Hope for Leonce: Kenyan boy ’s incredible journey with vein of Galen malformation

Boston is a long flight from Kenya — 22 hours long, in fact. That’s enough time to sleep, eat, read, watch countless YouTube videos and do it all over again, an experience that could make adults antsy, let alone two little boys. Yet it was a journey that Jane Nduta and Humphrey Njogu were eager to make. Just a few months earlier, their younger son, Leonce, had been diagnosed with a rare but life-threatening condition called vein of Galen malformation, or VOGM. In this blood vessel abnormality, misshapen arteries in the brain connect directly with veins instead of with capillaries. This causes a rush of high-pressure blood into the veins and can increase a child’s risk of hypertension, congestive heart failure and brain damage.  A scary diagnosis After a high fever brought Leonce to his local pediatrician, doctors noticed his larger-than-average head circumference and ordered a slew of tests. Although all his other results were normal, an MRI scan identified VOGM, which can cause hydrocephalus (an enlarged head) in some kids. The diagnosis was devastating — and confusing. Leonce’s doctor was a top neurosurgeon in Kenya, but had only seen a few cases of VOGM in his long career. Worse, he believed the prognosis was grim. “He told us that Leonce might not be able to walk or speak, and that he could lose his sight,” says Humphrey. “He suggested we search online for more information about the condition. So we started Googling, right there in the hospital.” “N...
Source: Thrive, Children's Hospital Boston - Category: Pediatrics Authors: Tags: Diseases & Conditions Our Patients’ Stories Cerebrovascular Surgery and Interventions Center Dr. Darren Orbach International Health Services vein of Galen malformation (VOGM) Source Type: news