Paul and his son Tim, who is now 16 years old, were early adopters of TAI, so much so that they almost invented the therapy themselves…
Being a parent of a child with Spina Bifida requires a lot of strength, especially if you don't share the responsibility with someone. Paul raised his son alone, as his wife passed away when Tim was three years old.
"It has been tough years, of course. My time has been limited so Tim has been forced to do his part to make our life work. And he really has!"
Tim can walk and only uses a wheelchair when he gets tired, but the walking part is not what bothers him most. As for many kids with Spina Bifida it is the bladder and bowel management that are the hard and embarrassing parts.
When Tim was small, he soiled his pants more or less all the time, and he often had stomach ache. We tried everything; enemas of different varieties, medicines to soften the stool, specific food that seemed to work better… Everything!
When it was time to skip the diapers, the real challenges started. But Paul was determined to find a solution to Tim's bowel problems and created his own water enema. He realized that if he injected water or Klyx and stopped the fluid from coming out with a rubber funnel, he could help Tim to better empty his bowel.
He continued to develop his home built equipment using a bicycle pump and valve, still using the rubber funnel, but without the catheter or balloon that are used in irrigation systems now.
"I looked everywhere for advice. I surfed, researched, read and called everyone who could give me information, and finally we got the chance to try a prototype from a medical company. But that was long before there were catheters for kids, so they were too big, quite unpleasant and fell out often."
But further on when the equipment suited Tim better, it seemed like the family had found their bowel management method and could start to relax.
Before, I hesitated to go out or travel because of Tim’s bowel situation, but when we started transanal irrigation (TAI) it was life-changing. We could have a normal life knowing the bowel was empty. We didn’t need to find public toilets all the time or even stay at home.
When Tim was three years old, Paul started to perform TAI on him. From the age of five, Tim started to perform TAI himself with assistance from his dad. At the age of seven he was completely independent and did it himself, without Paul in the bathroom.
"I used to sit in the bathroom and read books for Tim when we waited for the water to do it’s job, but he tended to wish for the same book over and over again, so it was quite a relief when he started to kick me out", Paul says with a smile. "It was about independence of course, but also about making our life work."
Now Tim irrigates three times a week, and spends between 45 min and 1,5 hour in the bathroom. But today he is more interested in watching movies on his laptop.
"Today he doesn’t think about it much. It’s like brushing his teeth, it needs to be done."
Transanal irrigation might sound messy and complicated to perform but Paul is convinced that anyone can learn how to do it. He thinks that the attitude of parents is the key to success.
"I have met so many parents of kids with disabilities that over-protect their children. If you give them the confidence to use urinary catheters or transanal irrigation, they can and will do it. It’s when you tell your kids it’s hard and hurts, that you will have problems with the compliance."
