Kristie on our Contributor:
Nicole Gantz Murray serves as the Director of Development for The Brain Recovery Project, a non-profit organization dedicated to helping children reach their full potential after brain surgery to stop seizures. Her youngest son, Ronan, underwent a functional hemispherectomy at the age of 10 months at the Children’s Hospital of Philadelphia to stop his intractable epilepsy. Nicole lives in Philadelphia with her husband, Jonathan, and Ronan’s big brother and best friend, seven-year-old Declan.
Fate intervened this past September while I attended the Global Genes Summit in Irvine, CA. I was pouring myself some coffee to fuel the long day ahead and chatting with someone in line. I shared, “I am here because my daughter, Mickie, is a living miracle. They removed her parietal, occipital and temporal lobe of the left hemisphere of her brain for epilepsy. Now she’s seizure free!” The words were still leaving my lips when I heard a gasp from behind me and turned to see a beautiful woman with a big, bright smile. She said, “Me too! My son had a hemispherectomy for epilepsy.” Nothing could connect me faster to another human being. We had both walked the walk. She knew the despair, fear and devastation that still scarred my mama-bear heart. She understood the helplessness and then the answered prayer. Our babies’ precious, little brains had survived the unthinkable, all before the age of one. And we were here, driven to help the families behind us. The admiration I have for her is immeasurable. I asked her to share her story here, as an offering of hope and inspiration to our kindred families still in the fight.
Ronan was born with a rare brain malformation, discovered shortly after birth when he began having seizures at less than a month old. The prognosis given by the doctors was grim. Due to the early and aggressive seizures, they informed us – “he may never walk, he most certainly will have trouble communicating, and he may never lead an independent life.” It was devastating news to hear and absorb as we held our perfect newborn baby.
At three months old, in addition to the partial seizures he was having daily, Ronan also developed Infantile Spasms, a catastrophic and devastating form of pediatric epilepsy. Some days Ronan would have 30-60+ seizures. After trying and failing six different anti-seizure medications, Ronan’s team recommended hemispherectomy surgery to disconnect and remove most of the left side of his brain. On October 23rd, 2013 at only 10 months of age, Ronan had a left hemispherectomy at Children’s Hospital of Philadelphia. Making the decision to remove half of your baby’s brain is not a decision any parent would ever want to face. Though the surgery often saves a child’s life, and it certainly saved Ronan’s, it also comes with side effects and lifelong complications and challenges a child must overcome or manage. Removing half of a child’s brain leaves them with hemiparesis, a weakness of the opposite side of the body and very little functional use of the affected hand. Additionally, there can be auditory, visual, sensory, and other learning and behavioral challenges as well as ongoing orthopedic issues that must be managed.
Ronan turns five on Friday and is going on four years of seizure freedom. He jumps, runs, sings, and relentlessly teases his big brother. He can recognize most of his shapes, most numbers, and is working hard on recognizing the letters and sounds in the alphabet — all things that typical pre-school children are working on at his age. He has an incredibly sharp memory and just revealed to us that he knows the entire Pledge of Allegiance and the lyrics to God Bless America (both of which he learned at school). His journey is not without challenge. Ronan does struggle with many bi-manual tasks and fine motor tasks. We also expect that, due to his visual and auditory impairments, reading and learning in a typical classroom (i.e., noisy!) may be difficult but not impossible. Ronan continually demonstrates an endless ability to learn and adapt. As his parents, we are committed to ensuring he has what he needs to thrive. I am so honored to be his mommy and excited to see what he does next!
By Nicole Gantz Murray