I was so excited when I stumbled on Children’s Craniofacial Association. This organization embodies everything that my family and I value. They are an incredible support group that normalizes facial differences.
Henry’s siblings have seen the negative side and how hurtful others can be when you are born different. They can’t understand why kids stare at Henry or say mean things. They have also been teased because their brother is different. Any time they do something new, they have to start over by confronting all of the stares and answering questions; they do it with such grace and kindness. Fortunately, now, when my children see others who were born different, they go out of their way to smile and say "hi!" Microtia has been a reminder that we are all made differently, and we all have something great to share.
Our family motto is always be kind and never give up!
It is harder for Henry to handle the comments and stares. For the last two years, Henry has asked for a “big ear” and each time I thought, “Well, this will pass, he’s too young to understand this choice.”
I have always said if Henry wants a “big ear,” then I will move mountains to get him one, but he needed to be old enough to understand his decision. I was thinking he would be at least ten or eleven before we needed to make this decision and explore this route. However, over the summer, it became incredibly clear that six was the age he needed to be to make this decision!
He continued to ask for a “big ear” and I continued to say, “What? Big ears are lame,” and “I want a little ear like yours!” He would always roll his eyes and that would be the end of our conversation.
Well, during quarantine, we cooked all of our meals at home, never ate out, and Henry always helped me cook. I noticed he had been eating a ton of food – way more than normal. At first, I thought, “Wow, he’s going through a growth spurt!” Then one night, he ate two hotdogs, two helpings of macaroni, and three helpings of beans.
He scooted back from the table and said, “Oh my belly hurts, I’m so full!”
I said, “Yeah, why did you keep eating?”
His response broke my heart.
He said, “Well, I gotta eat a lot because I gotta get bigger, bigger, bigger! If I eat enough food, then I can grow bigger, and when I grow bigger, MY EAR WILL POP OUT LIKE A FLOWER!”
I just about lost it. I had to explain that is not how it works, and he just didn’t understand.
Then, with tears in his eyes, he said, “Mommy, why did God make me special with a little ear? I just want to be born like Kalem, Ellie, Sully and you, with TWO BIG EARS!” And with that, I knew he was old enough to understand what it meant to get a “big ear.”
The very next day, I went on a search to find out how I could make his wish come true. There are several doctors that can create an ear like shape, but most of them do not specialize in making ears or the other method is to cut three of his ribs in order to create an ear. Since the ear is the most challenging and intricate body part to recreate, there are very few doctors qualified to perform an ear reconstruction, let alone create a high-quality realistic ear. This is my baby boy, and I didn’t want a makeshift ear. I wanted a professional ear; an ear that would bring out his confidence, one that he would not regret, and one that he would be proud to show the world!
I finally found the doctor who was perfect for Henry. Her name is Dr. Sheryl Lewin, and she is currently the only one in the world to have created a 3D-scanned Porous Polyethylene Implant Ear Reconstruction (P.I.E.R.). Her work is truly amazing and life changing for her patients! Children and adults come from all over the world for her innovation, advanced skills, experience, and track record. The eight-hour surgery would require us to stay in California for a minimum of two and a half weeks to ensure a successful recovery. Due to her medical title as a Plastic Surgeon, she is out-of-network for every insurance. She and her team work very hard to fight insurance for patients with microtia because it is not a plastic surgery; it is a surgery for medical necessity. During Henry’s ear reconstruction, Dr. Lewin will also implant a bone anchored hearing aid.
Annie Reeves and CCA have been amazing in helping make Henry’s dream of having TWO BIG EARS a reality. Henry was so excited that he even signed his own application for the CCA Financial Assistance Program paperwork. This support means the world to Henry and to us. Without it, people like Henry would not be able to get their wish of TWO BIG EARS (and other lifesaving surgeries). I remember the exact moment that I read Annie’s email approving our funding. I was shouting with so much excitement that my neighbors could hear me!
We are so incredibly grateful and crazy thankful for her and the donors of CCA who make our children’s lives so much healthier and happier.
With so much love,
Henry, Stacy, Josh, Kalem, Ellie and Sully Noble
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