Hydrocephalus Canada

Building patience in the company of Barbie

Print PagePrint PageSend by emailSend by email

Lieke will sit on the toilet for 20 minutes every second day waiting for her bowels to empty. At the age of three she is happy to play with her Barbie dolls – and when she learns to read, a good book or magazine will fill her periods of waiting.

Being a bright child with lots of energy and courage, Lieke is ready to start pre-school. She will go to the same primary school as her sister Eline, who is 5. Lieke faces certain physical challenges because she was born with spina bifida (a lower spinal cord deformity). She is fast learning to walk after two operations to straighten her legs. Her persistence is admirable.

Starting school is a challenge to any child and Lieke’s parents obviously wish to make her new social life as problem free as they can. Her walking problems are lessening and every new hurdle she passes is a victory for her and a reward for her parents. "It’s difficult to say with spina bifida children how they will develop, so we just have to wait and see," says Lieke’s mother, Ina, who is a nurse.

Removing an obstacle to social acceptance

"We would like to remove the social obstacle of Lieke having no control of defecation," says Ina. "Because of the smell it would be problematic (embarrassing) for her to use diapers in school, so we have been trying to find the best irrigation solution. We first tried enemas, but as Lieke has a weak sphincter, the water would not stay in her bowel long enough to empty it completely. Lieke gets laxatives to prevent constipation."
"A doctor at the spina bifida ward of the Radboud Hospital in Nijmegen, Holland, first introduced us to the method of transanal irrigation. The Peristeen Anal Irrigation system was the better solution because the inflated balloon seals the rectum and doesn’t bother Lieke too much".

Stretches her patience

It feels a bit unpleasant, to have the catheter inserted and the balloon inflated, but the real challenge is to have to sit on the toilet for 20 minutes. "I knew we would have to offer her things to do while waiting for her bowels to empty," says Ina and continues, "We want her to feel good while waiting, so I put a small table in front of the toilet, where she will be busy playing with her Barbie dolls or listen to music, sometimes with her sister."

After five months, Lieke and her parents have got into a routine of irrigating every second day. "This works well, although sometimes we need to regulate it a bit, but we aim at increasing the interval to three days," says Ina. "That should be possible once Lieke’s bowels adjust fully to the irrigation treatment. We have to get up earlier than our normal routine on irrigation days, but that becomes a habit too."