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

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.