I met Salini Bowen in graduate school at Pepperdine back in the mid ‘90s, and we’ve have been friends ever since. We have shared a lot — deep conversations about our careers, marriages, kids, aging parents, relocations and everything in between. As we all know, life can take lots of twists and turns, but hearing that Salini’s healthy, athletic 13-year-old daughter had a stroke was beyond anything we could have imagined. Strokes happen to older people, not kids.
But the fact is that strokes do happen to kids, and Suriya has recently launched an awareness campaign to equip parents and caregivers with critical information to spot the signs of pediatric stroke and to act fast in seeking medical care.
I’m happy to share that Suriya is currently a junior in high school in San Diego, plays on her high school’s tennis and lacrosse teams and just completed her first half marathon. She is also an avid board game and pickleball player and plans to study neuroscience in college.
Here’s our recent chat with Salini and Suriya, who are bringing awareness to pediatric stroke through Suriya’s program Stroke for Change:
Salini, tell us a little about the day the stroke happened.. What were you doing and what were your first thoughts?
It was a normal weekday like any other weekday for an 8th grader. Suriya was home after school, eating a snack before we had to leave for lacrosse practice. She suddenly leaned forward, frantically pointing towards her head and kept saying, “Hurt, hurt, hurt.” She said that she had a really bad headache and felt nauseous. She started to vomit. At first I thought it was Covid because headaches, nausea and vomiting are some of the symptoms. Suriya felt incredibly tired and had difficulty getting up from the couch. She said that she couldn’t move her left arm or leg. Initially, I thought the left side of her body fell asleep. Then I started to wonder, “Is this a stroke?” But strokes do not happen to 13-year-olds. They happen to older adults, elderly people. At this point, we called our pediatrician, who advised us to take Suriya to the closest emergency room asap.
How long did it take for doctors to determine that this was, indeed, a stroke. What was going through your mind at that time?
Once we got to the ER, the doctors immediately ran a CT scan, which showed that Suriya had a brain bleed or rupture as a result of an arteriovenous malformation (AVM). AVMs occur when a group of arteries and veins incorrectly connect in utero — typically in the brain or spine. In her case, the AVM was in her brain. When we heard the news, we were in shock and disbelief. And then we were scared for our daughter. We saw that one side of Suriya’s face had started to droop. Suriya was transported to Children’s Hospital ICU and stayed the next several weeks. She had brain surgery to remove the AVM (known as AVM resection) and then intensive rehabilitation and physical, occupational and speech therapy for weeks thereafter.
Suriya, what do you remember about that day?
I remember it being a completely normal day up until it wasn’t. That evening I was supposed to go to lacrosse practice. I told my mom I didn’t want to go because I had a really bad headache, and headaches weren’t common for me prior to the stroke. I ended up staying home and resting on the couch, and just under an hour after the initial headache, I started feeling sick to my stomach and began throwing up. I thought I had a normal stomach bug, so I slept it off and thought nothing of it. My dad came home and woke me up when we noticed that I was slowly sliding off the couch. That’s when I fully realized I had no control over the left side of my body, no matter what I tried to do. We immediately called my pediatrician, and she advised us to go to the closest hospital. I was awake and aware during the majority of this period despite the fatigue and drowsiness; however, my pediatrician had stressed not to fall asleep: “Stay awake for as long as you can until you arrive at the hospital!” After my first CT scan, the doctors determined that I had a stroke. I was completely terrified, full of questions and unsure what was going to happen to me within the next day, next several days, my future. Will I be in a wheelchair? Will I walk or play sports again? In the back of my mind, I was thinking that I do not want to be paralyzed for the rest of my life. The fear of being paralyzed was one of my biggest motivators to keep me going through all the therapies, the mind-splitting headaches, the nausea and doubts.
Suriya, tell us a little about the recovery and how this process has affected your daily life.
The recovery was very difficult. There were bad days — and really bad days — with constant headaches, pain, nausea and vomiting, especially during all the physical, occupational and speech therapy post-surgery. I knew I couldn’t give up because I had already gotten this far. However, I was still feeling so fearful that I wasn’t going to make a full recovery and get back to my normal life. I had to give it a shot and keep going every day in an attempt to make a full recovery. After three years, I am almost there.
