Supporting children with cerebral palsy in Uganda

Even today, giving birth in Uganda remains a risky business. Many women deliver without access to basic obstetric services, meaning there is often little help when complications arise during birth of their child. If a baby gets stuck in the birth canal for too long they may suffer brain damage as a result of lack of oxygen; this is what is often called ‘birth asphyxia’. This may manifest later in life as difficulties with movement and coordination, and sometimes also with swallowing and drooling - this is what we know as cerebral palsy.

Whilst cerebral palsy is a well-documented condition in the developed world, the disease process is very poorly understood in Africa. The developing world is home to 80% of the 200 million children living with disabilities worldwide, so understanding the disorder in this setting is vital. The ABAaNA study is the largest study to date directed at understanding both the risks and the long-term outcomes of a birth asphyxia in Africa. The results of the study will be used to get newborn brain injury and cerebral palsy onto the health agenda, and direct medical and public health measures in the future.

Doing a study like this is no easy business. Two and a half years ago in Uganda, Dr Cally Tann, a doctor specialising in Newborn Health, led the recruitment of 200 babies with newborn brain injury and another 400 babies who did not to act as a comparison group. The children have been followed ever since. They were seen at 1 year, when more than a quarter of children affected by newborn brain injury showed signs of early cerebral palsy or other disabling neurological problems. Now we are seeing them again at two and a half. Working out the cognitive and neurological abilities of a 2.5 year old can be a tricky business. The study team have been trained by world experts and are working 5 days per week to see all of the toddlers in the study over the coming year. Patience is your friend when assessing children of this age. Excitement can turn to tears in a matter of seconds and the examiner must be on their toes to react to the whims of the child. It can also take a long time once you've accounted for tantrums, over-excitement, trouser-wettings, and power naps.

The ABAaNA study is funded by a number of sponsors including the Wellcome Trust and Cerebral Palsy Alliance, Australia but it hasn't always been easy to raise additional funds for the things that can make a real difference to the lives of the children and their families. In the UK the value of support that children with disabilities receive runs into the thousands, and rightly so, but in Uganda care and support can be hard to find. We are aiming to raise £10,000 so that we can offer our families some support, both in the way of important life changing equipment for children with CP and also to offer their families a community rehabilitation programme to help them to support and care for their children with special needs. For example, we have found a team that are able to build support chairs to personal specification. Although they are now over two years old, many of the children with CP are unable to sit unaided and a chair like this will make life much easier for them in the home, helping them with feeding, learning and play and improve the ways that they can participate in family life,. Each chair is tailor-made for the child and costs around £30. We are also raising money to fund a 10-session community rehabilitation programme for the mothers. This would provide a space for mothers to meet, learn about cerebral palsy, and share practical advice with each other about how best to look after their children acting to build a feeling of community between mothers who are living with similar challenges in life.

Since it seems like one is unable to run a fundraising scheme without doing some kind of physical exertion or death defying feat so Ellie and Jack are going to attempt the Kyaninga Lake Triathlon which is set in one of Uganda's crater lakes on the border with the DR Congo. It's not completely token as it's a tough race and set at altitude in the Rwenzori mountains. Also Jack can't really swim and Ellie struggles on the tarmac. Neither ride a bike. So there is a bit of training involved, but hopefully no loss of life or limb …plus I think it's good to have some kind of focus to kick start our campaign.

The children of the ABAaNA study are providing the world with vital information about cerebral palsy in Africa. There are many cultural misconceptions that mean that mothers often face discrimination, and there is little in the way of educational and practical support for these families. Through our work with them we have learnt about the huge social, financial and emotional impacts of living with cerebral palsy. Now we want to give something back…. to them, and other families affected by cerebral palsy in Uganda. Bringing up a child in Uganda is hard enough, but bringing up a child with a disability can be on another level. Please help us to make a real difference to their lives.