Silent Struggles: Tackling Malnutrition and Dysphagia in Ugandan Children with Cerebral Palsy
- Isaac Ojok
- Apr 30
- 3 min read
In Uganda, children living with cerebral palsy (CP) are silently battling more than just a movement disorder. For many, the greatest threat isn’t the condition itself, but malnutrition caused by undiagnosed and untreated feeding difficulties a condition known as dysphagia.
The Cerebral Palsy Landscape in Uganda
Cerebral palsy affects approximately 2.5 out of every 1,000 live births in Uganda, according to studies by Kakooza et al. (2017) and John et al. (2019). This neurological disorder disrupts muscle coordination and motor function, often resulting in lifelong disability.
But behind these numbers are children like so many others: full of potential, but limited by a system that lacks the resources to address their complex needs especially when it comes to feeding and swallowing challenges.
Dysphagia: The Hidden and Deadly Risk
One of the most underrecognized and dangerous complications in children with CP is dysphagia the inability to swallow safely.
Common symptoms of dysphagia include:
Inadequate weight gain or sudden weight loss
Frequent coughing, choking, or gagging during meals
Repeated chest infections or pneumonia
Silent aspiration, where food enters the lungs without any visible signs
Without proper care, dysphagia leads to chronic malnutrition, weakened immunity, and a drastically shortened life expectancy.
Gaps in the Health System
In well-resourced countries, dysphagia is typically diagnosed and managed by trained speech-language therapists and pediatricians. In Uganda, especially in rural regions, these specialists are scarce and often completely unavailable.
Northern Uganda, for example, faces an acute shortage of pediatric rehabilitation services. At Gulu Regional Referral Hospital, the patient-to-doctor ratio is overwhelming. Specialized conditions like dysphagia are frequently missed or misdiagnosed, and children suffer without access to appropriate care.
FAST: A Lifeline for Vulnerable Children
Since its inception in 2019, Faith Audiology and Speech Therapy (FAST) has become a vital resource in addressing this crisis. Working in partnership with St. Philips Health Centre II, FAST provides feeding and swallowing rehabilitation services for children with cerebral palsy, congenital syndromes, and other neurodevelopmental disorders.
Over the past few years, more than 500 children with severe dysphagia have been assessed and supported through FAST’s program.
Yet, heartbreakingly, 201 children have died primarily due to recurrent pneumonia and severe malnutrition, complications directly linked to unaddressed dysphagia.
The Barriers Families Face
Even when care is available, many families face impossible odds. Key barriers include:
Poverty, limiting access to therapeutic feeding tools or diet modifications
Distance, with few transportation options to reach clinics
Low public awareness, causing delays in diagnosis or reliance on harmful traditional methods
These challenges often mean that even children who receive a diagnosis cannot continue with treatment, putting them at risk of preventable complications and death.
What Needs to Change
To save more lives and improve outcomes for children with CP and dysphagia, Uganda needs urgent investment in:
Training healthcare workers in early identification and management of dysphagia Integrating feeding assessments into routine pediatrics services Supporting families with nutrition therapy and follow-up care Raising public awareness on the signs of feeding and swallowing difficulties
A Call for Compassion and Action
Every child deserves the chance to eat, grow, and thrive regardless of ability or geography.
FAST has demonstrated what’s possible when specialized care meets urgent need. But they can’t do it alone. It’s time for policymakers, donors, and communities to step up, speak out, and support children with cerebral palsy.
Let’s break the silence around dysphagia and ensure no child suffers or dies simply because they cannot swallow.
Want to Help?
Join us in supporting children with cerebral palsy and feeding difficulties in Uganda.
📧 Email: info@fastug.org🌐 Website: www.fastug.org📞 Call: +256 778 769 115
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