Making Surgical Decisions for Children with Microtia/Atresia
By Melissa Tumblin, CO H&V Board Member
Founder of the Microtia and Atresia Support Group
Every parent wants the best for their child. As parents, we will do anything for our children including protecting them, providing for them, and making sure they have the happiest life possible. As I watch my daughter Ally begin to grow up from a sweet baby girl into a little toddler, I learn more about her every day. I see her cute personality developing and I notice her funny little character beginning to surface. I’ll kiss her little baby Microtia ear dozens of times while she giggles and smiles back at me. It is days like these that make me feel like I am on cloud nine with Ally and I realize she is going to be just fine. However, there are other days when I am working with Ally on her speech and communication delays and I watch her struggle with sound localization. I will call for her from another room and witness how she has trouble finding me. Sometimes she does not respond at all. There are times when Ally and I are out at the store and someone will ask about her ear or show curiosity about her ear, but not in the nicest manner. It is days like these that make me wonder what else I can do to help her.
Just like many parents, my husband Brent and I have researched hearing devices and surgical techniques that can help improve Ally’s hearing and offer the option to make her a bigger ear. I talk with families often, having conversations about hearing loss and the issues resulting from hearing loss. They explain to me how it is a challenge to hear conversations in their car unless they keep the windows closed and the radio turned off. Some tell me how difficult it is to hear complete conversations while at the cafeteria table during lunch because of background noise. I have also been told about safety concerns for children and adults when being outside and not being able to hear traffic coming. It saddens me to hear about children with Microtia being bullied just because their ear(s) is a little smaller in size and shape. Knowing this, it would break my heart to think that my Ally could come home from school one day crying because someone teased her about her ear, or to find out that she is struggling in school because she is not hearing everything. These are the situations and examples that weigh on my mind and make me begin thinking more about surgical options.
At times, I become very excited thinking about the possibility of surgery helping Ally. However, I become concerned about the risks and pain involved. Since Ally is only a
child, I worry about subjecting her to the long durations of anesthesia during surgery. What is the best decision for Ally? I do my best, as any parent would, to raise Ally to be herself, be confident and to respect life and those in it. I think to myself that maybe we don’t have to decide on surgery and allow her to be herself just the way she is. When I look at Ally, I see how happy and beautiful she is, and I love her adorable baby ear. Even thinking how surgery can help her, I look at her baby ear and realize I am afraid to change her. Will she look as adorable with two ears as she does now with one? I have cried many times thinking to myself that I do not think I can part with her ear. Ally’s ear is a part of her and her ear is part of what makes her our “sweet little Ally girl.”
I know every parent struggles with the same concerns when researching the best choices and options for their child when it comes to surgery. Some parents may choose a surgical option that allows their child to have surgery at a younger age hoping to prevent teasing and bullying and preventing the memory of any surgical trauma. Some parents may choose to wait for surgery until their child is old enough to be able to make his or her own decision. While some parents will believe that their child will be just fine in life and will not require surgery. They know that regardless of a missing ear(s) that their child will be confident in who they are and be proud of themselves. No matter which of these decisions is made, the decision that you feel is best for you and your child is probably the right one. I believe that no parent or child should ever be criticized for the decisions they make when it comes to these types of surgeries. Especially, when these intentions are only meant for the best.
I do worry if Ally will be happy with what decision is made. Although we are still considering what would be best for her, we are leaning toward surgical options. A friend suggested to me that maybe I should write a letter to Ally telling her why we made the decisions we did for her to read when she is older. I think I will write a letter to Ally once we have decided. For now, I will continue to enjoy watching my beautiful little girl grow up. When I am feeling confused again about our options I will daydream about Ally and what she will be like in the future. I will imagine her sitting on the beach wearing stylish sunglasses because she will have two ears that can hold them up. I will imagine her driving in her car with her friends laughing and carrying on with the windows down, the sun roof open and her radio playing and not missing a beat. I will imagine the beautiful smile on Ally’s face because she loves who she is.