Ten Years With Hirschsprung’s Disease
Our son Micah, also known as Boy Wonder, was born with a condition called Hirschsprung’s Disease. This a birth defect that affects one in five thousand births. The Cliff Notes explanation of his version of the disease is that more than half of his large intestine did not have the nerve cells that move stool along and out of the body. He had to have this portion of his colon removed and the remaining bit reattached in a surgery called a pull through. He had this surgery at 3 days old.
From this point to now, the disease has been there, altering the course of his life and ours. He has struggled with many side effects, including bleeding rashes, lack of control over his bowels, major diet restrictions and dehydration among others. Through it all, he has fought with a cheerful determination and faith. However, we have always desired better for him and so, after many tests and scans and consultations, as a family we decided to essentially wipe the slate clean and start over. About a month ago, Micah had a complete revision of his pull through. The doctor cleaned out a lot of scar tissue during a seven and a half hour surgery and decided to go with a colostomy to allow his colon to fully heal.
This was not what any of us hoped for but we are adjusting to a new normal, for now. The ostomy is only temporary, and he is healing nicely. There have been some advantages for him along with the challenges. He can pretty much eat what he wants, including fruits that have been heavily restricted before and even sweets and candy, in moderation. He is no longer chained to the bathroom and has more freedom as a result.
Looking forward, we do not know what things will be like. The plan is to reverse the colostomy once he has healed sufficiently and then see if he has the control we hope for. What we do know is that this has given him the best opportunity for that and everything else is in God’s hands. In the days leading up to his surgery, we asked Micah if he was nervous and his response was typical for him. He said “No, I’m not worried. God’s got me.” And so, this is how we face the future. God has us.
