Want to understand dialysis? Ask an eight-year old
For kids with kidney failure, haemodialysis is a fact of life: the tubes, the machine, the tedium of waiting hours for their blood to be cleaned. Dialysers do the job that healthy kidneys should do. But don’t listen to me…
Let Danielle explain it.
When Danielle’s mother posted this video to YouTube, she was a very charming eight-year-old girl. A little small for her age because her failing kidneys were not regulating her levels of growth hormone normally, she is an otherwise typical bubbly little girl.
Like many patients, Danielle has become something of an expert in haemodialysis, dialysers and all the routine that accompanies her thrice weekly dialysis sessions. She weighs herself, takes her own temperature and has her blood pressure recorded. Speaking through her surgical mask, she tells us why using alcohol pads help to keep germs out of her catheter and tubes.
‘If the lines are not clean I could get a blood infection,’ Danielle explains. For her, being hooked up to these complex machines, which need to be replaced every seven to ten years, is a simple chore. The red tube takes blood from Danielle into the dialyser where it is cleaned, and the blue tube returns the filtered blood to her body.
After three hours of patiently reading books, doing homework, eating lunch and maybe taking a nap, Danielle is good to go – at least for another couple of days. The video was made to help Danielle’s friends and classmates understand her condition a little better. And it’s a great help to any family dealing with a fresh diagnosis of kidney failure and facing into dialysis for the first time.
There are other online resources too, like this guide to starting dialysis produced by the Children’s Hospital Philadelphia and this explainer for parents of children with kidney problems. And if you want to see the kids of Children’s Hospital of San Antonio’s dialysis unit tell their story – while having a lot of fun – check out this video.
According to KidsHealth.org, children who need dialysis today are benefiting from improving technology. Machines are getting smaller, dialysis is getting a little easier on patients and, in carefully selected individuals, haemodialysis can even be done at home.
For some kids, peritoneal dialysis is an option. Peritoneal dialysis is a little different from the haemodialysis as Danielle explains in the video. It involves using the lining of the abdominal cavity to filter the blood, facilitated by a surgically-inserted catheter in the child’s abdomen. Continuous ambulatory peritoneal dialysis (CAPD) does not require a machine whereas continuous cycling peritoneal dialysis (CCPD) uses a ‘cycler’ which fills and empties the abdomen several times a night while the child sleeps at home.
It’s a daily process and can require children and their parents to become familiar with machinery and disposable medical equipment while following exemplary hygiene standards. While it may be a little different to Danielle’s hospital-based haemodialysis, a lot of the principles are the same – including the need to adjust psychologically and socially to the reality of living with kidney failure.
So what happened next?
The video of Danielle is three years old. Want to know what happened to her? According to a note posted by her mother, Danielle was given the ‘gift of a kidney’ form her cousin. ‘She is doing very well now post-transplant….Thank you all for your supportive comments and love.’
No doubt Danielle was glad to bid farewell to her dialyser – or ‘Robo-kidney’ as she called it. Still, dialysis is essential to keeping kids like Danielle healthy enough to have a kidney transplant when an organ becomes available. Her Robo-kidney served her well and her excellent video diary has given thousands of people an insight into what life on dialysis means to a kid.
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Photo credit: Steven Depolo/Flickr