The first sign of trouble for five-year-old Sebastian Castro was the headache he woke up with the day he had a stroke. An active child with no known health issues, Sebastian’s head hurt so bad that he began vomiting and couldn’t even stand up. By the time paramedics from Jacksonville Fire and Rescue arrived on the scene, he had lost consciousness.
His parents were shocked to learn that Sebastian had suffered a dangerous brain injury. “It just happened out of nowhere,” said Carlos Castro, Sebastian’s father. “When we got to the hospital and the doctor came out and told us he’d had a stroke and needed emergency brain surgery, we couldn’t believe it.”
MRI scans taken of Sebastian’s brain once he made it to the Wolfson Children’s Hospital Emergency Center indicated to Ricardo Hanel, MD, a Baptist Health endovascular neurosurgeon, that the stroke most likely had been caused by a ruptured arteriovenous malformation (AVM) due to the size of the bleed on his brain. Sebastian immediately was taken to the hospital’s neurosurgical operating room where Dr. Hanel, together with pediatric neurosurgeon Philipp Aldana, MD, co-medical director of the Wolfson Children’s Hospital Neuroscience Institute, worked together to open his skull and remove the blood clot and AVM from the right lobe of Sebastian’s brain.
An AVM is an abnormal tangle of arteries and veins in the brain. Some people have AVMs that are never diagnosed because they don’t cause problems or symptoms. Others get warning signs such as seizures and headaches or experience a rupture. According to Dr. Hanel, half are first diagnosed after a rupture, while the other 50 percent are found to have one because of warning signs or by undergoing testing for an unrelated problem.
“Stroke is much less common in kids than it is in adults but it’s very important for people to know that it can happen,” said Dr. Hanel. “That’s true with strokes caused by a blockage like a blood clot, and those related to bleeding on the brain like an aneurysm or the bursting of an AVM as in Sebastian’s case. Brain AVMs account for about two percent of all hemorrhagic strokes annually, but they are the number-one cause of bleeding in the brain for children and young adults.”
During Sebastian’s brain surgery at Wolfson Children’s Hospital, an angiogram was performed to ensure that the AVM was completely gone, and afterwards he was kept in an induced coma for a week to aid in the healing process. A shunt also was placed in his brain to help drain excess fluid, and Sebastian spent three more weeks in the care of the Pediatric Intensive Care Unit team until he was ready to be transferred to Brooks Rehabilitation in Jacksonville. There, he received three months of inpatient therapy since the stroke had left him paralyzed on his entire left side.
“With the help of rehabilitation therapy, Sebastian was able to start Kindergarten at Duval County Charter School the fall after his stroke,” said Carlos. “He had a very pronounced limp, but slowly regained much of the strength he had lost, and has done well at school.”
Fortunately for children and young adults with AVM, the chance of a recurrence is only 10 percent. Unfortunately for Sebastian, a routine five-year-follow-up scan earlier this year revealed that his had come back. He underwent surgery at Wolfson Children’s Hospital again in February, but this time the AVM was caught before it bled, enabling his parents to discuss treatment options. Ultimately, they chose another open-skull surgery to remove it.
For those with AVM, there are three options. The first, which Sebastian had both times, is to open the skull and surgically remove the tangle of blood vessels. While more invasive, the results are immediate. Another is radiosurgery, in which a beam of radiation is aimed into the AVM, triggering a process that causes the blood vessels and their linings to get thicker and shut down from the inside. This has an 80-to-90 percent success rate, but can take two to three years to work, leaving open the risk of another brain bleed during that time. Embolization or endovascular therapy is a third option, performed by threading a catheter up through the groin and into the AVM where obstructive material such as dye is injected to permanently block blood flow to the area. This option works best when the tangle is a small one.
“Which option is best really depends on the situation, but a child who has access to all three ultimately will do better in the long run,” said Dr. Hanel, “We have all three available at Wolfson Children’s Hospital.”
According to the American Stroke Association, stroke is one of the top 10 causes of death in childhood, and occurs in about one of every 4,000 births. Of children who survive a stroke, 50 to 80 percent have permanent neurological deficits, most commonly total or partial paralysis on one side of the body.
“Pediatric stroke is more common than most people think, and has many different causes,” said Dr. Aldana. “Most strokes have serious effects on children’s lives. The Cerebrovascular Center at the Wolfson Children’s Hospital Neuroscience Institute has experts available to diagnose and treat the various forms of pediatric stroke. Sebastian’s case illustrates how children who have suffered a stroke can make a great recovery, but need specialized follow-up care to prevent other ones down the road.”
Today, Sebastian is 10 years old and working on regaining his strength through therapy that includes swimming and exercises to strengthen his core muscles. His hard work and optimism are definitely paying off.
“Sebastian has a very positive outlook on things,” said Carlos. “Even when he was just recovering from his first operation and had a much more noticeable limp, he never wanted to stop playing with the other kids, even though he was always slower. He keeps on going – he doesn’t let anything stop him.”