Background: Mothers that are pregnant with, give birth to and take care of an infant with congenital heart disease (CHD) are at risk to develop serious psychological and social problems. Today, advanced surgery saves the life of ever more severely affecte d children with CHD. Yet, we know little about their later development and the challenges facing their mothers. The planned study is part of a larger research effort on the mental health of children with CHD and their families. The basic study (HEARTKID) examining the mental health and development of children with CHD has already started. The planned study focuses on the children's mothers.
Objectives: 1. to screen mothers of infants with CHD from pregnancy through child age three for psychological and so cial problems; 2. to determine the influence of medical status and treatment and psychological risk factors in the mother and the child on maternal problems.
Method: We will use a case-control design and link two data sources: 1. the nationwide CHD-regist ry at Rikshospitalet, Norway. 2. the Norwegian Mother and Child Cohort Study (MoBa) that follows 95 000 children from the fetal stage. Among these children, we identified 400 infants with CHD and 400 children with minor CHD problems. The MoBa study includ es information about maternal mental health and social situation at gestation weeks 17 and 30, and information on the child's mental health at age 6, 18, and 36 months. Comprehensive information on the CHD diagnosis and treatment is available from the CHD registry.
Scientific importance: This will be the first population-based cohort study following mothers of children with CHD from pregnancy. The design, the early start during pregnancy, the length of the follow-up period, and the sheer size of the study are unique and allow a comprehensive description and analysis of the maternal psychosocial situation not previously seen.