Congenital heart disease (CHD) is a critical healthcare issue and the primary cause of birth defects. Neurodevelopmental disorders (NDD) are increasingly recognized as the main extra cardiac comorbidity, with significant practice variations in NDD screening and care across centers. We aimed to assess parental experience, which remains understudied.

A French nationwide, cross-sectional online survey was e-mailed to parents of CHD children in May–June 2025, exploring modalities and timing of disclosure of the neurodevelopmental risk, access to appropriate resources, care pathways, and parental perceptions.

Of the 293 parents who replied, 184 (62.3%) had a prenatal diagnosis, 189 (64.5%) a child with critical CHD and with an associated extra cardiac anomaly in 153 (52%). Most parents (56.3%; parents of critical CHD kids: 49.7%) declared being unaware of the NDD risk, whilst an appropriate information had been delivered by healthcare providers in 127 (43.3%), although 83% of them never received documentation, guidance or contact of patients’ advocacy work. Of the 290 (99%) parents who would have liked to be informed on the neurodevelopmental risk, 37.5% would have liked receiving this information antenatally, 25.6% postnatally but preoperatively, 27.3% postoperatively and 28% later on along the follow-up. Neurodevelopmental delay or NDD was diagnosed in 120/210 (44%) CHD children aged 3 years-old, including 77/189 (40.7%) critical CHD children; 11/120 (9.2%) were actually followed in a multidisciplinary perinatal healthcare network; 75% reported that their child's NDD care was not coordinated by a given healthcare provider, although 48% believed this role should remain to their referring pediatric cardiologist. Overall, 71% parents felt the quality of the delivered information was insufficient, whilst 54% disclosed this announcement has had a major/massive impact on their daily life.

This nationwide survey highlights insufficient attention paid by healthcare providers to appropriately inform and assist parents on the neurodevelopmental risk of a CHD child. This underscores the critical need for timely and appropriate communication skills and strategies to foster integrated patient-oriented program, and should prompt pediatric cardiologists to work even closer with patients’ organizations and to engage CHD infants/children in multidisciplinary healthcare networks.