A Hirschsprung Disease story

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My 12 year son was diagnosed with HD when he was 3 months old. He had shown symptoms from birth but had a misread biopsy at 6 days old. He required an emergency colostomy at 3 months. He had a pull thru at 6 months. As he got older it became evident that he still had issues. At age 5 we sought a second opinion which resulted in a redo pull thru and placement of a Malone. Six months after the redo pull thru he developed a severe small bowel obstruction from scar tissue. He spent three weeks in the hospital with complications. He did great with the repair and Malone for 2 years. He started developing scar tissue in the Malone and eventually he lost the Malone. Last year a new Malone was placed along with a chait tube. The chait wouldn't stay in place so this December went back to the regular Malone.