Neurodevelopmental disorder account for 30 to 60% of patients requiring cardiac surgery for congenital heart disease. Surgery before the age of one is a major risk factor of neurodevelopmental disorder.

In October 2020, Lille University Hospital has launched a pediatric cardiac surgery program with a systematic neurodevelopmental follow-up program for infants requiring cardiac surgery before the age of one. This program includes: a clinical evaluation by a neurologist the day before surgery and before hospital discharge with a specific neurodevelopmental care pathway divided in 3 categories: pathway A, B or C depending on several factors (type of congenital heart disease, associated genetic disorder, operative or postoperative complications, electroencephalogram or magnetic resonance imaging anomalies).

Between October 2020 and May 2022, 64 infants (300 [164–454] days) were included. Fourteen patients (22%) had genetic disorder. Thirty patients had curative surgery, 19 palliative cardiac surgery, 4 balloon aortic valvuloplasty, 11 were not yet operated. Eighteen patients were assigned to pathway A (general pediatrician follow-up with parental neurodevelopmental questionnaire at key ages). Twenty-six children were assigned to pathway C (specific follow-up in medico-psycho-social centers for children with disability requiring special treatments like a speech therapist, psychomotor therapist…). Six children were assigned to pathway B (neurologic systematic reevaluation 3 months after surgery before reassignment to pathway A or C). One hundred percent of parental questionnaires ASQ (ages and stages questionnaires) for neurodevelopmental follow-up were gathered at 6 months in pathway A and B, but only 64% in pathway C. In total, 100% of 12 months ASQ were gathered in pathway A and B, but only 82% in pathway C.

This specific screening for neurodevelopmental disorder program allows to identify fragile infants needing specific follow-up. Efforts still remain to be done in getting back the ASQ questionnaires in order not to lose any patients during follow-up.