Are there lingering effects from the stroke that you’re still dealing with?
I still have daily headaches that range from mild to intense in severity, and some minor left-side weaknesses. And while there are physical effects that you can see, there are some lingering effects that you don’t see. I’m working on both as part of my journey.
Do you feel comfortable talking to your friends about it?
I don’t necessarily bring it up unless my friends ask about it. I don’t always talk to them about the raw emotions and experience surrounding what happened. Mostly because I don’t want to feel like a burden to them or don’t want them to listen to me complain.
What inspired you to start this program called “Stroke for Change – Raising the Awareness of Pediatric Stroke”?
I want to bring more awareness about pediatric strokes, because my family and I had no idea strokes could ever happen to people at such a young age. I had always assumed it happened to older people. I want to help other kids so there is no delay in diagnosis or misdiagnosis, and they can get immediate medical care. A misdiagnosis or delayed diagnosis can result in more severe neurological damage and lifelong disabilities.
What do you hope to accomplish through this program? To raise the awareness of pediatric stroke to more people, parents and caregivers so if they are ever in a similar situation, even if it wasn’t their child, they would know that strokes can happen to kids, recognize the symptoms, and take action. Like adult strokes, immediate medical attention is critical for diagnosis, treatment and recovery. Thanks to the tremendous amount of information and awareness created to educate families about Sudden Infant Death Syndrome (SIDS), thousands of lives have been saved. However, pediatric strokes happen to more kids under 17 years of age than the incidences of SIDS, but so few of us are aware of this fact. Pediatric strokes happen and I want families to know the signs and take action.
What would you want others your age to know about pediatric strokes?
Although it doesn’t occur often, there is always the possibility of it happening. We should recognize the symptoms if they happen to one of us or our friends and seek immediate medical attention.
What would you share with another teen who had a similar stroke and is now going through the recovery process?
I would say that I know it is really challenging and it always feels like you’re not making any progress, but there is progress and it’s all worth it in the end. I’m sure you are tired of hearing “There’s light at the end of the tunnel” but it’s true! You got through some of the toughest moments of your life, and you’re are almost there. You can do this. You have so many people around you — family, friends, doctors, nurses, therapists — who are there to help you. And I am also here to be of any support if that’s helpful.
Salini, what would you want parents to know about pediatric strokes?
When I was a new parent, I was so hungry for any information related to being a parent. Everyone hears about Sudden Infant Death Syndrome (SIDS) however one doesn’t – or at least I didn’t – hear about pediatric strokes. I want parents to know that strokes can happen at any age – from in utero, infants all the way to adults and this information should be part of any parenting class.
Use the American Stroke Association’s easy mnemonic of F.A.S.T. to recognize symptoms and then seek immediate medical attention.
F = FACE DROOPING. Does one side of the face droop, or is it numb? Ask the person to smile.
Is the person’s smile uneven?
A = ARM WEAKNESS. Is one arm weak or numb? Ask the person to raise both arms. Does
one arm drift downward?
S = SPEECH. Is speech slurred? Is the person unable to speak or hard to understand? Ask the
person to repeat a simple sentence.
T = TIME TO CALL 911. If you have any of these symptoms or see someone else having them,
call 911 immediately!
What would you tell another mom whose child has recently experienced a pediatric stroke?
First, you are not alone. Your child is getting the best care possible, and your love and support will help buoy their spirits and help him/her weather this situation and their road to recovery. While there may be difficult days, hopefully the good days will outnumber the challenging ones. Also seek support group(s) through your medical team, American Stroke Association and your community.
We were very lucky. The outpouring of love and support from our community and her medical team helped Suriya on her road to recovery. While we are still on this journey, every day we are one step closer to full recovery and we are proud of Suriya and the young adult she is becoming. One who is a stronger version of herself because of her challenges.
Check out Suriya’s story at strokeforchange.com . For more information on pediatric stroke, check out the American Stroke Association at StrokeinChildren. To connect on social: @strokeforchange on Instagram and Facebook.
