Helping hands

A 12-year-old stroke survivor’s journey of resilience

Three years ago, while sitting with friends at lunch, 12-year-old Angel Nguyen stood up and collapsed without warning. Her only symptom was a headache. A large aneurysm in her brain had burst, which caused internal bleeding and a dangerous buildup of pressure in her brain. This triggered a stroke that required emergency surgery to save her life.

A rare pediatric condition

Angel’s pediatric stroke was the result of a subarachnoid hemorrhage caused by a ruptured middle cerebral artery on the right side of her brain. Typically seen in adults over 50, this type of stroke is highly uncommon in children, and even more so of the size of the aneurysm Angel experienced.

“In adults, usually any aneurysm in the brain larger than 1 centimeter in diameter is pretty big. Angel’s was 3 1⁄2 centimeters,” said Stuart Fraser, MD, assistant professor in the Department of Pediatrics and pediatric neurologist at UT Physicians Pediatric Specialists-Texas Medical Center.

Stephen Fletcher, DO, professor and Dr. Marnie Rose Professor in Pediatric Neurosurgery at McGovern Medical School, and pediatric neurosurgeon at Children's Memorial Hermann Hospital, performed a craniectomy to stop Angel’s bleeding and relieve pressure on her brain. This involved removing a section of her skull, called a bone flap, to access the brain. Angel spent a month in the intensive care unit following surgery. A few months later, the bone flap was surgically reattached to her skull.

The long and difficult road to regaining her memory and bodily movements proved daunting, but Angel continues to get better. Thanks in part to occupational therapy clinical trials, Angel was able to find motivation and the resilience to overcome and begin again.

“If I didn’t stay active with therapy, how would I help people in the future?” she said. “That’s what kept me going.”

Her dad, Lawrence Nguyen, described the grueling process. Angel had to regain her memory and relearn basic functions — eating, talking, sitting, walking, and even recognizing family members.

“She didn’t remember who I was,” Lawrence said. “She was like an infant, learning everything again. Before the stroke, she was healthy and active — running, playing, swimming, and everything.”

The immediate impact on Angel’s life was challenging and made her feel useless.

“Everything I learned my whole life suddenly went away,” Angel said. “It felt like I couldn’t do anything anymore.”

Value of collaborative care

Fraser, who began caring for Angel after her surgery, emphasized the importance of collaborative care in cases like Angel’s. A pediatric stroke requires a specialized team and a long recovery. Fraser and his colleagues, , Spiros Blackburn, MD, associate professor in the Vivian L. Smith Department of Neurosurgery; Manish Shah, MD, professor in the Department of Pediatric Surgery, and pediatric neurosurgeon at UT Physicians Pediatric Surgery; and Simra Javaid, DO, assistant professor in the Department of Physical Medicine and Rehabilitation, and attending physician at TIRR Memorial Hermann, reviewed Angel’s case and collaborated to make decisions. A subarachnoid hemorrhage is medically complex and, in addition to direct damage to the brain, may lead to serious complications.

“We had to carefully monitor electrolytes in her blood, her blood pressure numbers, and any movements that looked like seizures,” said Fraser, who is also the director of the Pediatric Stroke Program at McGovern Medical School at UTHealth Houston. “The good news is once you get through that period, which lasts a few weeks to a month, patients can start the recovery process.”

Growth and grit

After she was released from the ICU, Angel spent two months in inpatient therapy, learning how to adapt to significant weakness in her left arm and hand. Although she could walk, her hand function was severely limited. But Angel’s determination continued to shine even in the face of daily challenges.

“She didn’t have a functional grasp and release,” said Anna Clearman, an occupational therapist at UT Physicians Pediatric Specialists-Texas Medical Center. “She could stabilize something like a toothpaste tube, but dexterity was limited and not functional.”

Over the past two years, Clearman has worked with Angel as part of a therapy clinical trial. She has seen Angel grow not just physically, but mentally and emotionally. She describes her as more motivated and capable of participating in her recovery now.

“I didn’t give up back then, and I’m still going through recovery today,” Angel said. 

Angel believes anything is possible if you put your mind to it. And she credits her father as her biggest source of support.

While Angel’s left hand remains impaired due to muscle spasms, she uses creative methods to complete tasks, such as using her mouth to pick things up.

Back in school with the help of an aide, Angel is focused on her future. Her goal is to work in a neurological rehabilitation facility to help others like her.

“With my injury, I have experience with it,” Angel said. “I’m proud I didn’t give up back then. Keep yourself motivated and encouraged to keep going. Don’t let anyone tell you anything less.”

Building a new life

One of the challenges for pediatric stroke patients is that they are still developing and have future goals to achieve.

“So, in addition to getting back to where they were in terms of function, they have their whole life ahead,” Fraser said. “Stroke recovery for kids sometimes isn’t just rehabilitation, it’s habilitation. It’s learning new skills to advance to the next thing you want.”

Despite the severity of Angel’s condition, Fraser said Angel’s prognosis is hopeful. The focus now is on long-term recovery and quality of life.

“Kids with stroke can go on to have full, wonderful lives,” Fraser said. “About 75% will have some lasting neurologic change, most commonly weakness on one side. Our team is focused on doing everything we can to help them live it fully.”

Lawrence credits Fraser for his unwavering support and dedication.

“He’s more than a doctor. He sees her like family,” Lawrence said. “Anything new that might help her, he signs her up. I appreciate that.”

Exploring new therapies

Fraser and his pediatric stroke team are pioneering new therapies for patients like Angel, including brain stimulation research, to help children recover more fully. One research study the team is involved in takes advantage of the brain’s plasticity to help kids reach their maximum potential. The study examines the effectiveness of transcranial direct current stimulation (tDCS) in children with arm weakness after stroke. A noninvasive technique, tDCS delivers a low-dose electrical current through electrodes on the scalp.

Angel has participated in two of Fraser’s tDCS studies in the last two years. The first included 10 hours of therapy (two hours a day for one week). The second was a two-week study totaling 25 hours. Clearman said the current study is double-blinded, meaning some participants receive actual stimulation while others don’t.

“Whether or not a subject receives active stimulation, we know that therapy works, and Angel made progress,” Clearman said. “She can occasionally pick things up, which she couldn’t do before. She had me take a picture when she picked up a game piece. It was really exciting for her!”

Fraser is driven by his desire to make a difference for pediatric stroke patients. Experiencing a stroke that changes what their future looks like affects them deeply.

“It’s so important to do everything we can to help those kids who have a stroke or brain injury feel happy and prove themselves and go do all those things that life is about,” he said. “Angel is a spunky young person who never gives up. She is an inspiration for all of us.”