A review of adopted colorectal patients: a parent's perspective.

ABSTRACT

PURPOSE: 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. METHODS: A comprehensive questionnaire was developed. Recruitment occurred by social media and colorectal database. RESULTS: 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. Table 1 Colorectal diagnoses Diagnosis Number of Participants Percentage (%) ARM (Unknown) 11 23 Cloaca 8 17 Cloacal Exstrophy 4 8 ARM No Fistula 3 6 Rectobulbar Fistula 3 6 Rectovestibular Fistula 3 6 Hirschsprung's Disease 3 6 Rectoprostatic Fistula 2 4 Spina Bifida 2 4 Rectoperineal Fistula 1 2 Rectovaginal Fistula 1 2 Rectobladderneck Fistula 1 2 Complex Malformation 1 2 Rectal Atresia 1 2 Rectal Stenosis 1 2 Idiopathic Constipation 1 2 Sacral Agenesis 1 2 Sacrococcygeal Teratoma 1 2 CONCLUSION: 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.