If a tree falls in a forest and no one is around to hear it, does it make a sound?

January 19, 2017

There were three special pediatric cases in a three-week period at St. Gabriel’s Hospital this year.

Sam was a young adolescent, living in an orphanage. He was brought to the hospital with complaints of weakness in his left arm and leg – sudden onset. He also had a headache with nausea/vomiting. The medical director referred him to me. My evaluation revealed bilateral upper extremity tremors, difficulty with vision as well as the chief complaints. He was referred for a CT brain scan which showed a right thalamic astrocytoma. Sam passed away four days later.

Thomas was a toddler, brought to the hospital by his mother with complaints of weakness in the right arm and leg. Again, the medical director referred him to me. A previous admission reported weakness of the left leg. His developmental history was normal – previously running around the village playing with his friends. My evaluation confirmed the right sided weakness and neglect with difficulty sitting or standing alone. I recommended a CT brain scan, but the mother felt she needed to talk her husband and the village elders before having the test done. So, she went home. Alex, the home based palliative care coordinator, I and the students visited them a few days later to follow up (a two-hour trip one way on some rugged roads!). The nurse met with the father and the elders while we spent time with the mother, grandmother and child. The family agreed to have the CT scan done (and not to take the child to the traditional healer). Arrangements were made for the test, but the phone contact we were given to communicate with the family didn’t connect. So, Alex and I went back to the village to confirm the test plans in person. When we arrived, we learned that the little boy has passed away the afternoon before. Although the diagnosis was not confirmed, the suspicion was that he might have also had a brain tumor.

The next day, the medical director referred another boy, Harry – a second grader –  with complaints of left side weakness, head tilt, and eye squint. The problems were noticed two months ago. My evaluation also revealed significant ataxia. The family agreed to the recommended CT scan which showed a pontine glioma (suspected to be diffuse). The boy, his older brother, Alex and I traveled to Blantyre (five hours away) to consult with the only neurologist in Malawi. He reviewed the CT scan and confirmed the diagnosis. The treatment options were not optimal for a cure, so a palliative approach was recommended. The family was given resources for palliative care and returned to their village with the child.

When I asked the neurosurgeon about these three cases….why three cases in three weeks? He said this clustering has been reported in the literature. However, it has been thought that it is not actually an increase in the incidence, but rather an increase in the recognition of clinical presentation of brain tumors. So, children have brain tumors (the tree falls), but if the child is not brought to the hospital and the clinicians at the hospital don’t confirm the diagnosis, , the condition is not recognized (the tree falling doesn’t make a sound).

I will be working with the medical director at St. Gabriel’s to establish the best protocol possible, given the limited resources, for early identification of children with suspected brain tumors. We are working on a clear clinical pathway for early referral for CT scan and neurosurgery consultation.

I’m saddened by the conditions that take life from these young children. Some of the conditions would not be cured in the US, either. However, the children and their families in Malawi have a right to know and understand the diagnosis – even if the treatment is not available or not feasible. I will advocate for each of them and hope for new advances in treatment options for these conditions.

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Alex getting the phone contact information from the family after speaking with the father and village elders

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