Working at Cincinnati Children’s gives me the opportunity to meet inspiring families. Recently, I met one mother who told me the story of how she wouldn’t stop seeking answers for her son. And when she did find the answers she was looking for, she wanted other families facing the same condition to benefit from learning how they were able to find a ‘new normal’ for him.
But because her son was born with an anorectal malformation, she wants to keep her son’s identity private. This is an understandable and common sentiment for the families of children with colorectal conditions. As parents we want to protect our children and their privacy as much as possible, and colorectal conditions are not talked about as openly and freely as say, heart conditions.
I am honored to share her story:
My first introduction to the condition called anorectal malformation (ARM), also known as imperforate anus or anal atresia, was on a mission trip to China. I was at an orphanage called Maria’s Big House of Hope loving on some orphans with special needs. A friend of mine fell in love with a little girl with an ARM. All I really knew about this condition was that it involved A LOT of diaper changes and the possibility of never being able to have bowel control.
Fast forward two years later…my husband and I decided to adopt a child with special needs from China. On our medical checklist, we decided to accept a child with an anorectal malformation. Three months later we were matched with a little boy who had this medical condition.
At the time, we really still did not fully understand anal atresia and what it meant for this child’s medical condition. We knew this little boy was ours, but we still felt the need to call a family friend who was a doctor to get his thoughts. He was not very familiar with the condition. He made a few phone calls and basically told us that this child could be in diapers for the rest of his life. He was ours from first sight, so this new information did not deter us. We felt diapers for life was definitely something we could handle.
One year later we were able to bring our son in to our home. He is a very active, fun loving, and a precious little boy. He was three and a half years old when we brought him home, and we received a few pages of his medical history at this time. We learned on this documentation, which we had not known previously, that he had a colostomy, a reversal surgery, and a surgery to “fix” him.
I don’t think I can even begin to attempt to count the number of diapers we changed during our trip from China to bring him home. I had to go buy and borrow diapers. You don’t typically expect a three and a half year old to still be in diapers. Since he had no muscle or bowel control, he was not able to be “poop” trained.
This was an issue for us as we brought him home and attempted to find him a preschool to attend. Most preschools do not accept children past age three that are still in diapers. We were fortunate to find a preschool in our hometown that accepted children with medical assistance needs.
During this time, I met another mom who had a child born with an anorectal malformation. We were able to talk and compare notes. Her journey was a little different because her child was able to have a successful surgery after birth. However, her child was still struggling with bowel control at age 3 as well. She told me about the morning routine at their house: laxatives and sitting on the potty for 30 minutes. She also told me that despite this morning routine her son was still having accidents throughout the day.
We attempted to discuss this medical condition with our doctor. She was not very familiar with it. She was wonderful and went out of her way to ask around the office to see if any other doctors had patients with this condition. We were referred to our local children’s hospital to meet with a gastroenterologist. This was not successful for us. We did not feel like we were getting the help that we needed. In defense of the doctors trying to help us…not everyone can specialize in everything!
Feeling defeated, we began to search the internet for help. Our first Google search was something along the lines of: adopted children from China with anal atresia. It led us to a blog…I wish I would have written it down… about a boy who had an anorectal malformation and was treated at Cincinnati Children’s.
We jumped on the phone and called the Peña Colorectal Center immediately. The fact that Cincinnati Children’s was 5 hours from our house did not deter us one bit from getting our son the care he needed.
After the paperwork and phone discussions we were given an appointment with Dr. Dickie. It seemed she and the Colorectal Center had the answers we were so desperately seeking.
We went to Cincinnati Children’s for our first visit and it included several tests. We met with Dr. Dickie from colorectal and a doctor from urology. We honestly had no idea why we need to meet with a urologist, but we realized later how thorough their approach was.
We began our journey with the Bowel Management Program, starting with the enema trial. It was definitely a bit messy at first as we were learning the routine of it all. However, the end result was worth everything we went through – our son was out of diapers and wearing underwear for the first time!
After that point, Dr. Dickie determined he would need a “clean-up” surgery, or a re-do post sagittal anorectoplasty, following the original procedure he received in China. We learned that due to the initial repair, our son’s ‘new’ anus had been mislocated and had quite a bit of scarring on the perineum.
After going through these two major treatments, we now have a “new normal.” Our son is now staying “clean” and going to big school just like the other kids his age.
We have now been a patient with the Peña Colorectal Center for more than two years. We have gone from thinking our son would be in diapers all his life to finding a way to give him a “better” life.
While we are still on a medical journey with our son, the nurses at the Colorectal Center are always available to answer our questions as they arise, and Dr. Dickie continues to support and encourage us along the way.
We are extremely grateful parents. And my biggest message for parents of children with anorectal malformations is – don’t lose hope! There are treatment options available out there to help your child live a “new normal” way of life.
Editor’s note: Dr. Dickie is hosting a live, online Q&A for families with children diagnosed with anorectal malformations tonight, May 20, from 7-8 p.m. EST. She will be available to answer your questions during this chat in real-time. Watch a video recording of the Q&A session on our YouTube channel.