The sudden death of 10-year-old student Raniya Wright had many scrounging for answers.
For some, it may have been a surprise to learn the fifth-grader at Forest Hills Elementary School in Walterboro had died from a brain hemorrhage from a rare existing condition.
But experts note that there are people unknowingly living with tangled abnormal blood vessels in their brain like Raniya. And physicians want to make sure that people have more of an understanding of what it is before they make a dash to the doctor.
“I think education is key," said Dr. Jessica Hannah, a neurologist with Roper St. Francis Healthcare. “They can go to their doctor and evaluate it.”
An arteriovenous malformation, or AVM, is a cluster of unusual blood vessels that connect arteries and veins. If it is located in the brain, it can lead to a threat of a stroke and/or a brain bleed.
The American Association of Neurological surgeons estimates that less than 1 percent of the population is living with a brain AVM. The condition is rare.
It is also congenital, meaning a person is born with it. And patients can live their whole lives with an AVM without concern. That was not the case with Raniya. Her AVM caused a brain bleed, leading to pressure on her brain.
“It's the bleeding of the AVM that causes the problem," said Dr. Jeffrey Rubin, a vascular surgeon at East Cooper Medical Center.
AVMs can vary in size and impact. They can also occur anywhere in the body. The brain happens to be one of the worst locations because of its environment.
To put it simply, arteries carry blood with oxygen from the heart to the brain. Veins carry that blood from the brain to the lungs and heart to collect more oxygen.
According to the American Association of Neurological Surgeons, capillaries are the vessels that connect the two systems. They slow down the blood flow between the arteries and the veins. They also help with absorbing the oxygen from the blood.
With an AVM, the capillaries are not there and the blood vessels have thinner walls. This interrupts the flow in that connection. So inflammation of the AVM can fuel stroke-like symptoms since it will impact oxygen getting to the brain. Numbness and seizures are things to look out for as well. The inflammation can also cause headaches.
If the AVM leaks or ruptures, most patients will feel that immediately. Severe and abnormal headaches are usually an indicator of a brain bleed, according to the Mayo Clinic. Dizziness, vision and speech troubles, and numbness are symptoms as well.
If a patient is feeling symptoms, it's usually a bad sign.
“Those are never normal symptoms to have in a 10-year-old," said Dr. Douglas Stofko, the director of stroke and cerebrovascular neurosurgery with the Trident Health system. “All the symptoms should be taken seriously.”
Raniya's sudden passing got a lot of national attention after her family speculated her death was caused by a fight with a longtime bully.
Leading up to her death, her medical history reveals Raniya had numerous doctors' visits for "moderate" headaches and dizziness. She had over 10 visits between October 2015 and this year. At no point in her medical history was she diagnosed with an AVM.
The American Association of Neurological surgeons explain that four out of every 100 people with an AVM will experience a brain bleed like Raniya did. In fact, 50 percent of people with an AVM are diagnosed because of a brain bleed. Hannah compared to it to what is seen with an aneurysm or a swelling of a blood vessel.
Some people don't notice it until it ruptures or leaks.
“A lot of people are walking around with an aneurysm," she said.
The risk of that AVM bleeding also separates the severity of brain AVM's versus other parts of the body. Rubin explains that if a person has an AVM that bleeds in their leg, it's not as serious. He said there are more ways it can be easily corrected.
The brain is encased in a cement-like structure, he said. So a brain bleed doesn't give the blood a lot of avenues to escape and the brain begins have increasing pressure on it.
"There’s no give in the brain," Rubin said.
That's why when patients come in with a brain AVM, Hannah said, doctors examine what's called a bleed risk. The size and location of the AVM determines the risk.
She said if the AVM is high risk, then they may try to surgically remove it. If it's caught before it ruptures, zapping it with radiation is an option, she said. With this procedure, doctors can reduce the size of the AVM over time. She explained that there is also the option to cut off blood supply to the AVM.
Experts are currently unaware of any causes of the condition. Though people are born with it, it's not hereditary.
Hannah explained that patients need to be mindful of their own bodies. She said only they can determine if something like a headache feels abnormal.
In her experience, patients typically don't hesitate to visit the doctor over things like seizures. But sometimes with headaches, it can be overlooked or misdiagnosed.
An example she gave is if the headache is more severe. Another would be if the headache is continuous even with at-home remedies.
But she said this doesn't necessarily mean that a person would have an AVM. It simply means that they should consult a physician about the headaches.
As far as trauma causing an AVM rupture, many physicians aren't sure it can play a role. For people who have an AVM and don't need to have it removed, Rubin said doctors don't recommend major lifestyle changes.
Patients are recommended to shy away from smoking and anything that can cause high blood pressure. But as far as being able to play sports or other activities, Rubin explained there isn't much recommended.
He said he can't speak to Raniya's particular case. But in general if a person had large brain AVM and a severe concussion somewhere near that area, it could bleed, he said.
There is no question that trauma could have some impact. But he said he has seen cases where a patient stumbled on an AVM after getting a CT scan for another head injury. In those cases there usually isn't any rupturing.
“With the brain, the brain is protected by the bone," he said.
Since in general a brain AVM is rare, doctors don't want patients to worry. However, like with anything they should be mindful of their health and try to communicate with a physician. The goal would be to catch something like an AVM before it gets serious.
“A lot of time these patients are found down dead at home," Hannah said.