What we do

We help children with spina bifida and hydrocephalus in the Global South.

Child-Help especially makes an effort for children with spina bifida and hydrocephalus in developing countries. Shortly after birth, this means surgery.

The back has to be closed surgically and if the baby develops hydrocephalus, it needs a shunt to drain the excess brain fluid. To guarantee the quality of care, training and quality control of all persons involved is needed: children, parents, self-help organisations, nurses, paediatricians, paramedics and surgeons.

Where necessary, Child-Help gives the missing medical materials and in all the projects, it supports the parent groups.

Child-Help expands with local partners a programme that assists these children and their parents for the rest of their lives.

If these children get treated in time, they can expand a full life in the family, neighbourhood and mainstream school.

Child-Help also helps prevent spina bifida by distributing folic acid tablets to mothers(-to-be) and by lobbying for food fortification.

Child-Help also helps prevent spina bifida by distributing folic acid tablets to mothers(-to-be) and by lobbying for food fortification.

In Europe

Child-Help is solidarity with and by people with spina bifida and works where possible closely together with the local Associations for Spina Bifida and Hydrocephalus.

Child-Help wants to point out the needs of the partners in the South to people here with a handicap in general and especially with spina bifida and hydrocephalus and their caregivers. That's why we work together with local associations for spina bifida and with other organisations like Handicap International and Light of the World. Child-Help also wants the European development cooperation to pay more attention to people with a handicap in the South.

Child-Help organised awareness campaigns in several European countries to improve the solidarity with people with a handicap in the South and to raise funds for her projects in the South.

Child-Help has an informative stall on events, information days gives lectures on-demand, and organises activities like theatre plays and exhibitions.

Houses of Hope

Child-Help is building Houses of Hope near reference hospitals where our children receive life-saving neurosurgery. Houses of Hope take care of parents and children with spina bifida and hydrocephalus before and after surgery.
They inform, support, and strengthen the parents and facilitate contact with the care providers in the hospital.

Assisting them often creates a lasting relationship that is important for parents and children. Contact with fellow sufferers is in itself helpful, they no longer feel alone.

After discharge from the hospital, the first days are crucial for the healing process.

Parents sometimes travel with their children for days to reach these hospitals and because of their stay at the House of Hope, they do not have to travel back and forth for the first medical check-up. Parents are strengthened to start the life of a child with a disability and to be able to cope better. These houses also want to be home so that parents always know where they can get help and shelter.

Their stay is useful to provide these young parents with information about their child's disabilities, their rights, and to inform them about where to find care. They also receive information about folic acid so that their chances of having another child with spina bifida in a subsequent pregnancy are reduced. Parents of children with spina bifida receive training in continent management techniques and learn how to handle the care and follow-up of their child at home. Because back home there are often no doctors who can assist them.

Crucial for the houses of hope is that they build a good relationship with the hospital, the treating doctors, and other care providers. They are unconditionally on the side of the parents and support the professionals in their work. They have a bridging function between the families and the social workers. For this, it is important that the hospital management is aware of this cooperation and also sees the benefits. Benefits such as shorter hospital admissions, better aftercare, shunts, etc ...

In that sense, Child-Help sees the Houses of Hope as support for the existing assistance and complementary to the health care of a country. The Houses of Hope do not take over the care of other care providers. They help to make care for our target group in government hospitals more accessible and to improve.

In the meantime, new Houses of Hope have started in Lusaka, Kinshasa, Hanoi, and Kijabe.

Continence Management

Using the right material, medicine, and a few simple techniques we train parents and children. After a few days, we already see some results and the children are dry and clean. This prevents pressure wounds and damage to the bladder and allows children to go to school and become full members of society.

We developed posters (and more posters) explaining step by step the procedure.

Together with the parents, we developed a brochure for teachers asking attention to the special needs of children with spina bifida and hydrocephalus.

Training and Networking

The care for our children is complex and therefore permanent quality control and adjustments are needed. That’s why Child-Help works together with other organisations. Here expertise is shared and developed. All partners within the platform use the same quality norms and protocols for the treatment of spina bifida and hydrocephalus and for the follow-up of children and youngsters with spina bifida and hydrocephalus.

Every year this platform of organisations organises a workshop that gathers the local partners around a current theme in care. Themes like neurosurgery, continence management, inclusive education, parent groups, and interdisciplinary care are dealt with. These workshops are inspiring for our partners, they give feedback and can adjust our policy where needed.

In all workshops, also if they are on medical disciplines, we involve the parent groups. They guarantee realistic assistance the best. Each workshop is a meeting point for parents and professionals from the South with colleagues from the North.

Medical Material

Each year Child-Help donates a few thousand shunts to the projects in developing countries, offering children with hydrocephalus a chance at a better life. Child-Help also donates other medical material, such as catheters and medication.

Self-Help Groups

From the start, Child-Help has in each project brought together parents, children, and adults with spina bifida and hydrocephalus in self-help groups. These are guided by our partners. Self-help groups have an important supportive function towards peers. Many of these groups have reached the stage to work independently. Some are already registered as local NGOs. In addition to peer support, they advocate for the right to life and treatment of their children. They engage themselves for an inclusive society, proper education, and employment. Various mothers, and adults with disability, are working as paid staff in the projects. Mothers turn out to be the best trainers. Child-Help assists these self-help groups with training and coaching. Child-Help itself has after all been developed by a self-help group for spina bifida and hydrocephalus.

For example, in Kenya the self-help group SHAK already consists of 16 branches and is registered nationally. With the support of Child-Help, they now run a guesthouse near the Kijabe hospital. In Tanzania, there are now 10 branches and the self-help group has made it possible that their children are being treated at the national hospital.

Emergency Relief

In disaster areas, children with disabilities are the first victims. Child-Help will start additional support activities for our children in disaster areas where our partners are active. For instance, in 2010, after Haiti was hit by an earthquake, the CURE International hospital in the Dominican Republic started a satellite in this neighbouring country. In solidarity with the victims of the disaster, Child-Help decided to support the CURE hospital in Haiti.

In 2015 Child-Help provided extra funds and medical material for Nepal. Dr Susil of Kathmandu was very grateful for this support, which enabled him to perform the necessary surgeries after the two severe earthquakes in Nepal.

In Mozambique, we contributed to the reconstruction of the hospital after cyclone Idai hit the country in 2019 and wreaked havoc.

During the corona crisis of 2020 Child-Help distributes mouth masks, sanitisers and food packages to our families and in our partner hospitals.