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International Federation for Spina Bifida and Hydrocephalus
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International Federation for Spina Bifida and Hydrocephalus - Homepage

Introduction

Philosophy of the IF projects

Hydrocephalus in developing countries

Spina Bifida in developing countries

Research in developing countries

Evaluation of the IF projects

IF publications

Special literature

Partners in development cooperation

 

Developing countries

Partners and Parent groups

- Official partners
- Parent groups within the IF projects
- Important to meet other children with the same disability
- Partners in Development Cooperation

Official partners

IF is the world-wide umbrella organisation for Spina Bifida and Hydrocephalus organisations. It is a global knowledge network which makes information available to people with these disabilities and their families.

Thanks to the solidarity of the Norwegian and Swedish member associations, IF has been able to develop structural and valuable partnerships with local partners in East Africa. 

These partners have the capacity to treat and follow-up, both medical and socially, the children with Spina Bifida and Hydrocephalus. The partners also have capacity to help the parents start building parents groups.

An overview of the official partners in the South:

           Dar es Salaam (Tanzania): CCBRT Disability Hospital
           Moshi (Tanzania): CCBRT CBR Kilimanjaro in cooperation with KCMC
           Kijabe (Kenya): Bethany Kids at Kijabe Hospital (BKKH) 
           Kampala (Uganda): Cheshire Homes Kampala
           Mbale (Uganda): Children’s Hospital Uganda 
           Lusaka (Zambia): CBR  Cheshire Homes
           Blantyre (Malawi):  Queen Elisabeth General Hospital
           Khartoum (Sudan): Cheshire Home Khartoum

In addition, IF maintains a network of contacts in and with other African nations in the areas of exchange of information and training. IF also collaborates with new partners in Latin America. With the experience we have gained in Africa IF can really support the efforts made in Latin America.  

To reach its goals, IF works closely with other NGOs like CBM, Cheshire Homes, CURE, Paz Holandesa and Lilianefonds.

This cooperation in the field as well as on a global level is essential for our target group and of benefit to all INGOs. Together we are stronger!

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Parent groups within the IF projects
members of the parent group in Moshi

The project places great emphasis on encouraging parents to come together and meet each other as well as empowerment of the family of the disabled child.

Research shows that informed and involved parents are an important factor in the decline of the complication rates if they are active partners in the rehabilitation process of their child.

IF supports parent groups through the official partners, as mentioned above. The parent groups in the project countries exist as part of the projects and existing structure. They are being instituted by an organization (= project) that is recognized by the government and IF facilitates these groups as part of the projects. 

At this stage, all projects have assisted in developing parent groups. They support the work of the parent groups in their existing structure.

We have now active groups in Tanzania, Uganda, Zambia, Sudan, Kenya, Malawi and support initiatives in other countries that do not have official IF projects, such as South Africa, Zimbabwe and Somalia.

The input of the Norwegian organisation for Spina Bifida and Hydrocephalus and the Swedish association RBU has been - and continues to be - crucial in creating and empowering new groups in Africa.

 

Important to meet other children with the same disability
parents and children sharing experiences

some testimonies from parents in the projects:

   But it wasn’t until I had been to the first parents’ group meeting that I fully understood the effects of the damage of my child, she says. Veilda was six months old at that time.

   When I heard about everything that could happen I didn’t expect her to be as nice as she is. I thought she would die. Three other children, who were operated on at the same time as her, died.

   The parents’ meetings mean everything to me and my husband. I learn a lot each time we meet, but it’s equally important for Veilda to see other children in a situation similar to hers.
   For one and a half year now, Annette catheterises her daughter. Before, she used to have urinary infections. Now they have ceased.

   My husband is a carpenter and I have a small enterprise selling things, she tells. A fourteen-year-old girl tends to Veilda when I work. But I hope for my daughter that she will have the opportunity soon to start in a school preparatory children’s activity and later on preferably go to an ordinary school. If it turns out to be impossible I wish that we as parents can get a special school of our own started.


   The individual meetings with all those parents are intensive, emotional. The many sick children that we encounter stay before our eyes, with their pressure wounds, big heads, infections of various kinds, but also the many well functioning children, who get along surprisingly well in simple, poverty-stricken environments; because they can keep themselves dry, because they have had help from the Norweigans who supplied them with shunts, because they have parents who love them and try to get organised and educated about their children’s disabilities in an everlasting movement forward. All this put together is an experience which will make you look on Africa in a different way than before. You will never see it from the outside again; instead you have it within you, always, and whenever pictures from Africa flash by on media screens.

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CCBRT Disability Hospital Dar es Salaam (Tanzania)

CCBRT (Comprehensive Community Based Rehabilitation Tanzania) is a private Non-Governmental Tanzanian Society (NGO), registered under the Tanzanian Societies Act, N° SO8261 on October 12, 1994.

The goal ofis to contribute towards poverty alleviation by responding to the lack of accessible and affordable services for disabled people in Tanzania, who are among the poorest of the poor. A survey highlighted an extreme shortage of preventative, curative and rehabilitation services for people living with disabilities, in addition to AIDS patients and orphaned children.

