Has this ever happened to you? You’re scrolling through a list of sweet little Chinese faces and suddenly the photo of a completely adorable child jumps right off the screen at you! You read the profile, genuinely intrigued. Then you get to the medical need listed and you think, “I don’t know what that is, but I really don’t feel safe googling those words.” We’ve been there. We can help you with that!
China calls it Imperforate Anus (IA) or Anal Atresia. But it’s important to note that US doctors now classify the special need as Anorectal Malformation (ARM). This is a better way to think of it, because the defect is not limited to just the anus itself. It covers a very wide range of severity and usually means that not only is/was there no anal opening, but there are also missing nerves, which then affects the ability of the colon to move waste normally.
After the initial surgery (or surgeries) to get the existing nerves and muscles optimized, almost all kids in this diagnosis classification need some combination of interventions to make sure his or her system keeps chugging along and doesn’t get backed up or off schedule. This help ranges from sticking to a specialized diet, onward to daily laxatives, all the way through doing a daily enema to clean out the colon for each day.
The challenge of parenting a kid born with an ARM is to find out what his or her unique system needs to work efficiently. Figuring out which intervention will work for your kid is truly a stinky labor of love. There is absolutely no way to know before the child comes home which of the options is going to work for him or her. Sometimes what works changes as the child grows up. What works with a toddler might differ from what works for a teen. The protocol you follow to keep your kid eliminating regularly with no accidents is called Bowel Management.
I Get By with a Little Help From My Friends.
We all know how crucial a good “mom village” is to navigating a typical adoption. The camaraderie, support, and commiseration all make the journey to our child more bearable. But when you bring home a child with an ARM, the “crucial” quotient goes through the roof. Seriously, our community of mommas get it like no one else does.
We lift each other’s eyes up off the mess (literally, the mess all over the bathroom floor!) and onward to the future. We remind each other that “it’s just poop.” We cheer each other on through long hospital stays. Accident-free days are virtual parties in our on-line group. Parenting kids with this type of need can be very isolating and lonely. Poop can be a real conversation killer, ya know? In this safety net of support, we normalize the journey for each other – it is very healing and empowering.
In addition to mommas who “get it” and are right where you are, our support group is also full of “Been There Done That” moms. They offer hope for what your new normal will eventually be. They have been through it all and have come through to the other side with children who are living fully, healthy, typical childhoods.
These mommas know this need inside and out. They may not be medical professionals, but they collectively have a shared body of experiences that make them pro’s at keeping a little body moving and grooving “down there.”
It’s like the knowledge of your mini-van that your local mechanic possesses. He’s not the engineer that designed the car, but he’s in there under the hood, and he knows what to try when that screeching, whirring, noise won’t quit. He’s got the tools, he’s got the experience, and he’s got the successful repair rate that shows he knows what he’s talkin’ about.
The BTDT moms are the same. The hope that they represent to new families who are learning and grappling with the steps to their kids’ healthy colons is immeasurable.
Also, we may be biased, but these IA moms have the BEST stories (we often use IA interchangeably with ARM). The “put your coffee down first before you read this” stories. The “laugh until your kids ask if you need to go to your room to calm down” stories. Never thought you could laugh at poop? Didn’t think medical interventions could go wrong so spectacularly? Please, join us! Just put your drink down first.
It’s Just Poop. Except It’s Not.
Here’s the thing.
When parenting a child with imperforate anus, or any ARM, you find yourself developing an amazing immunity to poop.
Really. Trust us.
Paradoxically, to help yourself and your child with daily management, you also must develop a hyper-focus, even an intrigue, about specific details of poop that is unnatural to everyone around you. Sometimes even to your spouse.
Conversations about quality and quantity become commonplace. You’ll be adept at detailed discussions of the volumes, consistencies, and color. Don’t even get me started on what makes the best “tracer foods!” You develop your lingo, you find your groove, and you talk frankly and openly about this topic that so much of our culture finds distasteful. But it’s so very necessary. Daily, large volume, completely emptying poops are vital to our kiddos’ health. To our kids’ successful navigation of the rest of their life beyond the bathroom and the safety of your home bowel management protocol.
