Uglyhead

Perhaps you heard the story of the six year old Iraqi girl who had surgery yesterday to correct a birth defect which makes “her rectum, her vagina and her bladder empty into one confluence” (called a cloaca)? Hajer Sallem had been living with a colostomy since she was a few days old. Reports today said that the surgery failed because most of her colon had previously been removed by doctors in Iraq. Pediatric surgeons at East Tennessee Children’s Hospital were going to reconstruct a rectum out of the colon.

We followed the story closely in our household because our son Aidan was born with an anorectal malformation called Hirschsprung’s Disease.

Hirschsprung’s Disease is caused by the absence of nerve cells in the wall of the bowel. Collections of nerve cells, called ganglia, control the coordinated relaxation of the bowel wall that is necessary for bowel contents to advance.

Less than a week after Aidan was born he spent three days in the hospital with what everyone thought was a virus. The Hirshsprung’s went undiagnosed until over a week later when his pediatrician noticed that Aidan’s bowels were severely distended. Within a few days Aidan was having surgery to get a temporary colostomy and we were learning how to care for one.

Three months later Aidan had succesful pull-through surgery. It was and is a great source of praise in our lives. I sometimes forget how trying those months were. All the joy and hope that had been built over our firstborn was replaced with agony and fear. I still vividly remember the times in the middle of the night when Aidan’s colostomy bag would leak and I would have to wake up and gently, patiently change it at the kitchen table–all the while Pam was there holding our screaming baby boy still as tears streamed down her face.

For more information on Hirshsprung’s disease and other anorectal malformations, see the Pull-thru Network’s website (a resource that we found helpful at the time).