Children with Special Needs: Toilet Habits After Malone (MACE) and Mitrofanoff Procedures
Before my son Ben had the Malone (MACE) and Mitrofanoff procedures, he would have 8-10 bowel movements a day and left urine puddles on the floor. In this video, I talk about about why we decided to have these procedures, how it’s helped and the steps we take for Ben’s morning toilet time.
A Little Background on Ben
My son has Hirschsprung’s Disease, which basically means that when his colon started forming, toward the end it didn’t form the nerve cells properly so it doesn’t function the way it should. He had to have part of his colon removed as a child. We had a lot of trouble with fecal incontinence after that. He would have a bowel movement 8-10 times per day, which was quite overwhelming.
We discussed options for managing this issue with his doctors at the Bowel Management Program at Cincinnati Children’s Hospital. They recommended the Malone Antegrade Continence Enema (MACE) procedure, which we did, and it’s worked wonders. In this surgery, Ben’s appendix was pulled up to his belly button. Now we insert a catheter into his belly button and flush fluid into his colon to prevent bowel accidents.
How Down Syndrome Affected Our Decision
Ben is also a leukemia survivor. During early stages of cancer treatment, we were potty training him for urine. The cancer treatment damaged the nerves of his bladder so that he was not able to relieve himself of urine. He would need to be catheterized every time his bladder needed to be emptied. Well this didn’t seem like a good option because, in addition to his other conditions, Ben has Down syndrome. He doesn’t understand about good touch-bad touch issues. We were concerned about ourselves and other caregivers, including family members and teachers, touching him there every day. (That’s the same reason we decided on the Malone procedure. Some kids get daily enemas instead, but we didn’t want someone touching Ben there every day either).
When Ben had the Malone procedure, we worked with a urologist who happened to do the Mitrofanoff procedure. They use his appendix for that too. After both surgeries, half of Ben’s appendix is connected to his colon and the other half is hooked up to his bladder, all through the belly button. We catheterize and drain urine from the left side of his belly button several times per day to keep him clean and dry and ensure that he doesn’t have major urine accidents. He still wears a pullup for minor leakage, but before the surgery, he was making puddles on the floor.
Toilet Habits and Ben: Our Morning Routine
Every morning, we mix up a glycerin-water solution and put it in a special plastic bag. Then we insert a catheter into one side of his belly button and flush the fluid through, into his colon. The amount of fluid we use is tailored to Ben by his doctors at Cincinnati Children’s Hospital. It’s enough fluid to flush all the way through his colon to clear it. He usually stays clean for about 24 hours.
As Ben is getting his flush, he sits on the potty for about an hour and plays with his iPad (because what else are you going to do on the potty for an hour?!). We keep all the supplies handy in the bathroom. Once we are done with that and his bowel is empty, we drain his bladder through the other side of his belly button with a urinary catheter, which keeps him pretty clean and dry throughout the day.
Of course, we did have some doubts about these procedures at first. They’re considered major surgeries and he’d already been through a lot in his young life.
At the end of the day, we decided that he needed to have the dignity and quality of life that not soiling his pants and having major accidents would give him.
Ben’s gotten to the point where he’s used to it and its part of his life. It’s still a struggle, but he does pretty well with it. It helps to have his Shadow Buddy doll so he gets to do the procedures to the doll that are done to him.
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- Your Child with Special Needs: Preparing for a Child’s Surgery
- Best Advice for Parents of a Medically Complex Child May Be None At All
