After a complicated pregnancy and a difficult birth, Emil was born. He had spina bifida, which was quite a shock for his parents. "Emil was transferred to Lund (hospital in Sweden) for immediate surgery and the whole thing was very confusing and shocking," explains Emil’s father, Tommy.
Emil came home and the confusion continued. A few months later, two aunts came to visit and Tommy heard about a network of families who were in exactly the same situation as them and realised that there was hope of getting help.
Emil cried day and night, mostly because he was very constipated. No medication had been prescribed for his stomach so Emil’s father contacted a dietician - but she knew nothing about spina bifida and could not help them either. Emil was tested for allergies but things got no better. "Then we were lucky to get help from very capable nurses," says Tommy.
We’ve tried everything
"We’ve tried almost everything to solve Emil’s bowel problems. In the beginning Emil wore nappies just like any other child of his age, but the constipation was a constant problem". They tried different types of laxatives. But when using these products everything Emil eats, both at home and at the kindergarten, has to be recorded. "I had to measure and weigh everything, otherwise his stomach just didn’t function well. Finally we found something that worked much better," says Tommy.
Changing clothes two or three times a day
Tommy also tried irrigating with water but without much success. Emil is very prone to spasms and was never completely emptied. "It took a long time and in the beginning he was often red raw. The whole procedure was very uncomfortable for him and he didn’t want to move around because he leaked all over the place. Often he had to be changed two or three times a day. If you’re not persistent with the emptying procedure, he gets constipated, very nauseous and vomits. I wasn’t very good company for Emil," says Tommy. "The only time we were together was when I pestered him with what had to be done. I wonder if Emil would have stayed here with us if he was given the choice."
After a while Tommy found a way to improve the irrigation of Emil’s bowels by making his own connectors and tubes and a rubber cone to stop the flow. His solution was far from perfect but much better than before.
Trial kit is instant success
When Emil was 3½ years old, Tommy heard of the Peristeen Anal Irrigation System via the internet. (Peristeen Anal Irrigation is a complete system providing a controlled irrigation process). Through the clinic he later got hold of a trial kit and was very keen on trying it out on Emil. It was an instant success.
"The whole procedure took no more than 30 minutes and his bowels were completely empty. Emil felt good. I never thought we would find anything so good," Tommy explains. "Suddenly I had spare time in the evenings and could get to bed before midnight. I even had time to do the dishes and the washing."
Today Emil lives a normal life. He can eat whatever he wants whenever he wants. To make Emil’s bowel emptying every second or third day a pleasant and peaceful break, Tommy has installed a DVD recorder in the bathroom. "Now it sometimes takes more than 30 minutes, but that’s only because Emil wants to see the end of the movie," Tommy says with a laugh.