|Dr.Verpoorten and Mr. Mertens|
My name is Pierre Mertens; I am the father of Lies, a wonderful and intelligent daughter who fully enjoyed her life. She loved music, art, had many friends, went to an ordinary school and youth movement and fell in love every second day. She had Spina bifida and died when she was eleven, after shunt revision.
I am not a professor, not a doctor, not a nurse or physiotherapist. I am a father and am an artist. This allows me to volunteer as the president of the International Federation for Spina Bifida and Hydrocephalus, called IF.
IF is aiming to become the word centre of knowledge for these two disabilities.
The IF Knowledge Centre, not an office tower in New York but a network of all people involved in the world of Spina Bifida and Hydrocephalus.
Last year in Moshi, Tanzania, we shared our knowledge on continence management.
Persons with spina bifida, their parents, nurses, surgeons, paediatricians, urologists and pharmacists worked together and achieved results where we in Europe only can dream of: becoming clean, dry, infection free and this with local means and without useless or avoidable surgery and expensive investigations .
This can only be achieved with the input of all involved.
A melting pot where, like in a good French Bouillabaisse, the mixture of all elements became more than the sum of all individual components.
Next year we would like to “move” into prevention. Not only prevention of Hydrocephalus, or Spina bifida, but also prevention of side effects, infections, malaria, etc…
This year we have chosen Hydrocephalus, surgery and what to do after surgery.
The mayor part of the 10 years IF expertise, in the fight for children with hydrocephalus in developing countries, is sitting in this room.
Welcome, and thank you for being here. You are the IF knowledge! Together with our friends from all over the world we are the IF Knowledge Centre!!
Knowledge on Hydrocephalus from the North to South, from East to West, from all over the world is scattered, splintered and often hidden in little corners, huts, clean laboratories, operating theatres, scientific publications, or high in the mountains of Afghanistan.
This makes the IF aims to bring this knowledge together as the major mission of the organisation.
Making existing knowledge available and create new advances. Creating like an artist, because the art of medicine goes beyond knowledge. The knowledge about Hydrocephalus and Spina bifida goes beyond the science of medicine.
Many boys desire to become inventors of new things and dream to make history. There is nothing wrong with that, but desire and dreams are not enough to become an inventor.
A real inventor is well informed and will build on the knowledge of others; otherwise he is reinventing the wheel. He has the drive or passion to know and to understand, to rethink what was found, to question the solutions and not to stop at the temporary limits of the known. This inventor has open eyes and ears and focuses on his work and is open to all new input and ideas.
The drive of many skilled surgeons was this boys dream.
Not only surgeons but all disciplines have their inventors.
Physiotherapists, nurses, paediatricians, persons with a disability themselves and their parents all are inventors when they are informed and when they can build on the knowledge of others.
Parents for example are inventing the most innovative things.
- A wheelchair with large pneumatic wheels to drive on the sandy beach
- A caster car for toddlers to be mobile on ground level.
- A sleigh or toboggan with skies to ski with friends in winter
- Even a shunt to bypass the extra fluid from the brain, Holter was the father of a boy with hydrocephalus too.
In Moshi we experienced that this multidisciplinary melting pot has potential for the real innovation for the inventor in us. This Bouillabaisse works only if we are able to leave our discipline and listen to each other. If we are speaking the same language. It is easier to explain something in difficult words that in what Carla Verpoorten calls “human being” language. This translation obliges us to go in depth to the basics, to the essence. This is where the inventors build on.
David Werner’s book “disabled village children” contains a treasure of this kind of information. We asked all speakers to start their input from this book, because this way we are sure that parents as well as paid professionals understand what we are talking about. And if I as a parent understand, I am sure the doctors will do the same.
The extreme situation in developing countries makes treatment and care sometimes difficult. Art taught me that limitations can create new and innovative art. Limitations force us down to the basics too. No over-care and rethinking what we are doing, questioning the solutions.
Two examples are: The shunt problems in Africa forced us to invest in ETV, a technique where without shunting a bypass is made for the excess of fluid in the brain; and the protocol for continence management developed by your projects and with the inspiring input of Dr Carla Verpoorten and Tina Oneko is better than most treatments in the North.
When, years ago, I met Dr. Ben Warf for the first time we shared the same guest room in the garden of Dr Bransford in Kenya. As boys we were sharing our dreams: we dreamed of creating an island of expertise, where projects can learn from each other. Mbale became such an island of expertise on Hydrocephalus. If Lies was still alive I would come to Uganda for the ETV surgery of my daughter.
My boys dream is develop IF into a laboratory of knowledge where these islands of experts work together world-wide.
I invite all of you to take part in this wonderful dream.
Parents, children and adults with spina bifida and hydrocephalus deserve the right treatment, at the right time, in the right place.
This is true justice. The right to live, to play, to dream and to invent.