Through the collaboration between AVSI and the International Federation for Spina Bifida and Hydrocephalus (IFSBH), this article presents an encounter with Pierre Mertens, IFSBH President.

"Your daughter will die". These were the words Peter Mertens had to face few moments after the birth of his daughter Lies. And it was with these words Mertens began sharing his experience in front of more than 80 people, gathered together in Kampala on May 24th, accepting an invitation from AVSI and The Permanent Centre for Education. As the President of the International Federation for Spina Bifida and Hydrocephalus (IFSBH), Mertens was in Kampala on the occasion of the 18th International Conference of IFSBH, taking place in Munyonyo.

"The first feeling I had when I realized that my daughter was born with a severe birth defect, apparently incompatible with life, was loneliness", Mertens tells during his speech. "The doctor talked with me as if he was communicating to me a death sentence. Then he ran away. My wife was still in the theatre: I was alone with my pain". Even later on, when Mertens learnt more about his daughter's condition, that she was affected by spina bifida, the doctor told him that to fight against that disease would mean fighting alone.

Spina bifida is one of a group of birth defects known as Neural Tube Defects and it is estimated that, all over the world, it affects 1 to 2 of every 1,000 births. In addition to a gap in the skin covering the spine, the vertebrae and the nervous system are damaged, leading to some degree of paralysis. More than 85% of children with spina bifida also develop hydrocephalus ('water on the brain').

"The common tendency, in front of a disabled child, is to run away", Mertens continued. "But looking at my wife who could never believe that Lies, so beautiful, was going to die, I decided to stay. And my life changed. Lies lived 11 years despite the death sentence pronounced at her birth. I realized that comfort was not to be found in running away. Paradoxically, Lies, who was not able to go anywhere, was comforting us".

IFSBH is a worldwide network of organisations of people with Spina Bifida and Hydrocephalus and their families. Associations of parents whose children are suffering such diseases were the starting point for the Federation. "Be as close as possible to the family of the child is the only way to face disability", Mertens says.

"Our daughter Aber is suffering for hydrocephalus", Ojok, an engineer working with AVSI in Gulu tells the audience. "While at the beginning I was desperate, then the love my wife had for her, the love of our friends for us and of other parents facing the same problem, all gave me hope. Love saved us". The percentage of children born with spina bifida and hydrocephalus in Uganda is 0.8 every 1000. Developing countries are at higher risk, as one of the major causes for hydrocephalus is poor treatment of postnatal meningitis, which is common in Africa. Malnutrition of the mother and poor antenatal education can contribute to the development of spina bifida in children.

Last year in the November 5th issue of Sunday Times, the Royal College of Obstetricians and Gynaecology proposed to kill all the disabled children through active termination of life. Along the same line, the Dutch Groningen Protocol extends selection and termination of life of the unborn child on the grounds of disability to newborn children with spina bifida.

"Active termination of life should not be permitted on the basis of expected quality of life", is written on the IFSBH pamphlet. "One's life cannot be predicted, as it depends on many factors which are equal for all, irrespective of physical and intellectual condition". And again: "Perfection should not be a goal: diversity enriches society. Everybody has talents, skills, weaknesses and has the right to live. IF is cooperating to defend the rights of people with impairments world-wide".

"The remedy is not to end such lives prematurely-however expedient, convenient or cosmetically pleasing that might be", Jane Campbell, disabled herself, commented in The Guardian on November 24th about the debate on active termination of life for unborn disabled. "The answer is to disseminate available best practices and to provide the necessary resources".

A life worth living In the course of the International Conference held in Kampala, different sessions took place in different locations. "The Adult with Spina bifida group consisted of 12 members between 18 and early 40s, from various countries in the world, including Kenya, Uganda, Norway, the Netherlands, England, the US, and Portugal", Femke, AVSI Project Officer, tells her participation to a session, hosted by AVSI, where adults with spina bifida had the occasion to meet and share experiences. "Empathy was expressed, while humor brought the group closer and lightens up when discussing painful experiences. Cognitive difficulties were mentioned as a challenge, especially for the Ugandan members, who raised neglect and lack of information on Spina Bifida and Hydrocephalus in schools. Olivia expressed her disappointment about the doctor assessing her disability at university and never asking any question of cognitive difficulties. While Olivia would have done better in exams is she had had 30 minutes extra, she was never given this time. Geoffrey's story caused silence when he explained how he was caned by a teacher in school because he was "slow", which caused his shunt to get out of place. He then needed another surgery, yet his father had not money to pay for this. At the end of the session, I was very happy to have met these 12 people with Spina Bifida/Hydrocephalus who clearly show their lives, even within difficulties, are worth living". his time. Geoffrey's story caused silence when he explained how he was caned by a teacher in school because he was "slow", which caused his shunt to get out of place. He then needed another surgery, yet his father had not money to pay for this. At the end of the session, I was very happy to have met these 12 people with Spina Bifida/Hydrocephalus who clearly show their lives, even within difficulties, are worth living".

"Today we live in a world of alienated people"; said Mertens in a recent interview in Italy. "People believe they can live without pain, without disease, without disability. It is a lie. It is a distortion of the truth that brings only to one consequence: selection". Mertens instead shows the opposite. "Today with the discovery of methods of prevention of spina bifida our Lies could be still alive and independent. But Lies was Lies, also because of her disability. It is the way she was that made us love her. Why should we prevent who we love? This is the question".

In Pabbo IDP camp in Uganda, once per month Luisa Carugati, AVSI Physiotherapist, goes to treat children with impairments. They are many, all taken by their parents. Betty carries her son, a child with mental problems. His head keeps falling, but she is there, ready to put the head in the correct position, drying the saliva he cannot control, putting in order the sweater he wears. "Sometimes I feel like I should leave him there alone in one corner", Betty admits. "But then I think of these people coming from far here to help us. And I try to take care of him as they do with us".

"Prevention is better than cure and we take care of those whom we love. By taking care we see the value of life, but also the problems", says Mertens. "It is because we love that we prevent. Tomorrow starts today!".