Two adoptive moms share what it’s like to adopt children with a common, though not commonly discussed special need — anorectal malformation, or ARM. Because this is a sensitive need, all names in this article have been changed to protect the children’s privacy.
“William just turned 5 and he is amazing! He is so intelligent, inquisitive and goofy. He keeps us laughing all day because he has such a wonderful sense of humor. He has an amazing imagination and is constantly playing make believe or making up songs. He would be outside all day, every day, if he had a choice. He loves nature, bugs, animals, science, swimming, hiking, camping and getting really dirty.”—Tavia, William’s mom
“Tess is such a blessing. She brings us such joy. She is 6, almost 7 years old, but sometimes we say she is 6 going on 18 because she is so mature for her age. She’s very opinionated and will let you know exactly what she thinks! She doesn’t like going to school because she hates waking up early, but she always has a big smile on her face by the time I pick her up. She is such a beautiful, loquacious little girl.” — Sarah, Tess’s mom
Sound like anyone you know? These fantastic kids both arrived home from China in the past two years. Just like so many other children their age, they are busy bringing joy, humor and adventure to their families… Not to mention opinions of all kinds, bugs and even a little dirt! Their families could not be more excited to show off the precious children who are upending their worlds in the best possible ways.
But there is more than just the usual parental pride motivating Tavia and Sarah to share about their children. William and Tess both have anorectal malformations — often called ARMs, anal atresia or imperforate anus. Many children from China have this type of medical condition, but it’s not a condition that is widely discussed so many families aren’t familiar with it.
As Tavia puts it, “Nobody wants to talk about an anus or a rectum and most people have never heard of the condition.”
The unknown can be scary, and the box for anal atresia on the medical conditions checklist often goes unchecked. But these moms are excited to answer our questions about raising children with ARMs in hopes that their testimonies will give other families the information they need to say YES! Yes to being open to ARMs, and yes to the possibility of adopting one of the amazing children with this medical condition.
What caused you to check the box for anal atresia on your medical conditions checklist?
Tavia: After doing a little research, I spoke with a pediatrician to try and understand what this meant. It seemed to me that it could be managed with either surgery or some kind of a device like a colostomy. Since I know people who have colostomies, I knew that they really didn’t interfere with their lives at all and that [our child] could lead a normal life. At the time, I wasn’t aware that there are actually many more options besides the colostomy.
Sarah: Honestly, I don’t know that I checked the box. We found Tess’s information on the photolisting. I did the thing that everyone warns you not to do — I fell in love with her picture! We are both physicians and weren’t scared of anal atresia. We knew there would be challenges, but we also knew that she is a healthy child with a normal life expectancy.
How much did you know about ARMs before your child’s file was referred to you?
Tavia: I knew very little. I knew that it was possible to be born with malformations, but I didn’t know any specifics. I also knew that William had surgery in China to repair his malformation, but I didn’t know whether this “fixed” the problem or not.
Sarah: We are both physicians so we had general knowledge about this type of condition. I had never cared for a child with anal atresia. Our biggest concern was other issues that can go along with anal atresia — issues collectively known as “VACTERL association.” But because Tess was older, we knew that if she had anything else, it must be milder because she hadn’t needed earlier intervention. She was also doing well developmentally. We weren’t 100% sure she didn’t have other medical associations until after she came home, but we knew it wasn’t likely.
What are the most helpful sources of information you have found on this condition?
Tavia: Other than talking to his doctors, I have gotten the best information from a support group I joined on Facebook. William has a cecostomy tube — as opposed to a colostomy or another device — and I had never heard of this. I honestly hadn’t met anyone who had heard of it. So I joined a cecostomy support group and I have gotten so much information about ARM and different options for treatment. Even though [the support group] is for cecostomy, we talk about all the treatment options, different medical facilities, doctors, troubleshooting, and just provide general support. Unlike many groups, this is a very positive and supportive group of people who can speak from real life experience. Also, since I didn’t know anyone in our situation, it was a little frustrating at first — feeling like no one knew what I was going through — but I definitely found people who understand.
Once your child arrived home, what were the biggest surprises? What did you feel most and least prepared for?
Tavia: Honestly, the thing I was most surprised by when we came home was how easily and quickly William adjusted! You hear stories about attachment issues and other difficulties but we are proof that things aren’t always hard. I know we are probably the exception to the rule, but it was really very smooth sailing from day one. I think that would shock anyone who was preparing for a tough time. As far as the biggest surprise regarding ARM, again, it would have to be how easy it has been for William to adapt to getting his cecostomy tube. Kids are so resilient, it really isn’t a big deal to him. Maybe it will bother him someday that he has a tube, but for over a year now, he really couldn’t care less. That’s not to say that we don’t have bad days. Some days, he has tummy pain or stool accidents, but once it’s over, he goes right back to his normal self. The thing I was least prepared for was how little people know about ARM. Nobody wants to talk about an anus or a rectum and most people have never heard of the condition. It can make it feel a little isolating in the beginning, until you develop your support system.
Has your child needed any additional surgery since arriving home? Is she/he expected to need surgery in the future?
Tavia: William has had two inpatient surgeries and 13 outpatient surgeries. That sounds like a lot, and it is, but my impression is that it is not the norm. The two inpatient surgeries were to place his cecostomy tube and to do an anal strictureplasty. The 13 outpatient surgeries were to do anal dilations. William had surgery on his ARM in China and the doctors here think he may not have had proper follow-up because he had a stricture so tight that it made his anal opening too small for him to have a bowel movement. They did the dilations — which did not phase William at all — to stretch the anal stricture until the opening was normal size and stool could pass. Our surgeon told us it normally takes 2-3 dilations, but for some reason, William’s stricture kept getting tighter and so it took 13 times for it to stay open. Hopefully, William will not need any other surgeries, but it is a possibility. As of right now, the doctors don’t have any planned.
Sarah: Tess had a revision of the surgery that was done in China due to scarring. Since coming home, she has had a Malone procedure for her enemas. It was previously very traumatic for her to have to do the flush through her anal area, but now she can do it through her belly button.
What does day-to-day care for your child look like, related to their ARM?
Tavia: Because William has no control over his bowels, we use his cecostomy tube to flush the stool out of his system once every day. We run saline and bisacodyl through his tube and that washes out his colon and makes the stool come out. It takes about 40 minutes to do this, but there are people for whom it only takes 10. The rest of the day, you would never know he has a medical condition. He occasionally still has small stool accidents so he wears Pull-Ups right now, but we are tweaking what we run through his tube to find the formula to keep him clean. The doctors are very confident that soon he will be wearing underwear and won’t have any more accidents. One other thing that we have found is how important William’s diet is. We had a typical “American/Midwestern” diet before, and now we eat very healthy and clean. It is easier than I thought it would be and it has made a world of difference in his ability to pass stool.
Sarah: We do the daily flush through her belly button. It takes about 10-15 minutes, and another 25-30 minutes waiting on the commode for the flush to go through the large bowel. It has changed her life. It allows her to be a regular kid! She is now potty-trained, no more diapers! She’s no longer in pain and she doesn’t have difficulty with bowel movements. Her doctors think she will have the Malone for about a year. After that, she will always need to watch diet and fluids to make sure she doesn’t plug up and may need a stool softener or laxative at times, but she should be able to toilet pretty normally. Families should know that if you think you’re going to fully solve the bowel problem, you’re not. Some children with higher anal atresia may always have trouble with continence, but Tess’ condition is low. This may not be the right medical condition for a parent with a lot of concern about bowel movements. But the daily flush feels like a non-issue to us. If you look at the grand scheme of all the medical issues a child might have, this one is so minor!
Have you had any challenges related to your child’s ARM in social or care situations (day care, school, birthday parties, with a babysitter) and how do you manage that?
Tavia: We have not had any problems. His friends at school have no idea. The school staff has been incredibly supportive. I think he had two accidents this past school year and they were wonderful about helping him. In the beginning, before William had his cecostomy tube, I had to pay close attention to whether or not he needed his Pull-Up changed. For the first few weeks he was home, it was common to go through 10-15 dirty Pull-Ups a day so I was very conscious of us being out in public or with family or friends. I was very honest with people about what was going on, so they were discrete and accommodating if they noticed it before me. Kids that he played with never seemed to notice. The doctors all assured me that this was just temporary — the 10-15 Pull-Ups — and they were right. Now we go weeks, sometimes months, without an accident and it’s only going to get better. The only other thing we have encountered is that sometimes we have to miss an activity or rearrange schedules to make sure we get his flush done every day, but that isn’t a big deal. When he is older and wants to have sleepovers or all-day outings, we may have to have them only at our house or with us so we can make sure his flush gets done.
Sarah: Tess wasn’t accepted into the private school we wanted her to attend because she wasn’t potty-trained. It was a surprise to us. We didn’t expect our first hurdle to be from educators. I left that meeting and drove home thinking — “my child doesn’t need to be ‘better’!” I made more phone calls and although that first school did eventually offer to accept her, we found another private school that welcomed her with open arms. We have been very happy there.
How has adopting a child with ARM affected your family?
Tavia: Nothing better has ever happened! William is the most amazing addition to our family; he is an only child, but has lots of cousins. He brings us so much joy and all of his family members adore him! I hope that his cousins have learned acceptance and understanding of people who have special needs and that they understand that just because you can’t see that someone has a medical condition, it doesn’t mean it’s not there.
Sarah: Tess has brought us so much joy. She is such a blessing! We were warned by our social worker about behavior issues that might come up, but we haven’t experienced any of that with Tess (although we know other adoptive families who have). She had some tantrums early on when we couldn’t understand what she was trying to say. It was pretty typical; toddlers are impatient! But that was the only behavioral thing ever. Whenever she feels something, she lets us knows how she feels. We can’t believe how lucky we are to raise her.
What advice would you give a family that is considering adopting a child who has an ARM?
Tavia: Ask lots of questions and if they don’t know the answer, ask someone else! It’s not a well-known or discussed topic so it can be discouraging to get real-life information rather than just medical jargon. It’s not as scary as it sounds and people with ARM lead perfectly normal lives!
Sarah: Definitely explore the possibility of the association (VACTERL) and get as much information as possible about the heart and kidney to make sure there’s nothing too serious. Keep an open mind. The majority of kids won’t have abnormalities, and if there is one, it doesn’t mean it will be severe. Don’t let fear stop you from looking into a child with ARM. Ask questions and see if you can get the information you need to make a good decision.
For more information, please contact Alycia Fahr-Zarlons, match and advocacy coordinator for the China program, at [email protected].
