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

leone-VOGM

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.

treatment for vein of Galen malformation

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.”

surgery for VOGM

“Now we had hope”

Their search brought them to Boston Children’s Hospital, its YouTube channel — and this blog. “The stories we read here about other children with VOGM and their families made us feel so much better,” says Jane. “Now we had hope.”

She and Humphrey reached out to Boston Children’s International Health Services and were connected to the Cerebrovascular Surgery and Interventions Center, where clinicians determined that Leonce was a candidate for surgery to correct the malformation. Although the family was now faced with the prospect of seeking critical medical care not only at a new hospital but also in a new country, they were surprised by the smoothness of the process. “Boston Children’s scheduled everything for us,” Jane remembers. “They made everything so comfortable and easy.”

VOGM treatment at Boston Childrens

Hitting all his milestones

That sense of comfort extended to the day of Leonce’s surgery, during which Dr. Darren Orbach and his colleagues used a minimally invasive technique called embolization to close off blood flow in the abnormal blood vessels of VOGM. The procedure, which was a success, was made less nerve-wracking for Leonce’s parents, thanks to constant updates and reassurance from the medical staff.

Leonce himself seems to be taking everything in stride. A shy, quiet boy who loves to watch videos and play outdoors, he comes out of his shell when he’s around his big brother, Liam, age six. He’s also become quite a chatterbox: “He knew a lot of words before his surgery, but he didn’t really use them,” explains Jane. “Now he’s very talkative and hitting all his milestones.”

After two months in Boston, the family has returned to Kenya — but not before celebratory visits to the New England Aquarium and Legoland Discovery Center. The journey home was equally long — but 22 hours is nothing compared to the progress Leonce has made. “To go from being told our son might not walk to finding a cure… It makes us very happy,” says Jane. “We are so grateful to Leonce’s entire care team.”

Learn more about the Cerebrovascular Surgery and Interventions Center.