Clinical outcome and ethical perspectives of internationally adopted children with cleft lip and palate

Abstract

ABSTRACT This thesis aimed to evaluate clinical outcomes regarding surgery, craniofacial growth, speech and hearing, in internationally adopted children (IAC) with cleft lip and/or palate. An ethical analysis of the challenges for plastic surgery in treating IAC with cleft lip and/or palate (CL/P) was also performed. In Study I, a retrospective, cross-sectional study, compared surgery, speech and hearing outcomes between IAC and non-adopted peers, matched according to age, gender and cleft type. In Study II, a national registry study, IAC and non-adopted peers were compared regarding surgical treatment, demography and concurrent medical conditions. In Study III, a retrospective cross-sectional study, craniofacial growth was assessed and compared between IAC and non-adopted peers with unilateral CL/P. In Study IV, an ethical analysis was performed concerning the treatment of IAC with CL/P. Study I revealed delayed surgical treatment, more secondary surgery and velopharyngeal impairment, as well as slightly higher hearing loss among IAC compared to peers at five years of age. In Study II, national data revealed unfavourable surgical outcomes, more severe cleft types and more males among IAC. Study III revealed unfavorable maxillofacial growth among IAC, and in Study IV, ethical challenges and perspectives were identified concerning the treatment of IAC with CL/P. In conclusion, this thesis adds important information on treatment of children with complicated clefts, as seen in IAC with CL/P and also in children that deviate from standardised and well-known treatment plans. Raised awareness and continuous monitoring of long-term results are needed. Ethical issues of importance have been identified and cleft teams need to develop strategies to address important ethical challenges.