Lessons from Uganda: Improving Care for Children with Neurodevelopmental Disabilities Around the World

uvmmedicine blogger Tamar Goldberg '15
uvmmedicine blogger Tamar Goldberg, M.D. ’15

I climb into a “matatu” shared taxi van on my way home after a long day at Mulago Hospital. The paved roads are coated with orange-red sand and filled with other matatus with their religious slogans pasted across their front or rear windows. Boda boda motor cycles and pedestrians crowd the streets. People yell “muzungo, muzungo” (the Luganda word for white person) at me as we drive by, and the children walking home in their school uniforms wave and laugh. The roads are lined with yellow MTN umbrella stands where you can buy minutes for your phone, furniture stands selling huge arm chairs, and carts filled with jackfruit, plantains, and mangoes. There are multipurpose road-side stores, and those selling colorful western looking clothes. I spent six weeks at Mulago Hospital rotating through pediatric clinical electives as an observer, a student, a teacher, and a cultural ambassador. My clinical experiences were incredibly valuable but often overwhelming, so it was nice to head home at the end of the day to a supportive host family.

While the doctors and residents at Mulago are well-educated and excellent clinicians, the lack of funding, resources and staff at the hospital make it impossible in many cases to provide the standard of care. There are days when no blood pressure cuffs can be found, no pulse oximeters, no thermometers. Certain medications aren’t available. The CT scanner is broken. On the pulmonary ward of the hospital there are only four wall oxygen ports so up to five children are attached to each oxygen pump with their beds pushed up next to each other. There is no privacy. A family member is always at the bedside to clean, feed, and care for the child.

I quickly learned to modify my patient history to include key aspects relevant to raising a child in East Africa: Do you cook over an open fire inside your home? Is your home well aerated? Do you drink boiled water? Do you sleep under a mosquito net? Have you ever had serotesting? Does anyone in the family have chronic cough? I tried to spend as much time as I could with the residents and medical students discussing differential diagnoses of patients and mastering physical exam skills. Over the weeks I experienced tremendous growth in terms of assessing the clinical status and stability of patients based on exam, triaging, correlating clinical signs and symptoms with underlying pathology, and seeing conditions that are rare in the U.S.

After medical school I will be pursuing residency training in pediatric neurodevelopmental disabilities, and given my interests, I spent a lot of time reflecting on the medical and social services available for children with neurodevelopmental disabilities in Uganda. Genetic testing is rare, and it seems like most children with syndromic features are diagnosed with Down syndrome. Mothers carry their eight to 12 year-old children with cerebral palsy on their backs to the weekly pediatric neurology clinic, which is attended by one of the three pediatric neurologists in all of Uganda. There are no wheelchairs, and even if there were, nothing is wheel-chair accessible. I asked what happens when the child gets too big for the parent to carry, and the doctor said they usually don’t live that long – dying of aspiration pneumonia or other medical complications. In clinic we evaluated children with weakness, adverse neurological complications from malaria, strokes related to sickle cell disease, visual impairments, and seizure disorders, which are more prevalent in the developing world because of known risk factors such as infection, malnutrition, and limited resources for obstetric and neonatal care.

Billboards lining the sides of the roads read: “Children with disabilities can excel in education regardless of their physical, sensory, mental and intellectual disability;” “Do not neglect children with disabilities,” and “He has no hands but can write.” Despite efforts and various laws to protect them, community misconceptions and stigma remain prevalent, and children with disabilities are subject to abuse, exploitation, and marginalization. Families often hide these children, and inadequate nutrition prevents them from developing physically and cognitively. Children with epilepsy are often sent home from school until their seizures stop, for fear of spreading them to other children.

During pediatric neurology clinic I overheard one of the residents counseling a mother on how to shop for food for her twins for a week – telling her exactly what to buy and how much it would cost to feed them a more nutritious diet. The antiepileptic drug regimen almost seems inconsequential when you are dealing with poverty, malnutrition and social deprivation. Improvement of care for children with neurodevelopmental disabilities around the world will need to go far beyond their medical management, but I remain inspired to work toward this ultimate goal.

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