If a child's kidneys permanently fail (chronic failure), the disease can no longer be cured and becomes a lifelong condition. The strain on the young patients, and their relatives, is enormous, says Christoph Aufricht, Head of the Department of Paediatric Nephrology and Gastroenterology at MedUni Vienna: "Being reliant on dialysis means that they can no longer have a normal childhood." Even if their kidneys have not yet failed completely, they have to face a lot of "grown-up" things such as: sticking to a diet, regularly taking a lot of medication, frequent hospital visits with blood tests and, of course, restrictions when it comes to school and leisure activities.
If their kidneys stop functioning at all, they have to start on dialysis treatment. This involves a dialysis machine taking over the excretory function of the kidneys and "purifying" the blood to remove harmful metabolites and surplus fluid. "That places an even greater strain on the affected child and his/her family," says Klaus Arbeiter, leading consultant in children's dialysis at Vienna General Hospital, "then it is virtually impossible for them to live a normal life anymore."
Restrictions for the whole family
For some patients, especially babies and infants, dialysis is preferably done using the peritoneal dialysis procedure, so that parents are able to perform dialysis themselves at home. Although this means that the young patient's family does not have to attend the hospital for dialysis – which has to be done several times a week – peritoneal dialysis takes up a lot of the parents' time and gives them a lot of responsibility.
For the most common form of dialysis, haemodialysis, which is mostly done in hospital, the children have to be connected up to a dialysis machine in hospital at least three times a week, and for between four and five hours each time, explains Arbeiter. "And then regular school attendance, normal leisure activities and holidays are just an illusion."
No matter which form of dialysis is used – "chronic liver failure means unimaginable restrictions for the entire family," explains Sophie Hemberger, clinical psychologist at the Department of Paediatric Nephrology at MedUni Vienna. Often siblings are also adversely affected and the financial burden upon the family frequently causes a problem.
This is why employees at the Department of Children's Dialysis set up the "Friends of Children's Dialysis" society more than ten years ago. The aim is to give the children and their relatives back a small part of their "lost" life. For example, in the past, holidays have been organized for patients, their siblings and parents. In February 2016 there was a skiing holiday to Semmering, when children had the opportunity to spend time with others in the same situation, so that they could experience their disorder as "normal". Parents also find it helpful to share with other parents, so that they can talk about their experiences of dealing with the many everyday problems and can support each other.
The society also provides financial support for family rehabilitation and pays for therapies not covered by health insurance funds (e.g. animal therapies). And, last but not least, the society offers financial aid to parents in emergencies. Link: www.freundederkinderdialyse.at
World Kidney Day on 10 March
This year, World Kidney Day is taking place on the second Thursday in March. It was initiated in 2006 by the International Society of Nephrology and the International Association of Kidney Foundations. The aim of this awareness campaign is to draw attention to the importance of having healthy kidneys and to reduce the number of kidney diseases and their impact.