3000 children with congenital heart diseases from developing countries

Abstract

Mécénat-Chirurgie Cardiaque is a humanitarian association whose mission is to enable children suffering from cardiac malformations to come to France to access the care that is not available in their native countries. The purpose of this study is to analyse the follow-up of the children managed since the creation of MCC. We reviewed all patients, and analysed long-term survival. Since 1996, 3000 children were entrusted, from 66 different countries, mainly from sub-Saharan Africa (68%). Mean age at venue was 7 years old. Main diagnosis were tetralogy of Fallot 25%, VSD 16%, acquired valvular diseases 16%, complex congenital heart disease: single ventricle, pulmonary atresia with VSD, DORV, D-TGV 5% each, truncus arteriosus 2%. In total, 2728 children came to France once, 119 twice, and 11 three times or more. Seven children died before surgery. Among the children, 228 were withdrawn for surgery, mainly because of pulmonary hypertension or overly complex heart disease, or because of venial disease. Among the children, 2765 underwent surgery or intervention. Postoperative mortality has been 2.2%. After a mean follow-up of 4.4 years, 401 children were lost to follow-up (13.4%). At last follow-up, 291 children were dead at a mean age of 10.5. Mean delay until death was 2.3 years. Survival rate at 5 and 10 years was 89% and 84% in operated children, and 74% and 62% in non-operated children respectively, in Fallot 95.4%–94.9%; VSD 94.9%–91.1%; acquired valvular diseases 77.9%–68.5%; single ventricle 78.2%–71.7%. With low operative mortality for often very severe heart disease, and good long-term follow-up, the management of children from countries without cardiac surgery is justified by survival similar to that of Western cohorts - except for acquired valvulopathies, presumably because of the difficulty of anticoagulant treatment. Thus our humanitarian action must continue, and improve for an optimal management of the disinherited populations.