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IF African workshop: welcome word Pierre Mertens


Dr.Verpoorten and Mr. Mertens

Dear friends

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.  

Pierre Mertens
President IF


More articles

7/02/2008 IF international ListServ
3/09/2008 Medicina e Persona Rimini Meeting 2008
2/06/2008 Endoscope installation at Hue Hospital, Vietnam
2/03/2008 Dutch Health Council advices on optimal use of Folic Acid
12/02/2008 IF visit to the Ugandan Parliament
11/02/2008 Introducing Olivia Nakato
12/02/2008 The gift of Deep Experience
11/02/2008 Introducing Rebecca Nakitto
11/02/2008 IPATH training in M'bale, Uganda
17/01/2008 AVSI and IF cooperate in Uganda
12/11/2007 IF-FFI meeting on mandatory fortification
25/10/2007 Luis Quaresma (Portugal) reports from Angola
25/06/2007 Endoscopic Third Ventriculostomy in progress
21/06/2007 Africa and "our" children
31/05/2007 Stories from Africa
11/05/2007 Clean up awareness campaign organized by SHAK - Nairobi
9/05/2007 5th International NTD Conference
6/04/2007 IF training visit in Vietnam
6/04/2007 Training in the Go Vap orphanage
2/04/2007 WHO seeks disability experts through IF
20/02/2007 PhD study on the effect of Spina Bifida on parents
18/01/2007 Home visits in Moshi area
9/01/2007 Trolls and spina bifida
4/01/2007 The Independent Living Center and Munishwor Society of Katmandu, Nepal, established a special contest
22/12/2006 not feeling alone…
13/12/2006 UN adopts Disability Convention
26/10/2006 Proposal for mandatory fortification of bread approved
25/10/2006 Conference Medicina e Persona, Italy
19/10/2006 article Clementina Isimbaldi for the Italian newspaper Libero
16/10/2006 Dear Friends of CCBRT
10/10/2006 without creating an NGO island…
10/10/2006 Short report from Poland
10/10/2006 Preventing Spina Bifida through Folic Acid Flour Fortification
4/09/2006 Dutch physicians succeeded in bringing back feeling in penis
23/08/2006 Elections are Congo's hope
7/07/2006 Resolution on active termination of life of newborn children with impairements and the right to live
12/04/2006 UK wants to improve folate status young women
4/04/2006 Update on IF's Campaign for Mandatory Food Fortification
31/03/2006 CIC treatment in Vietnam
30/03/2006 Update on the IF Conference in Helsinki
28/02/2006 1st national update on Spina Bifida and Hydrocephalus
19/01/2006 New study comparing two hydrocephalus treatments in Africa
18/01/2006 IF President to attend First National Conference in India
18/01/2006 IF lobbies Irish MEP for mandatory flour fortification
19/12/2005 IF and its Dutch member BOSK lobby against the “Groningen protocol”
19/12/2005 Oldest person with spina bifida
15/11/2005 IF's African workshop
10/11/2005 Ireland's IASBAH and IF towards European Food Fortification
10/11/2005 Meeting with Dutch physicians de Jong and Kompanje
24/10/2005 BBC Radio 4 programme on spina bifida in Guatemala
18/10/2005 NEW Publication from the Spina Bifida Association
12/10/2005 Tom Baroch reports on the situation in Guatemala
28/09/2005 Training in Thailand
28/09/2005 Second conference: "Building Bridges"
28/09/2005 A National Live Satellite Broadcast and Web Cast
28/09/2005 WHO resolution
28/09/2005 Meet Up!
28/09/2005 New staff in the Brussels IF-office
4/08/2005 July 27, 2005: Adult day
15/07/2005 IF adopts two resolutions to the United Nations
12/07/2005 32nd SBAA and 16th IF Conference, Minneapolis, 26-29 June 2005
13/06/2005 A long process to become adult for disabled teenager
27/05/2005 Ethics workshop
18/05/2005 Workshop on ethics with new accessed EU countries
17/05/2005 IF voices its opposition to European Parliament report on food fortification
14/03/2005 IF voices its opposition to European Parliament report on food fortification
13/02/2005 Bosk: No legal or policy-making room for active euthanasia
21/01/2005 Revolutionary advance in medicine
29/11/2004 LIESJE
26/11/2004 Supporting disabled adults as parents
24/11/2004 IF African workshop: welcome word Pierre Mertens
29/10/2004 Disabled people’s costs of living in UK: ‘More than you would think’
13/09/2004 crossing Borders - opening speech - Eli Skattebu
8/09/2004 Emily's letter to the President
8/09/2004 Crossing Borders - Opening Speech
6/09/2004 IF award 2004
6/09/2004 Closing Speech - Pierre Mertens - at Crossing Borders
6/06/2004 opening speech Pierre Mertens at the concert
29/05/2004 Friends Of IF
5/04/2004 ETV as the primary treatment of Hydrocephalus

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