GEORGE’S STORY

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.

 

27 thoughts on “George

  1. I am blessed to have George and his family as close friends … and I can say that the entire family is a blessing … an example of incredible faith and strength …Please sign the petition and support these trail blazing kids as they help others grow strong and contribute to our future generations … God bless them, the doctors and their families.

    • Bryan Huntet

      Thanks, Mother and Daddy. And we certainly never could have done it without your support and without the solid foundation you and Elisabeth’s parents laid for us.

    • Bryan Huntet

      Christy, you went above and beyond for us. George owes you enormous thanks, as so we, his parents. Thank you, dear friend.

  2. Stacey Iofredo

    George is a warrior and so are his parents! We are so grateful for the Melody Valve that has allowed George to grow into such a healthy little rascal!!

  3. Stacy Barnes

    The Boston Doctors saved our Olivia at 11 weeks with open-hear-surgery for valve replacement and conduit placement. She is now 8 years old and is still functioning on the same valve she received at 11 weeks old and doing remarkable. If we can wait another year – she will most likely be a candidate for this life-saving Melody valve. This valve will allow her to be repaired without open-heart-surgery again. Sweet little George’s story is so touching and wonderful. From one heart parent to another – Thank you for sharing your story.

  4. Mel & Pat Hunter

    We are SO grateful that Bryan & Elisabeth did not take the first advise to abort wee George! They had so much courage and faith. We would have missed so much by not having him (and them) in our lives! Grateful grandparents, Mel & Pat Hunter

  5. Susan Cox Smith

    Bryan and Elisabeth, I am just coming across your family’s story through a friend and can’t believe everything your sweet boy has been through. Bryan and I worked together at Southern Progress. So happy to sign the petition and read y’all’s amazing story.
    Susan Cox Smith

    • Elisabeth

      Susan, Thank you so much for commenting! Bryan and I have had quite a fun time trying to guess whose page on which you saw the link. And thank you also for reading George’s story and signing the petition. Cheers!

  6. Catherine Agricola

    St. George and his precious amaze me:)!! Your unwavering faith inspire me:)!! I am simply in awe of all four of you:)!!! May God guide, protect, bless & keep you always!!

  7. Marie Stewart

    We have such an awesome God, and through him miracles are seen everyday. I signed your petition so other parents can have these same miracles. God Bless you and your family. Praying.

    • erhunter

      Hi Marie, we have certainly been extremely blessed many times in George’s short life. We know God has great plans for him and hope being part of this movement to bring the Melody mitral to more children is just the beginning. XO

  8. Marilyn Edmondson

    George you and your family
    have been in my prayers because of wonderful and
    dear friends like Sandy and
    Ron Eller!💜
    God bless you!!!

  9. Ragan

    My heart goes out to you and your precious family. Thank you so much for sharing your story little St. George. You are so brave. My son, Shep was also born with a special heart. We live here in Charleston and on the 9th of July our little boy had open heart surgery at the Levine Children’s Hosipital in Charlotte. He is so strong and doing wonderful. Little George you look so full of life and I know you have the strength to battle anything. Best of luck, my thoughts and prayers are sent your way, little dragon slayer.

  10. Darryle Robinson

    I am so proud of the decision to fight for George by his mom and dad,I have watched George and his parents rom an upclose position since the first day of learning of his special heart. The strength and Faith it took to follow this path has not been easy but the faith of these parents trusting God and handing George over to doctors time and again not knowing the results upfront.I could not be more proud to be father of one of the parents ( his mom) and George’s Papa .

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