Meet Ayden – Stroke at age 13

Ayden was a healthy boy who had just turned 13 in September 2018. One month later, on October 15th Ayden headed off to school feeling fine and ready to see his friends. It was a typical fall day in Colorado, a little chilly, but Ayden went out to recess without a coat. It was normal for him as he often said he didn’t get cold. Suddenly, he was extremely cold and shaky which was not like him, so he thought he would go in and get his coat. Ayden would later describe that he felt like he had “hypothermia” and that he “suddenly heard a loud pop like something had popped in his head”.

Ayden likes to joke and be funny, so when he fell to the ground shaking and shuddering his friends thought he was joking around. They noticed something was not quite right and tried to lift Ayden up and carry him to get help. Ayden had no use of his right side from his head to his feet. His friends ran and got teachers, who then lifted Ayden to safety inside and called 911.

At first the teachers thought that Ayden had fallen and hit his head. There was a teacher present that knew the signs of stroke but was confused as to why a teen would be having a stroke. Ayden was slurring his words when tried to speak, the right side of his face was droopy, and he had no feeling in his right arm and right leg. An ambulance finally arrived at the school and he was taken to a nearby hospital.

Once I got the call from the school, I raced to the hospital and immediately knew something was very wrong. Everyone seemed to know I was Ayden’s mom and I slipped right through security. I have been in the medical field for 20 years and as soon as I saw Ayden, I knew he was having a stroke. He had all the classic signs — a drooping face, one-sided arm weakness, and slurred speech. But since he was only a teen, the medical team didn’t immediately think stroke. They did do testing on him though. The only thing I could imagine was he must have a brain tumor causing a stroke.

When they brought Ayden back after testing, he was vomiting and started to crash. When things started to settle down and I could touch my son I could see how scared he was. He was crying trying to explain he could not feel the right side of his body but as he talked his words were slurred, which scared him more. I reassured him he was going to be okay, but at the same time I was asking the doctors if he was going to die.

The doctors informed me that Ayden had indeed had a stroke and he would need to be airlifted to a top stroke hospital. It was determined that Ayden had suffered an ischemic stroke in his basal ganglia. The doctors performed clot retrieval on him even though it was not approved for children. It was successful and most likely saved his life.

After the surgery, Ayden had to learn to walk again and regain use of his right hand. He did some therapy in the hospital but was released after only 5 days. We were not given any follow-up visits or instructions of what to do next. It took 2 months of advocating for Ayden to get him in therapy and to a stroke clinic for children. After extensive testing there was no cause found for Ayden’s stroke. So, we don’t know if he is at risk for more. Ayden missed most of his year of school (7th grade). He was not in school for a variety of reasons. He missed a lot of school because of brain fatigue, not having stamina to get out of bed let alone go to school. Ayden also missed school because of ALL the follow–up doctor appointments trying to find out why Ayden had his stroke. We finally got him into therapy after a couple of months, so he also missed school for that.

Ayden’s recovery has been long and difficult. He had to relearn basic skills. His memory was affected so he needs constant reminders for normal daily life skills like brushing his teeth and getting dressed. He now has ADD, anxiety, and depression. Ayden wears an AFO on his right leg for balance and walking. He has to take Aspirin daily, depression medication, and sleeping medication. Since his stroke was in the basal ganglia, it has affected his executive functioning.

Someone once told me as I was talking about myself and Ayden’s stroke that “Ayden had the stroke not you”. That has always stuck with me because as a parent with the relationship Ayden and I have, I feel like I went through the stroke with him. I cannot fully put into words the feeling I had in the emergency room watching my son almost die. I felt like I died that day, my life flashed before me, the past and the future. My heart felt as if it fell out of my body and on to the floor. I remember them asking if I wanted to sit down, I think I was shaking. It surprised me how well I was holding it together as I went through a stroke with my son. I can’t tell this story without including the fact that I was praising God and cursing him at the very same time.

I don’t know how parents get through “losing” a child to a stroke. Even though Ayden did not die, he is not the same child that left for school that day. I am grateful to the doctors who saved Ayden’s life, but I grieve for the son I had before his stroke. I know I am fortunate that Ayden survived his stroke, and I can’t even begin to imagine the grief that parents go through who do actually lose their child.

My weeks are filled with working as a single mom and trying to balance Ayden’s doctor appointments. I have PTSD from Ayden’s stroke. I often ask myself, when will I be able to walk into Ayden’s room to check on him and not have to prepare myself that he could be dead from another stroke. Two years post stroke, Ayden is still in recovery, but he will never be fully recovered from his stroke. I know that God has a plan for Ayden and me through this journey, I’m just not sure what it is yet. I do believe that Ayden’s future is bright, and I cannot be more grateful for that.

On the positive side, Ayden now plays the guitar and loves music, which he did not have an interest in before his stroke. Ayden still has his fun and outrageous personality. He also still has a lot of friends at school who don’t care that he wears an AFO and has “differences”. Ayden is now in high school and has a 504 plan which gives him accommodations to help him in school. He hopes to go to college and live on his own.

We do struggle to find therapy for Ayden because treatment for teens that have had strokes is not common. I continue to seek treatments that will help Ayden to be as independent as possible and live the life that he wants. Overall Ayden is a happy teen, and it is a miracle that he is alive today. I am grateful that his teachers called 911 so quickly. And I am grateful that Ayden was able to have the clot retrieval surgery even though the treatment hasn’t been approved for children and teens. I hope that by sharing Ayden’s story I can help other families know they are not alone and help raise awareness that strokes can happen to anyone at any age.