A procedure that began in Africa is now helping children in North Carolina.
Rhys and Simon Cumbee are twins, but even at their young age—13 months old—they have distinct personalities.
“Rhys is very outgoing. He’s always on the move,” says his mom, Sarah Cumbee.
“We call him Squirm, because he’s always squirming around,” says dad Andrew Cumbee.
“Simon’s a little bit more inquisitive. He’ll sit and just kind of watch,” Sarah Cumbee says.
Rhys was 4 months old when his parents discovered another difference during a basic checkup.
“The doctor said that she could not feel the soft spot on his head,” Sarah Cumbee says. “She wanted us to take Rhys to get a head X-ray and head ultrasound to see if maybe the skull had closed in. She said it could also possibly be hydrocephalus. The panic kind of set in for me.”
Additional tests confirmed that Rhys had hydrocephalus, the buildup of fluid in the brain. The family went to see Carolyn Quinsey, MD, a pediatric and adult neurosurgeon who specializes in minimally invasive surgery.
“Hydrocephalus is fluid accumulation,” Dr. Quinsey says. “We all have brain fluid that we produce and reabsorb every day. In children, there are certain conditions in which they don’t reabsorb their own fluid, and that’s hydrocephalus.”
The reabsorption can be hindered either by a blockage that keeps the fluid from passing through the brain as it usually does or for unknown reasons, Dr. Quinsey says.
Symptoms of hydrocephalus include sleepiness, headaches, irritability and vomiting. Young children with hydrocephalus often have larger-than-normal heads. Because the skull isn’t completely formed in babies, the fluid passes through openings in the skull called fontanels and makes the head expand, Dr. Quinsey says.
Treatment for hydrocephalus requires surgery, and there are several options to choose from. The traditional method involves hardware called a shunt, a little tube implanted in the fluid space of the brain and connected to a valve to regulate the fluid flow. This tube is also tunneled under the skin and into the belly space, where the fluid can be reabsorbed. Dr. Quinsey says although this method has been done for years, it is a physical system and it can clog, causing additional doctor’s appointments or surgeries.
Another surgical treatment is to create a new passageway for fluid to flow, called an endoscopic third ventriculostomy, or ETV. A scope is used to create the new passageway so that fluid can be reabsorbed in a different way. Dr. Quinsey says this method is also commonly performed and works about half of the time in children.
A third method of surgery was developed in sub-Saharan Africa, where there are many more cases of hydrocephalus than in the U.S. because of a higher rate of infections. A neurosurgeon from the U.S., Benjamin Warf, MD, developed the choroid plexus cauterization (CPC) method while working in Uganda. This surgery heats and burns the tissue inside the fluid spaces, resulting in less fluid production.
“When you combine CPC with ETV, it’s about 70 percent successful treating hydrocephalus,” says Dr. Quinsey, who learned the technique from someone who was trained by Dr. Warf.
“When I heard that, I was like, ‘Oh, my gosh, that’s amazing. Tell me more,’” Andrew Cumbee says. “And Dr. Quinsey is only one of a handful of doctors around the world that can do the procedure, and she’s right here in our backyard. That’s pretty impressive.”
Dr. Quinsey performed the CPC and ETV surgery on Rhys in November; the surgery took less than an hour.
“That 45 minutes of surgery was the roughest of our lives,” Andrew Cumbee says. “To know that our kid was having brain surgery, I mean, I’ve never had brain surgery. Our kid is already a champ.”
Surgery went well. Rhys’ parents say he’s hitting all his growth and development milestones and the overall experience has been positive. Dr. Quinsey is pleased with his progress, too.
“His head has been growing appropriately, and the shape is much more normal-looking. He’s a handsome kid. And he’s a really great success,” she says.
If you are concerned about your child’s development, talk to your doctor. Need a doctor? Find one near you.