Background Congenital heart disease (CHD) is the most common birth defect affecting approximately 6-8:1`000 life born children. Swiss recommendations suggest systematic evaluation of development at 1, 2 and 5 years of age after open-heart-surgery during infancy to accompany and consult families, detect developmental delays, and to initiate early interventions. The implementation and parental acceptance of these recommendations has not yet been examined.
Methods Our study includes 175 out of 202 children with CHD (born in 2015/2016) in whom open-heart surgery on cardiopulmonary bypass was performed at the University Children’s Hospital Zurich in the first year of life. Exclusion criteria are death (n = 21) and residence abroad (n = 5). Retrospectively, we collected data out of medical reports from 143 children with a CHD and conducted a semi-structured telephone interview with the parents. We conducted 135 telephone interviews and from these, 52 parents filled in a comprehensive survey.
Results Of the 143 participating children (52% male) 56% had a cyanotic CHD. 118 (82%) out of 143 children received at least one follow-up (FU) assessment. In this group 82% of the children received the first FU during their first two years of life. Of those children who received a FU, 49% showed at least one developmental delay and for 40% at least one therapy was initiated. The parental feedback about the FU’s was very positive: The FU’s were rated helpful in 82%. From the 25 children, who did not have a FU, 16 parents expressed that they were not aware of the necessity of a FU and in 11 cases agreed to come to a FU subsequently.
Conclusion The FU-rate in our study population and the parental satisfaction with the FU’s were high. However, some parents were not aware of the potential risk of developmental delays and the possibility of specific FU’s. Ways to address the parents are to repeatedly include this information in routine consultations and by contacting them by phone.