adoptspecialneeds.org

What is it like to parent a child with Imperforate Anus?

Our son is a spectacular little boy, and it is a source of pleasure and unearned pride to parent him.  His life, now, includes spending about 45 minutes once a day sitting in the bathroom to void his bowel.  He uses that time to do homework, read, or watch a DVD on his portable player.  Otherwise, he lives the full, active and zestful life shaped by his intellectual gifts, his buoyant, outgoing personality, and sweet nature.  He is nine, now.  Our daily routine as his parents includes about five minutes preparing a salt-water enema which he uses for his daily clean out.

Some children with this condition achieve normal, or near-normal function after the surgical correction and do not require the artificial clear-out our son does; but our son was born with an absence of muscles to control his anus and therefore surgery cannot give him the typical physiology that most of us enjoy.  

What is it like to parent a child with Imperforate Anus?

Our son is a spectacular little boy, and it is a source of pleasure and unearned pride to parent him.  His life, now, includes spending about 45 minutes once a day sitting in the bathroom to void his bowel.  He uses that time to do homework, read, or watch a DVD on his portable player.  Otherwise, he lives the full, active and zestful life shaped by his intellectual gifts, his buoyant, outgoing personality, and sweet nature.  He is nine, now.  Our daily routine as his parents includes about five minutes preparing a salt-water enema which he uses for his daily clean out.

Some children with this condition achieve normal, or near-normal function after the surgical correction and do not require the artificial clear-out our son does; but our son was born with an absence of muscles to control his anus and therefore surgery cannot give him the typical physiology that most of us enjoy.  

What is Imperforate Anus?

I.A. is a birth defect (or one of a range of birth defects) in which the lower bowel does not reach the outside of the body – there is no anal opening allowing the bowel to empty of waste.  An infant born with this condition requires prompt surgery to install a colostomy or the child will die.  Later, reconstructive surgery – oft the so-called pull-through surgery is conducted to thread the bowel through the appropriate muscle structures to a surgically created anus.  The birth defect can be in various positions, and other organs may be affected.  The range is from low defects which can be completely repaired surgically, to high defects accompanied by malformation or absence of other abdominal structures, such and the missing muscles our boy has (he had a high defect).

What can we do about his or her medical condition?

Surgery is of course necessary, beginning with the original colostomy.  In our situation, our son had a series of surgeries in China, and all that could be done surgically was done there and done well.  However, the fact that he had a congenital lack of muscles meant that he could not achieve normal bowel function in the normal way.

We followed a dietary management plan, and using a combination of medications to slow bowel movement, and enemas for clean out, reached fairly effective management (meaning, few accidents during the day).  Then after regularity had been established, our boy’s surger conducted a simple surgery to install a small tube that established a passage to our son’s large intestine, from a tiny plastic hatch installed on his tummy and closed by a lid we refer to as his button.  This small plastic button opens to allow him to run the salt-water enema solution comfortably into the top of the bowels, to flush out his system in his once-a-day clean out.  It is simple, comfortable, and for us completely effective.  He simply does not have soiling accidents, nor constipation (another frequent problem of kids with IA) and he handle most of it himself.  For us, it is a five minute routine to prepare the enema solution.

That’s it.  The button has been changed once so far – an office visit, not a further surgery – in two or three years. 

Depending on the exact location and type of the defect, and the characteristic of different kids’ bodies, the treatment may be less extensive or different, and it is frequently different for girls and boys; but this has been our experience.

So, what does it mean to have Anal Atresia ( in daily life, school, sports)? But what about home life?

Right now, for our son, his condition makes just no difference to him (other than having 45 minutes sitting in quiet, for his homework or other things --- not really a bad thing).  He swims, plays sports, even has overnights with friends (by juggling his enema schedule he can safely have a normal overnight without having to do his chore in someone else’s house).  We all went car camping last summer for a week.  (We just packed our son a portable camping toilet to avoid tying up the campgrounds facility.)  Very few people he knows have the slightest inkling that he has a plastic button on his stomach, much less what it is for.

It was a while getting here, of course.  He spent years in a social welfare agency in China, where he was loved and sheltered but his condition wasn’t well managed.  When sent to a private kindergarten because he was recognized as exceptionally bright, he found himself teased and shunned by the community kids because of his diapers and odor.  Home in America, we moved him to pull-ups and a controlled diet to achieve management of the timing of his bowel movements. His school environment in America was understanding and his playmates forgiving, during that initial year or so in the pre-button days when accidents did happen despite all efforts  (a diet heavy on ‘constipating’ foods and eschewing fruits and the like, medication to stop his system, medication to start it) and he always had to have the extra change of clothing at school.  Doing it over, I would have done the installation of the button far earlier; it has made all the difference in the world – no more accidents at all.  We made it, and all that early effort recedes to the past.

He isn’t allowed to eat watermelon, still, and very little citrus, for fear of developing diarrhea but in other respects his diet has come to a perfectly normal one. 

Can we do this?

I’ll confess: when we committed to adopt our son, we thought that the indications were that he had gained bowel control, so we never really asked ourselves that question.  In retrospect, the answer is of course we could have, as we in fact have and the very idea that we might have been deterred is just chilling.  Americans have some special sensitivity about ‘poop’ issues; but frankly, if you can handle a baby and all the poop involved there for a couple of years, you can handle this (a good deal less challenging) esthetic issue for the time necessary to get in control.  After that, of course, it is a big nothing. 

If we adopt, what could our child with I. A. hope for in the future?   

For our son, the condition should make no difference to his future (which, as a mom, I modestly describe as dazzling), as it makes no difference to his present; he can take care of his whole routine himself if he needs to, at age 9, so he can be entirely independent.  As an adult he can look forward to a normal family life, as well as professional opportunities and a world of adventure and achievement.  He has no health issues – just this little structural difference, which our work-around handles splendidly.