My full name is Williams St. George Hunter. I go by George, St. George when I’m in battle. My parents say they chose this name for me before they knew about my special heart. But when doctors told them I would have to fight for my life, they knew it was the perfect name for me. Christian legend includes the story of St. George who saved a king’s daughter by slaying an evil dragon and released her village from mortal danger. When I am not fighting my own dragon, I enjoy playing outside, preferably the beach, with my family. People see my face and always say, “He is so sweet, what an angel” but my parents say that I am really quite a rascal. I love (and torment) my five year old brother, Henry. I love (and torment) our Brittany spaniel, Tilly too. I am fearless which my Mama says makes her both proud and scared.
What’s your medical story (the short version)? How does the Melody® fit in?
Life was good. I was growing and floating around nice and cozy and then my parents took me to an appointment called the “anatomy scan”. Pretty quickly I realized that my Mama and Daddy were sad and I heard the doctor say I had several heart defects – critical aortic stenosis, severe mitral regurgitation and an atrial septal defect. Add those up and you get “probable fetal demise” and a recommendation of “termination”. My parents were devastated but rallied quickly and put on their battle armor and called Dr. Tworetzky at Children’s Hospital Boston. The team accepted my case and on August 16, 2011 at 25 weeks gestation I had a fetal cardiac intervention where they ballooned open my closed aortic valve. It was a technical success but my terrible mitral valve remained a wild card in my prognosis. I was born in Boston on November 22, 2011 and was observed for 13 days before they told us we could head home to Charleston. I had tons of appointments at my local hospital over the next seventeen months. We were “kicking the can down the road” as Dr. Tworetzky says. My left ventricle was remodeling well but my (bleep) mitral valve continued to cause problems. I tried to hide how poorly I was feeling for several months but on April 20, 2013 I had to be flown to CHB on a med-flight. In Boston it was determined that I needed more than a heart catherization on my now stenotic and regurgitating mitral valve. On May 7, 2013 I received the Melody® valve. After my battle wounds healed from fighting my dragon, I felt like a new person. If anyone thought I was “spirited” before surgery, they should see me now that I have energy.
How do you think your life is different because of the Melody® valve?
In the months leading up to getting my Melody® valve I couldn’t eat anything. My Mama cried during most mealtimes. I wasn’t being difficult. I just didn’t have the energy to eat. I was hungry though, so I drank a lot of Pediasure. And I threw up most of it. I went from being a chunky baby to a scrawny toddler. I only gained one pound in 7 months. Those were not the best times. The night I was released from the hospital after my Melody® surgery I had Kung Pow chicken, steamed broccoli and a bowl of rice. The next morning for breakfast I had a croissant, a banana and scrambled eggs. I felt fantastic. I have gained eight pounds in the 10 months since my surgery. My thighs are back to a respectable size and the light has returned to my eyes. Now my Mama smiles and tells stories at mealtime.
What would you like to tell everyone?
I hear my parents say often that we are “blessed beyond measure”. A lot of people hear that I have a special heart and they do not understand how my parents can feel that way. But when you think of all the pieces that have had to fall into place in order for my family to be led to Boston where they met the doctor who was clever (adults call it “innovative”) enough to use the Melody® in the mitral position, you have to admit, it is pretty special. The only thing that could make my story better would be if I could add to it that I helped more children who needed it to get a Melody® valve.
A few words from George’s parents
The Melody® valve in the mitral position has given us our child back. It has also already spared George from having a second open heart surgery only five weeks after his first surgery. He failed to mention above that he developed a paravalvar leak five weeks after receiving his Melody® valve. Were it not for the expandable nature of the valve, Dr. Emani would have had to perform another surgery to seal the leak. Instead, the valve was ballooned (twice) thus sealing the leak. Without the Melody® valve George would probably still be suffering from extreme anxiety brought on by the trauma of two surgeries so close together at a critical developmental point in his life. Instead, he is thriving, developing at lightening speed and in general delighting anyone who meets him. Thank you for giving us our child back. We would love to pay it forward and help you save more children. Please approve the Melody® for the mitral position.