Children and Incontinence

At my son’s last appointment with the pediatric urologist, my son and I, along with his father, our daughter, and my mother, all crowded into the tiny exam room to discuss my son’s upcoming surgery.  It was funny – especially when the doctor came in pushing a large cart with his computer on top and I wondered if we’d all have room to exhale – but it was also kind of touching.  We all want so much for my son to be as happy and independent as possible, and to know that whatever it takes, we are all behind him (literally!).

My son has Spina Bifida, and like most people with the condition he has dual incontinence (bowel and bladder).  Since the age of four, he has drained his bladder every four hours with a catheter, and done it himself!  Nightly enemas keep him from having bowel accidents.  The double surgery will both tighten up his bladder neck so he no longer leaks between catheterization, and put a stoma (a small opening) in his tummy through which he’ll give himself a daily tap water enema.  The surgery will serve to make him more independent, in control of his daily elimination.  He is understandably nervous but also excited about the surgery ushering in a new era for him.

From my son, I have learned that parenting a child with incontinence requires patience, empathy, and a healthy sense of humor.  But like any other special need, managing continence becomes just part of your daily routine.

What causes incontinence?

Of all the medical issues your child can face, incontinence is probably one of the least talked-about.  But it is more common than you might think.  Incontinence, the inability to control the function of the bowel, bladder or both, can be caused by a number of different problems.  Birth defects, such as Spina Bifida or Cerebral Palsy, can limit nerve function and control of both bowel and bladder.  Imperforate Anus, a condition where there is no opening in the rectum at birth, is corrected with surgery but can sometimes cause long term bowel issues.

Also, chronic constipation can lead to a condition known as “Mega Colon,” in which the colon becomes too stretched out to properly retain stool.

Beyond these causes, there are a number of congenital anomalies and diseases that can affect continence.

What treatments are available for incontinence?

Urinary incontinence due to chronic conditions like Spina Bifida may need to be managed through a routine of catheterization to drain the bladder.  Some medications can help control bladder contractions.

For bowel incontinence, the treatments can include added dietary fiber, laxatives or enemas.  Surgeries are sometimes an option in both bowel and bladder incontinence.

What is the quality of life for a child with incontinence?

The questions foremost on parents’ minds may be, “How will continence problems affect my child?  Will they be able to live a normal lives?  Will it affect them socially?”  There is no reason to think your child can’t have a full and rewarding life, even if they have chronic continence issues.

Obviously you will want to make your child as independent as possible.  The surgery my son will have will give him more control and make him less dependent on others.  It should also ensure that he has no more bowel or bladder accidents.

Avoiding bowel accidents is part of the whole bowel program goal.  It’s important not just for health reasons but for social ones as well.  As my son’s urologist says, if you have a bowel accident, everyone knows it!  But once your child is on a bowel management program, whether it involves nightly enemas, biofeedback, or dietary changes, it will become part of your normal routine!

While I can certainly think of ways in which bowel and bladder management has been a challenge and sometimes even a frustration for our son, I cannot think of anything that it has held him back from doing.  He swims (wearing a special garment under his swimsuit in case he were to leak), does karate, tap dances, and does all the other things kids his age do.  We have benefited from bowel and bladder management advise from some wonderful pediatric urology doctors and nurses, as well as from other parents of incontinent children, I truthfully believe that my son’s buoyant spirit is the best management tool of all.  He takes things mostly in stride and has not let his challenges get in the way of him doing anything he sets his mind to.

For more information:

http://www.mayoclinic.com

http://emedicine.medscape.com

Dr. Alberto Pena at http://www.cincinnatichildrens.org