My son Daniel was born with a disorder that affects multiple parts of his body called VACTERL association (V – Vertebrae, A – Anus, C – Cardiac, T – Trachea, E – Esophogous, R – Renal, L – Limb). Out of the seven conditions, Daniel had complications with five of them including: tethered cord, imperforate anus, narrow nasal passages, one kidney, and club foot. Daniel had eight surgeries in his first two years of life.

One of our biggest challenges we are facing is potty training. Daniel was born without an anus. He had surgery for a colostomy bag the day after his birth. For a year we changed the bags daily and prepared for his reversal surgery which would allow him to pass stool normally. I always thought that once he didn’t have the colostomy bag anymore, that was it. We were done with that part of his physical disabilities. But I realized that was just the beginning.

Ever since Daniel had his reversal, his stool is very inconsistent; sometimes he goes a lot during the day, some days not at all. It led me to believe he was incontinent. It’s something I was concerned about so his surgeon referred us to a gastroenterologist to help with the problem. After seeing GI for about 6 months and no improvement or acknowledgement of the problem, I wanted to switch doctors. After talking with Nicholas’s GI doctor, I realized Daniel’s issue wasn’t a GI problem, but instead a colorectal problem.

I learned at Daniel’s first appointment with the colorectal doctor that his incontinence was actually constipation; which is why he was always going. He wasn’t letting everything out. I was shocked. I had no idea constipation could be that way. It was one of those eye-opening appointments where I thought one thing for a really time and then suddenly it’s wrong. I learned that colorectal doctors know within the first few days of a baby being born with anal malformation that they know whether or not they’ll be potty trained. Because of the condition Daniel was born with he has a high sacrum. This mean he may never be able to feel himself have a bowel movement. He could possibly never be potty trained in a normal way.

Daniel will need daily enemas for the rest of his life. Enemas actually help with potty training, because once it’s given, he would release everything all at once and be dry the rest of the day. Once he’s older he can have a procedure done where a cathetar goes through the abdomen wall and enemas are released that way instead of through the rectum.

I tried the enemas with him a year and a half ago when we first started seeing the colorectal doctor and he obviously didn’t like doing it. We then went to laxatives, but then I saw some behavior issues. However, it was hard to tell if it was the laxative or him just being a 2-year-old. We decided to take a break and see if he could potty train in a normal way and if he has feeling in that area.

Daniel is 3.5 years old now. In January, we tried potty training for a week. We had to stop because we bought a house and we didn’t think we’d be able to keep up with trying at the time. But I could tell just after that one week, he wasn’t ready. I anticipate trying one more time and then moving on to enemas. What’s difficult is that Daniel is still developmentally behind. It’s hard to decide on whether to keep trying until we know for sure he understands or to move on.

We are incredibly lucky to be living in a state where we have a colorectal team at the hospital. Colorectal doctors aren’t common, because it’s a specialty for a private area and doctors don’t want to do it, but it’s really important to talk about. They do a bowel management program every month to help people like Daniel with anal malformation. His doctor is one of the best in the country. I have complete faith that we will get this down and help Daniel be as comfortable as possible.