John's Brave Journey Back from Brain Injury

Two days after the start of third grade, John was at home playing video games with his dad. He suddenly screamed, “I can’t see!” and then began vomiting and went unconscious. The eight-year-old was rushed to an emergency room in Staten Island where a CT scan showed bleeding in his brain from a ruptured Arteriovenous Malformation (AVM). It was later discovered that John had five AVMs. One of the AVMs, a tangle of blood vessels formed incorrectly during gestation, ruptured and resulted in John suffering a stroke. He was then rushed to Cohen Children’s Medical Center where a neurosurgeon placed a shunt into his skull to relieve the pressure on his brain.  

After 54 days and numerous procedures, John was admitted to Blythedale Children’s Hospital’s Traumatic Brain Injury Unit on Halloween for comprehensive rehabilitation and continued management of his fragile medical condition. Blythedale's Traumatic Brain Injury Unit is the only dedicated post-acute pediatric brain injury unit in New York State. He was cared for by a multidisciplinary clinical team with highly specialized expertise in treating the most severe types of brain injuries.

"When he first got to us, it was at the end of October of last year," said William Watson, PhD, ABPP, Director of Neuropsychology at Blythedale Children's Hospital. "And at that time he was barely responding to anything. He was very deep in a disorder of consciousness (a state of prolonged altered consciousness)." 

The stroke also resulted in right-sided hemiparesis. John could not breathe or eat on his own and needed a tracheostomy and gastrostomy tube. At Blythedale, John began receiving physical, occupational, speech, and feeding therapies.  

“John’s AVM was located in his cerebellum, which primarily focuses on motor function and motor planning, so his speech, walking, talking, and eating were all affected,” said Maureen, John’s mom. “We needed therapies that would help him walk again, talk again, eat, chew and swallow.”  

John received therapies daily and participated in a vision study designed to collect structured assessments for every child admitted to Blythedale to better inform how children will recover from brain injuries.  

Slowly, John began to emerge from his minimally conscious state and began responding. His mom, Maureen, remembers those little victories and made sure to film each milestone, including his first belly laugh and when he said, “mom” for the first time since his injury.  

"Part of my role is to help assess all of the different parts of John's brain as (he recovers)," said Dr. Watson. "So I work really closely with a really great team of therapists and doctors and other members of the team to help them to understand these aspects and then cater their approaches to help him make the most progress possible."

John continues to make progress with blue and pink cotton candy as his ultimate motivation. He also is an avid builder of Legos and he and his father, Danny, work on them together, just as they did before the stroke.  

During his physical therapy sessions, John often must be reminded to slow down as he begins to walk and climb stairs. Maureen recalls that when he was a baby, John didn’t crawl very long before he was walking, and that same tenacity is part of who he is today. For Maureen and Danny, seeing John have fun with his therapists are the wins they get to see every day. 

“Even though sometimes it's hard, watching him joke and play around his therapists, and seeing the bond he has with them makes me feel all warm and fuzzy,” said Maureen.  

Looking back on this journey, Maureen recalled what John would pray for at church every Sunday, which was that everyone would live to 100. Today, she’s grateful to all who now pray for John and his continued recovery.