Thanks to the solidarity of the Norwegian and Swedish member associations, RHF and RBU, as well as IF, the international federation for spina bifida and hydrocephalus, Child – Help International has been able to develop structural and valuable partnerships with local partners. These partners have the capacity to treat and follow-up, both medical and socially, the children with Spina Bifida and Hydrocephalus. These partners also have capacity to help the parents start building parent support groups. An overview of the official partners:
The International Federation for Spina Bifida and Hydrocephalus (IF) is the worldwide umbrella organisation for Spina Bifida and Hydrocephalus, founded in 1979 by national organisations of people with these disabilities and their families.
The National Association for Disabled Children and Adolescents (RBU) actively works to change attitudes in society and create better conditions for children with disabilities and their families. RBU consists of children and young people with disabilities and their parents, siblings, and all others who wish to be members. RBU represent families that have children and young people with different types of mobility, including cerebral palsy (CP), ADHD, spina bifida, hydrocephalus, congenital osteoporosis (o), muscle diseases, Prader-Willi syndrome, short stature, brachial plexus palsy and multiple disabilities. RBU started in 1955 and currently has about 12 000 members of district and local associations throughout the country.
Ryggmargsbrokk- og Hydrocephalusforeningen is the Norwegian association for Spina Bifida and Hydrocephalus.
The Norwegian association has achieved wonderful results in their own country. From the beginning, the excellent work carried out in Norway has been shared with the international community, by playing an important role in IF.
On the establishment of the IF projects in developing countries the Ryggmargsbrokk- og Hydrocephalusforeningen showed their solidarity immediately, not only with fundraising campaigns, but also the lobbying of their government, Norad, and Atlas Alliance resulted in the financial input IF needed to succeed in this new challenge. The Norwegian association was closely involved in the entire process and motivated African parent groups to grow and fight together for their children. The whole association supported African solidarity and many of their members are involved in training and exchange projects in East Africa.
Local Partners, Service providers:
Set up in 1994, Comprehensive Community Based Rehabilitation in Tanzania (CCBRT) was established as a Community Based Rehabilitation programme. CCBRT serves the poorest of the poor in the community and tries to remove as many barriers as possible to allow people to seek treatment. They are changing the lives and communities of some of the poorest and most marginalised people in Tanzania.
The Arusha Lutheran Medical Centre (ALMC) is Arusha's newest and only full-service hospital. Located in the center of downtown Arusha, ALMC offers general and specialty care in many areas. Many children need specialized post-operative care that is not available in their rural villages. Some require more than one operation followed by post-operative physical therapy and rehabilitation.
As the size of the programs increased, the need to care for the children outside of the hospital setting, but in a facility with surgical and medical care, physical therapy and rehabilitation, and a school for long-term children became ever more apparent. Thus the idea of Plaster House was born. The Plaster House with a capacity of 100 children was completed in 2013.
BethanyKids at Kijabe Hospital is the children's ward of Kijabe hospital. It has a 60+ bed capacity and has become the referral hospital in Kenya for neurological patients. The hospital has outreach clinics as far as Dadaab (North of Kenya, border with Somalia). 90% of their patients have Spina Bifida and Hydrocephalus.
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. Katalemwa Cheshire Home has expertise in technical aids, producing wheelchairs, sitting aids etc.
OURS was founded in 1995 and has a 20 bed rehabilitation centre. It is running as a CBR Program (community based rehabilitation program) to identify, assess and rehabilitate children living with different types of disabilities. Children and their parents receive medical, social and therapeutic rehabilitation services, and many community activities are organized. OURS is a Centre of Excellence on lifelong follow up after children have received surgery at the CURE hospital in Mbale
AVSI has been active in Uganda since 1984, maintaining a constant presence in the northern region even during periods of high insecurity. This history and relationship with local communities has allowed AVSI to establish well-equipped and versatile field offices in Gulu, Pader and Kitgum with experienced staff with in-depth knowledge of the area, the population and the local leadership. Today, AVSI employs 172 staff based at the head offices and the two field offices. AVSI has an annual budget of circa $9 million for a wide range of programmes across the country. Donors include the USAID, European Union, ICC, UNICEF, Alliance, FAO and private donations from Belgium, Canada and Italy.
This project’s goal is to improve the quality of lives of children with Spina Bifida and/or with Hydrocephalus (SB/H) in Northern Uganda through early identification and referral of clients for surgery, provision of quality rehabilitation services, sensitize the community about the importance of prevention of SBH, lobbying and advocacy for inclusive development programs for all SB/H clients.
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 OURS in Mbarara, Katalemwa Cheshire Homes in Kampala, and other partners 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 a natural bypass to drain the fluid in the head through endoscopic surgery.
The Beit CURE hospital in Lusaka is one of the few hospitals in Zambia able to adequately address the surgical needs of the disabled children in the country. The hospital houses 45 patient beds in the children's ward. The neurosurgeon has been trained at the CURE Children's hospital in Mbale, Uganda and is helping many children with Hydrocephalus by using the ETV/CPC technique
The country of Malawi has few physicians. For some time, clinical officers have been "the backbone of the health-care system in Malawi" (to quote paediatric surgeon Professor Eric Borgstein). Children with Hydrocephalus used to only have access to treatment at Queen Elizabeth Central Hospital (QECH) in Blantyre. Through partnership, treatment is now available in several regional hospitals as well. QECH is the largest referral hospital of the country and has more than 1000 beds. Follow up is being organized in collaboration with the Beit CURE hospital in Blantyre.
CURE Malawi is a 66-bed teaching hospital that specializes in treating the orthopedic needs of children and adults. The facility was opened in 2002 and serves children with physical disabilities regardless of their ethnic background or religious affiliation.
The hospital also has special expertise in total hip and knee replacement surgery, making it one of the few places where this surgery is available in Sub-Saharan Africa. The hospital treats a wide range of orthopedic conditions including clubfoot, burn contractures, osteomyelitis, and other acquired or congenital conditions. In addition, CURE Malawi also provides physiotherapy and chiropractic services.
CURE Neuro is a specialty program of CURE International that exists to advance comprehensive care for children with hydrocephalus and spina bifida. CURE Neuro brings together a training program, care initiatives and research to build care capacity through partnerships across SubSaharan Africa and Southeast Asia. More than 35 surgeons representing over 20 countries have been trained through CURE Neuro, and as a result, more than 20,000 procedures have been performed globally by CURE-trained neurosurgeons.
Local Partners, Support groups:
- Tanzania: ASBAHT (Association for Spina Bifida and Hydrocephalus Tanzania)
ASBAHT was formed in 2001 with the aim to bring together parents and caretakers of children with SBH. This parent support group mainly works on advocacy and lobbying, and reaching out to society to raise awareness. It works closely with the Muhimbili Orthopaedic Institute (MOI). ASBAHT was registered as an NGO in 2002. It was designed to improve the quality of life of all persons with SBH and their families.
- Kenia: SHAKN (Spina Bifida and Hydrocephalus Association of Kenya National)
- Sudan: Spina Bifida Federal Association Khartoum (SBFA KHA, Sudan)
Central Uganda Spina Bifida and Hydrocephalus Network (CU-SBH)
Spina Bifida and Hydrocephalus Association Uganda (SHA-U)
- Malawi: Parents Association for Spina Bifida and Hydrocephalus Ltd (PASHL)
- Zambia Association for Hydrocephalus and Spina Bifida (ZAHSB)