The disability hospital was build with a special ward for Spina Bifida and Hydrocephalus sponsored by the IF -Network. There was a need to have a better impact on the surgical conditions to improve the quality of care.

Official partners since 1998

CBR Kilimanjaro (CCBRT) (Tanzania)

Kilimanjaro Community Based Rehabilitation, located on the slopes of Mt Kilimanjaro in northern Tanzania, offers rehabilitation and preventive services for the disabled in their local communities. Kilimanjaro CBR began operating in 1996 and now covers mostly the Kilimanjaro region. 
CBR Kilimanjaro prepares and refers children who need surgery to CCBRT in Dar es Salaam or Kilimanjaro Christian Medical Centre (KCMC – www.kcmc.ac.tz) in Moshi.

KCMC is a referral hospital and covers the following districts: Moshi Rural, Moshi Urban, Mwanga and Hai and Arumeru and Karatu districts in Arusha.

The programme work trough CCBRT –Kilimanjaro, but help s also the families from the other regions.

At KCMC the IF-Network created with Dr M. Oneko at KCMC a neuro pediatric Clinic of Spina Bifida and Hydrocephalus.

Bethany Children’s Hospital Kijabe (Kenya)


Bethany Kids at Kijabe Hospital is the children’s ward of Kijabe hospital. It has a 46 bed capacity and has become the referral hospital in Kenya for neurological patients.

The hospital has 13 outreach clinics as far as Dadaab (North of Kenya, border with Somalia).

90% of their patients have Spina Bifida and Hydrocephalus.

Katalemwa Cheshire Homes of Kampala (Uganda)


Katalemwa Cheshire Home is a disability rehabilitation centre in Kampala. Spina Bifida and Hydrocephalus children are identified and prepared for necessary surgery. Katalemwa has a structural cooperation with the CURE project in Mbale for shunting, ETV and closures of the back.

After the surgery, the centre provides follow-up.

For the moment, about 250 children are being followed up. Katalemwa

Cheshire Home is the expert in technical aids, producing wheelchairs, sitting aids etc….

CURE Children's Hospital of Uganda (Uganda)


The CURE Children’s Hospital of Uganda has become the referral hospital for Spina Bifida and Hydrocephalus in Uganda.

It works closely together for follow-up of the children operated with the Katalemwa Cheshire Homes of Kampala, in Kampala, Uganda. Focus has been on treatment of and research on Hydrocephalus.

CURE Children’s Hospital of Uganda became the expert on alternative surgery of Hydrocephalus with ETV, making with an endoscope a natural bypass of the fluid in the head.

Queen Elisabeth General Hospital (Malawi)


The country of Malawi has few physicians. The medical college in Blantyre is only 10 years old, and post-graduate training programs have only just begun in surgery and orthopaedics. For some time, clinical officers have been “the backbone of the health-care system in Malawi” (to quote Professor Eric Borgstein). Needless to say, Malawi has no neurosurgeon. Children with Hydrocephalus have only had access to treatment at Queen Elizabeth Hospital in Blantyre, where shunts were being placed by Dr. Borgstein.

Malawi is a long, narrow country stretching from north to south.  Because of poor infrastructure and poverty, travel is very difficult for most.  This, of course, hampers and delays the arrival of children to Blantyre for treatment, as well as for follow up or the management of any shunt-related complications.  As Dr Warf has found in Uganda, Hydrocephalus is very common in Malawi, the majority of which seems to be caused by meningitis/ventriculitis in infancy.

Cheshire Homes CBR of Lusaka (Zambia)

The IF project at University Teaching Hospital (UTH) is a phase one project, currently only supported by the provision of Chhabra shunts.  The IF liaison person is Margriet Kern whose husband, Ekhart, directs a Cheshire Home in Lusaka.

UTH has 3 neurosurgeons (1 Zambian, 1 Uzbekistani, and 1 Chinese) and 2 paediatric surgeons (both Uzbekistani). This entire group is involved with placement of shunts. In addition, clinical officers in the department also place shunts. Likewise, surgery for the closure of back is shared between the two services (neurosurgery and paediatric surgery). There appears to be no coordination regarding referral or follow up of these patients.  Referral of patients seems to be mainly through the paediatric clinic. Follow up is difficult for many of the patients with shunts because of the large size of the country, with Lusaka being the only centre for managing Hydrocephalus.

Cheshire Homes Khartoum (Sudan)

Khartoum Cheshire Home is a rehabilitation centre for children with a physical disability. It was established in 1974 and is registered in Sudan as NGO.
More than 8000 children were taken care of up to now, most of them paralyzed. There are two main departments at Khartoum Cheshire Home: in-patients and out-patients. 50 children can be lodged at the Home when recommended by volunteer doctors.

The following services are provided to the patients: physiotherapy, surgery, speech therapy, hydrotherapy, orthopaedic workshops, clinics, schooling and community based rehabilitation. They also offer social activities.

The IF –Network project is mainly focused on continence management and parent groups but started recently also a shunting programme.

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