Meet Emily — Stroke at age 14
As a congenital heart patient, Emily’s courageous journey began at birth in December 1996. At one month old, she underwent open heart surgery to repair Transposition of the Great Arteries and had a pacemaker implanted. Emily also had a mild leaky aortic valve, which was controlled with medications through the first fourteen years of her life. It was a forgone conclusion that, at some point in her life, the valve would require replacement.
Emily had several pacemaker replacement surgeries throughout her young life, but the wonderful care she received from her cardiologists allowed her to lead a relatively normal life. She began dance lessons at five years old (concentrating in tap and hip-hop) and participated in her dance school’s recitals every year. She took up figure skating at seven years old – competing on a synchronized ice skating team and in individual competitions. She enjoyed school and was a model student. In the summer of 2011, preparing to enter high school at the age of fourteen, Emily began developing symptoms which indicated it was time to replace her leaky aortic valve.
Emily’s valve was successfully replaced during a 4-5 hour surgery in October 2011. All indications were that there were no complications. The morning after surgery, while Emily was still in ICU recovery and under heavy sedative and pain medications, a nurse entered the room and walked around the bed – gently running her fingers over Emily’s arms, legs and feet. We watched as Emily responded by reflexively moving the appendages on her right side, but there was no response from her left side. We knew this was not good. Within an hour a CT scan was performed and our fears were confirmed: She had suffered a significant right MCA stroke either during or shortly after surgery which completely paralyzed her left side. We were shocked and devastated.
The cause of Emily’s stroke was never 100% determined. However, the post-surgery CT scans revealed that Emily had a couple of narrow blood vessels in her brain. Additionally, there was a tiny calcium build-up in one vessel that the doctors believed had been there for a while. In a 14 year old without any history of neurological issues, these abnormalities were neither suspected nor anticipated. The conclusion was that the most likely cause of the stroke was the perfect storm: The reduced blood flow which normally occurs while on the heart-lung bypass machine, coupled with the vessel abnormalities, had created a condition that starved her right MCA of blood. Yes, a new journey had begun.
Since that day 4 ½ years ago, Emily has faced her long and challenging recovery with the determination of a champion and her accomplishments are many. Hard work, therapy and excellent medical care have helped her regain significant use of her left side. She developed seizures a few months after the stroke, but with medication she’s been seizure-free for three years. In addition to all of her inpatient and outpatient therapy sessions, Emily took up therapeutic horseback riding to aid in her recovery. While her high school years were not what she envisioned, she was an AP Scholars graduate and graduated on-time with a 3.8 GPA. Emily is currently taking classes at Northern Virginia Community College with the goal of transferring to Virginia Commonwealth University and majoring in Interior Design. Pre-stroke, she was left-hand dominant and has since learned to write and draw with her right hand. Emily can no longer compete in figure skating competitions, but she is back on the ice again taking one lesson each week. Lastly, Emily has obtained her learner’s permit in hopes of driving someday.
Emily is an inspiration to many. At her 2015 high school graduation ceremony she was acknowledged by her principal as a student who inspired him each and every day for her determination and courage. Emily is our inspiration.
