Back from the brink: How Boston Children’s saved my life

Bryan, who had surgery to remove an AVM, poses for a picture

I was first rushed to Boston Children’s Hospital on my very first night of summer vacation in June 2015. I had been at an eighth-grade graduation party when a brain aneurysm caused by an AVM (arteriovenous malformation) ruptured.

All the blood and swelling in my head generated the worst headache I had ever felt. I threw up, passed out, and my friends called 911. At Boston Children’s Hospital, Dr. Edward Smith was called in just hours before he was scheduled to leave for a medical conference in Germany. He stopped the bleeding and removed the excess blood from my brain. In doing so, he kept me alive at a time when I was only expected to live another 30 minutes.

When I awoke from a coma three weeks later, I was covered in wires, had tubes down my nose and throat, and faced significant cognitive deficits and memory loss. I was half-blind and paralyzed everywhere left of my spinal cord. I couldn’t sit up, couldn’t talk, couldn’t read, and I couldn’t even write my name on a piece of paper. My doctors said I would be lucky to walk again. 

Bryan, who had an AVM, poses on a mountainside

Ultimately, my AVM needed to be removed because it placed me at risk of another brain hemorrhage. In early August 2015, after weeks of early-stage rehab with therapists at Boston Children’s, Dr. Smith and Dr. Darren Orbach worked together to remove my complicated AVM. They worked for 14 straight hours – from 7 a.m. to 9 p.m. – and ultimately achieved what one surgical fellow said was, “the closest thing to a miracle I had ever seen in an operating room.”

But in spite of the magic they worked, I still faced years of rehabilitation. After the surgery, I was transferred to a rehabilition hospital, where I underwent a month of arduous physical, occupational, and speech therapy. The rehabilitation was so exhausting that I would often return to my room and sleep for the remainder of the day.

In September 2015, I hobbled up my own driveway with a quad-cane, but my liberation from the hospital was not what I had expected. I was testing at a third-grade reading level and a kindergarten math level. My parents put a baby monitor in my room because I still lacked the ability and independence to even get myself out of bed. My progress was so slow it was almost like watching myself grow. Oftentimes, the only reason I persevered was the understanding that I didn’t have any better options.

I consistently heard that my recovery was going to be a “marathon, not a sprint” – an expression I’m still coming to understand. But while marathons have an end, I sometimes felt like my path toward a full recovery would never end. There were times when I asked myself questions like, “Will I ever again do anything I love?” “Will I ever be as good as the old me? “Will I ever feel successful?” 

Bryan, who had an AVM, speaks at a TEDx Talk
Bryan speaks at a TEDx Talk

However, four years later, I am doing much better. I have returned to school full-time to earn highest honors, have given a TEDx Talk, and have raised over $43,000 in an effort to thank Boston Children’s for saving my life. That said, I still face a number of continuing disabilities, and there are many elements of my life I will never regain. But I have worked to share my story and talk to other patients in similar conditions as mine to try to instill a sense of realistic hope.

I will forever be indebted to Boston Children’s and everyone who helped me get to where I am today. I now realize how lucky I was to be in the care of some of the best experts in the world, whom I regard as my “eternal superheroes.” My family has stayed in touch with many of my ICU nurses and physical therapists — we still often get together outside the hospital like a big family. There is something so special about Boston Children’s that, even though it was home to the two most traumatic months of my life, I still derive a sense of hope and joy each time I go back.

Learn more about the Cerebrovascular Surgery and Interventions Center.

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