Dear parent of a child with hemimegalencephaly,
I'm pretty sure our journey with Myles started in the womb. He was quite the mover in the womb and the doctors reassured me that an active baby is a healthy baby. The day he arrived was such a joyous one, until it was time for his first bath. The nurse noticed that he was hiccupping and making bubbles with his tiny little mouth, at least that's what it seemed like. She said with little concern in her voice that she would just go check for fluid in his lungs and left us with the sweet smelling baby wash, and the cute tiny tub and washcloths.
Little did we know our world was about change. After 20 minutes I started to worry. I sent my husband out to look for them and as he passed the Pediatric Intensive Care Unit (PICU) the nurse was walking out... without our son. We soon found out that our son was suffering from seizures caused by a rare brain deformation called hemimegalencephaly. The cells in the left hemisphere of his brain overgrew during his time in the womb and it caused deformations in the cells, which also caused the cells not to align properly. This was what was causing his seizures. He was immediately put on seizure medications before we even left the hospital. His seizures continued daily, on a good day he had an hour, on a bad day five or six an hour.
After a few months of trying to find the right "combo" of medications with no noted progress and the many trips to the emergency room for seizures that seemed to be getting worse, I decided I needed a second opinion. Our neurologist referred us to Children's National. After just afew minutes of meeting with Phillip Pearl, MD, he told us something I wasn't expecting to hear... we might be able to fix this. He then proceeded to tell us about a surgery called ahemispherectomy that could possibly cure his seizures.We were so excited yet scared to death, since the procedure would require removing the left side of his brain.
We went home and weighed our options while Dr. Pearl put together a team to take on Myles' case. The options were so clear, do we risk our son's life and abilities that he has now or do we put our faith in a team of doctors that could improve his quality of life and abilities to achieve? We chose to move forward with the surgery and handed our 5-month-old son to a team of doctors lead by an amazing neurosurgeon, Amanda Yaun, MD. The longest day of our lives began. The surgery took a little over 12 hours.
The hospital staff were amazing. They gave us a pager so we wouldn't miss an update if we needed to step out of the waiting room. They also had a concierge who checked on us if we needed anything. The doctors on the surgical team never left our son's side, even when the shift change came. When they finally emerged, Dr. Yaun led the way with a comforting grin and said the surgery was complete and he was doing well. Only time would tell at this point if the surgery was a success. Amazingly in no time we realized he was seizure free! By the time we left the hospital at the end of the week he was showing no seizure activity on his EEG and by his first birthday he was medication free.
Myles is now a little over 2 1/2 years old and thriving. He is still seizure free and medication free. We still have a long road ahead but with the amazing doctors following his progress at Children's, I have no doubt in my mind my son's journey will be a miraculous one! We will always be grateful for Children's National and for all the miracle workers they provide.
Myles' mom, Christine