Adopting a child with cleft lip and palate: a study of parents' experiences

Adoption of Chinese children with cleft lip and palate (CLP) has become increasingly more common in Sweden. The aim of this study was to examine parents' experience when adopting a child with CLP. Since 2008, 34 adopted children with CLP have been treated in our department. A questionnaire was sent to 33 of the families and 30 of them answered (91%). The parents had queued from 1 month to 8 years before they were offered a child. Eighteen families reported that they received information on CLP from the adoption agency and 87% contacted the department of plastic surgery for additional information. In 15 cases (45%) previously unknown medical conditions or birth defects other than CLP were discovered in Sweden. Most parents (67%) had been informed before the adoption that their child could be a carrier of resistant bacteria, but not all had received enough information to grasp what it implies to be a carrier. The great majority of the families did not feel that the early hospitalisation for the first operation had a negative impact on the attachment between them and their adopted child. They thought that the aesthetic and functional results of the operations were "better than expected". Seventeen families stated that people react to the cleft and four of them think that the reactions are a problem. Presumptive adoptive parents should be informed that the child might have unsuspected medical conditions, resistant bacteria, what carriage implies, and that needed treatment and long-term results are not predictable.