The story of Dawud
Dawud was diagnosed with hirschsprungs disease at birth. It is a congenital condition that affects 1 in every 5000 births.
It occurs when certain nerve cells that are normally present in the wall of the intestine do not form properly during fetal development.
In Hirschsprung’s disease the affected colon and rectum is missing the nerves (ganglion cells) that allow it to relax and therefore the rectum and colon is squeezing all the time, which prevents gas and stool from passing. The stool and gas is then stuck at the level above the diseased intestine. Making it really painful for the kid.
Total colonic hirschsprungs disease accounts for 5 to 10 % of hirschsprungs cases. Dawud’s biopsy taken during his first surgery showed that there were no ganglion cells in any of the samples taken. Proving that he has Total colonic hirschsprungs disease. He underwent ileostomy on his 9th day and Swenson pull through at the age of 7 months. He kept getting enteritis after pull through. In 2017 he underwent adhesion removal surgery. But it did not help much. Stomach pain and visible peristalsis was seen often. He underwent multiple contrast enemas in (2014, 2015, 2017, 2018)all of which demonstrate that he had hugely distended proximal bowel and a persistently narrowed segment proximal to the pull through segment. Not knowing what was happening to Dawud I went from one doctor to another. And finally met Dr. Caroline in the year 2019. She told me what was wrong and what needs to be done but the full treatment cannot be giving in Maldives so we flew to Bangalore . There we met Dr .Sai Prasad. He agreed with Dr.Caroline, he said that Dawud has to have an ileostomy until his intestine decompressed. During the surgery the doctor corrected his adhesions as well. Had ileostomy for 6 months and closed the stoma after a contrast enema and a biopsy confirming that his intestine had ganglion cells and the previously dialated loop had decompressed. He did not have pain for three months but pain came back follows by visible peristalsis . His intestine is dialated again. Now we do daily irrigations to help release the gas and pain. We haven’t found any other kid like him in Maldives yet. Sometimes he feels really sad that he has hirschsprungs disease. But other times he is happy to be a special kid of Allah (God). Really hoping and praying that Dawud gets to live a pain free life.