In some European countries, children born with certain disabilities are denied access to basic life-saving treatment. This may be because parents are not given information or support when their child is diagnosed, and the life-saving treatment they need is not provided, unless their parents can find a way to pay for it. They are advised by health professionals that a residential institution is the best option for their child, unaware of medical interventions that could enable the child to lead a meaningful life with their family.
Families feel they have no alternative but to send their children to live in large-scale residential institutions, on the understanding that they will receive better care than families can provide. Once institutionalised, they are likely to remain so for life.
One such group of children are those born with hydrocephalus, a condition which causes a build-up of fluid on the brain that, if left untreated, can cause brain damage and even death. For children with hydrocephalus, the consequences of life in a large-scale institution can be fatal: without adequate treatment and support, many children die.
Lumos has worked throughout Europe to raise awareness of the condition and to improve services. It is our aim that all countries in Europe will ensure State provision of the medical treatment vital to save the lives of, and give the chance of a future to, all children born with hydrocephalus.
The standard treatment for hydrocephalus is the surgical insertion of a shunting device. A shunt is a system of tubes, which controls pressure in the brain by diverting the accumulated cerebrospinal fluid around the obstructed pathways, returning it to the bloodstream.
The experiences of parents, children and doctors
"Believe in your child and be with your child.”
Dimitar, from Bulgaria, whose daughter has hydrocephalus
“Parents of children diagnosed with hydrocephalus should believe in their child and be there for their child regardless of what may come.
"We parents are the only ones who can help our child become a person, and it is up to us.
"It is very important not to listen to well-meaning friends, family and neighbours who tell you, “leave the child in an institution, you will have another one”. Focus only on your child, on helping your child get better and finding the treatment you need. Because in that moment you are desperate and when someone tells you – leave them in an institution, have another one – it can seem like a good solution, but it is not. The only chance for the child is if the parent is right there next to them…”
“It is possible to overcome this disease.”
My experience of hydrocephalus by Maria
"The operation was quite hard on me and my family. My parents had to ask for money from their friends, colleagues, everyone they knew in order to pay for the shunt. They even sold their car. Later at school some of the kids made fun of me but it did not stop me to continue with more faith and fight for what I want in life.
“I now have a Masters in Public Administration and I work at the municipality. I have a child and I consider my life to be a success.
"I want to say to the people that with the shunt you can live a normal life like everyone else. It is possible to overcome this disease."
“This is their chance for life.”
Neurosurgeon, Dr Alioski talks about hydrocephalus and working with Lumos in Bulgaria
“Two years ago when a parent with a child with hydrocephalus came to me, I had to tell them that they needed to find the money for the treatment. Now I don’t have to worry how to explain to the parents that, aside from the tragedy of the diagnosis, they need to buy a costly shunt.
“The difference to a child receiving this intervention is significant. In some cases it is a chance for life. This is the difference. The quality of life improves. Some of them develop normally and go to regular schools.
"But for many of them it is simply the chance to live."
For more information on Lumos' work within the European region, to ensure that all children born with hydrocephalus receive the life-saving treatment they need, read our report: