A review of adopted colorectal patients: a parent’s perspective

After treating many adopted patients with congenital colorectal conditions, our goal was to understand if parents were properly counseled about their child’s medical needs before adoption. A comprehensive questionnaire was developed. Recruitment occurred by social media and colorectal database. 48 parents participated. Adopted children were primarily male (60%), internationally adopted (75%), and a median age of 2.5 years (range newborn-13yo). While 96% of parents received medical records, 41% had incorrect/missing information. Most patients had an anorectal malformation (83%, Table 1), and a third had the primary pull-through prior to adoption (16). Nearly all required a surgical procedure after adoption (87%), including a redo pull-through (19%). Children were frequently incontinent of stool (83%) and urine (46%). In some families, the medical condition negatively affected the relationship between the parent and adopted child (12.5%), parent and other siblings (40.5%), and adopted child and other siblings (19%). 58% of parents state managing their child’s medical condition was more difficult than anticipated. Family, friends, and the medical team was noted as the most helpful support systems. We strongly recommend putting support systems in place, obtaining as much medical information as possible, preparing for possible lifelong management, and consulting with a specialized colorectal team before adoption.