Additionally, if you want awesome opportunities for building health attachment with your child, this need is a gold mine of parent-child interaction. Every day you show you care by being interested in their diet and bodily functions.
You think M&M’s games are good for bonding? Try counting partially digested corn kernels together! Nothing shows a kid they are loved unconditionally more than being fascinated by their poop. So, it’s just poop. But it’s so much more than that at the same time!
It’s Not Just What You Know.
While we would never suggest that you skip a file review from a reputable adoption clinic, we also think it’s imperative to have your prospective child’s file reviewed by an expert in the field of ARMs. You cannot learn enough about what other families have learned and experienced. But you must go beyond anecdotal and experiential knowledge of the BTDT mommas – even as fantabulous as our FB support group may be (and trust me, we are!).
You cannot learn too much before you travel about this group of needs. You cannot learn enough about the options and treatments that this child might encounter once home. Pore over the websites (this one is a good starting point!), dig into the research, learn what is typical presentation for girls, what is common for boys. Study up on VACTERL – get familiar with the other needs represented by that association of anomalies. They look and sound scary at first glance but knowledge is power.
The more familiar you become with it all, the more you know what you might face, the more equipped you are to make the best choices for your child. It might feel like you went back to school for a B.S. in poop. (Did ya see what we did there? We’re so punny!)
Trust us. You won’t regret knowing what you know.
It’s Also About Who You Know.
It is necessary at this point to break some news to you: all doctors are not created equal.
Something you learn quite quickly when you research ARMs is that there are not many pediatric experts in the US. Many doctors will tell you they know what to do, but the actual number who have treated enough patients to become good at understanding this complex need, is very low.
It is imperative that you know that this body of needs is not one that just any old pediatrician or even pediatric GI can or should handle. For that matter, you should be aware that there are truly only a handful of skilled, highly qualified and experienced pediatric surgeons in the whole nation who are equipped to handle this need, especially if the file lists the child as “post-op/repaired.”
Here’s why: imperforate anus is a rare defect that has a high likelihood of surgical intervention. On the tail end (pun fully intended!) of the one or two surgeries, will come what is called bowel management.
That means that a surgical repair does not fix everything.
This is not a “once and done” type of special need. But. Don’t let that scare you. But do. A little bit.
Bowel management is the key to your success. Walking through effective and comprehensive bowel management cannot and should not be done by any old GI. Unless you get lucky geographically, you are going to have to travel for care. What you learn is that it’s not as big a deal as you think. After all, you went all the way to China to get this child! Surely you can manage some interstate travel to make sure your child gets the best outcome possible. When you talk to the BTDT moms and hear their stories, you realize that going to the expert doctors first saves time, energy, trauma for your child and a whole lot of stress-eating for you.
These few select specialists and their teams know what to do and have the support systems in place to make your life easier. Getting it right is too important to your child’s overall health, to his or her dignity, and to your family’s success in this adoption. Choose a doctor whom you know will do it right.
We hope that we’ve enlightened you, scared you (just a little bit), entertained you, and empowered you.
Now we invite you to consider if you are the kind of person who is ready to take on the challenge of a child with an anorectal malformation and receive the overwhelming rewards of parenting these amazing kids.
They are fighters and, in many cases, survivors.
They deserve the best advocacy and fight their family can offer.
About the Authors:
Daria Dammer and Tracy Whitney met several years ago while carpooling to a regional adoptive moms’ event, before either of their children with ARMs came home from China. They’ve spent the last three years bonding over poop stories, surgical experiences, and a mutual passion for improved parent-preparation and post-adoptive support for all needs within the China Adoption Community. They are now parenting children with ARMs who represent vastly different presentations on the range of ARM needs and have both found their new normal through support and lots of wise-cracking together.