One of the biggest challenges facing disabled children in Uganda is feeding.
It’s a sad fact that many of Uganda’s disabled children will die not only from poor nourishment but being unable to feed, or their care givers being unable to feed them appropriately.
It is common for disabled children, for instance those with cerebral palsy or profound and multiple learning difficulties (PMLD) the world over the have feeding problems. Difficulties sucking, swallowing, gag reflex, oesophageal reflux, bite reflex, frequent vomiting and digestive issues are frequent and can cause a magnitude of issues for both child and care giver not least of which include severe anxiety surrounding eating, malnourishment and risk or injury or even death from choking.
|SSF volunteer, Richard, helps to give Fiona a drink at Home of Hope. Keeping children with disabilities hydrated is an ongoing battle|
In Uganda these problems are only exacerbated by lack of resources, support and information for the care givers. In the UK you would be offered support from a multidisciplinary team of doctors, nurses, dietitians, occupational therapists, physiotherapists and speech and language therapists. They would teach you about how to position your child, how to improve their muscles and capacity to chew, suck or swallow, what foods and nutrients to give them. They would provide adapted utensils, furniture and other equipment and may even introduce tube feeding in some cases.
|(Former) Home of Hope OT, Eddie, kneels behind David while feeding him to help support the correct posture for swallowing.|
Picture, if you will, living in a remote village where no one has ever seen a disabled child before. Access to medical officers is limited and their experience with children like your own sparse to nonexistent. With stigma and ignorance facing you at every turn, how do you go about supporting your child’s feeding problems?
|Luckily for Isaac, he lives close to a Soft Power Education SEN outreach clinic where he attends with his mum to improve his posture, muscle tone and his mum’s knowledge on feeding.|
For most babies and children who cannot suckle they are given cow’s milk (if available) or, more often, thin posho porridge (maize flour cooked with water). Whilst this may ensure the child does not wither away it becomes clear that, without even considering the immune benefits of a breast milk diet, once the child reaches a certain ages, maize flour and water simply does not contain enough nutrients to support a child’s development. Disabled children are frequently malnourished and dehydrated. Parents are not necessarily neglectful and will struggle at great length to feed the but physically cannot manage it.
|Rachel, who has cerebral palsy and feeding problems, with her mum. Maama Rachel feeds her posho porridge and biscuits soaked in cows milk if she can get hold of it.|
Choking is a continual risk and without first aid training care givers often do not know how to manage this. In a recent visit to the Mukisa Foundation in Kampala I noted that by far their biggest activity was a feeding programme whereby mothers are invited daily to come together to feed their children and learn from professionals and their peers how to support their child’s feeding. The support the organisation are providing is not only vital but effective and it was a pleasure to see the Mum’s chatting away and casually but successfully providing their children with the nutrition they need. However, I was also deeply saddened by the wall of photos of children supported by the foundation who have died, many of whom, I was informed, were victims of chocking. This more than anything highlighted the importance of the work they are doing.