It’s a fair question.

I had two comments come in recently on older posts regarding the medical path we chose for Girl Child. Here is one:

My name is Chelly, I am 46 now and when I was little they didn’t really have a name for this. All my life I just thought I was deformed. I had MANY MANY surgeries like this little girl and others only to have many infections and and an ear that was worse than before my parents started this whole thing. Who is the urgery for anyway!!!! Are the parents embarrassed or feel bad that their beautiful child was born like this and want to correct it. Well IT CAN’T be corrected by mutilating surgery!!!!! It is harmful to the shild in every possible way mentally and physically. About 5 years ago I saw a man on television named Robet Barron and I looked him up on the internet and called him. He called me back personally and I flew to Washington to meet with him. He fitted me with a prosthetic ear and I have never felt more complete and happier than I have about my ear in my whole life.!!!!!!! I got my hair cut in a very short pixie style. I have been wanting to do this my whole life 

And here is the other:

Why put her through this!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! My parents did the SAME thing to me when I was little!! Always infections, always operations, always missing school and being a kid, always other kids saying things, always feeling bad about myself. When I was finally an adult I contacted Mr. Robert Barron( I happened to see him on television) I never thought I would get in touch with him. Next thing you know I am on a plane to Washington and he fitted me with a prosthetic ear. In 46 years… I have never been more happy. I can do anything, go anywhere, wear my hair anyway I want to. NO ONE knows or can tell that my ear is prosthetic!!! Please parents… look into this option. At least let the child be a child and let them decide when they get older if they want to do the surgery. The surgery WILL NEVER give you an ear that looks normal and isn’t that the goal!!I would love to talk to anyone that has questions.

I want to respond.

When my husband and I were looking into what choices we may have for our daughter, the options were: 1) Do nothing. 2) A prosthetic such as the one provided to the commenter by a prosthetist like Robert Barron. 3) A rib graft surgery. This is likely what the commenter had done as a child. or 4) A Medpor implant.

When she was six weeks old, her then-doctor prescribed a CT Scan for her, where upon we learned that she had most of the anatomy necessary to hear on her right ear. We were excited by this prospect because of the opportunity it could provide for her to hear the world in “stereo.”

We decided that because her ability to hear out of both sides of her ear was important and possible, we decided against one and two. When we learned what was involved in number three, we both felt strongly that it was too invasive. Please note: there have been successful rib graft reconstructions for many years. We felt that it wasn’t the right solution for our child. We weren’t aware of any other options at that time.

When our daughter was two, I stumbled on the Yahoo message board, and learned of our fourth option: the Medpor implant. We decided that this was what felt like the right choice for her, for a variety of reasons, not the least of which was the fact that it was less invasive than the rib graft option.

Shortly after her first surgery, she called to me while she was watching TV in a hotel room on our way home  and said, “Mommy! Mommy! I can hear! I can hear on this side!” my heart soared. The road has not been smooth, to be certain, but we have a happy, healthy, thriving nine year old daughter, whose life and quality of it means everything to us. That’s why we “did this to her.”

And for the other things implied in the comments like, “Who is the surgery for anyway?”

I am not embarrassed in any way, shape or form by my daughter or her birth defect. I never have been, and I never will be. I feel absolutely no shame at all that my child was born without an ear. We’ve never hidden her ear. We’ve never treated her like she needed to be “fixed” to ease our discomfort. To imply otherwise, as in comment number one, is supremely insulting to me and my husband.

We have never treated her like she is deformed. We have never told her she is deformed. She doesn’t see herself as deformed. She is smart, wise beyond her years, knows her own strength, and knows she is a whole person both before AND after her surgeries. The surgeries were for her to hear and have an ear that works.

As for the comment, “It is harmful to the child physically and emotionally.”

Here is our daughter today:

I asked her recently, “if you could change something about yourself, what would it be?”

She said, “I want my room to be purple.”

“You don’t want your ear to be different?”

“No, because I like who I am and I wouldn’t be who I am without my ear and hearing stuff.”

Does that sound like an emotionally damaged child to you?

There are more ways to manage Atresia/Microtia than a prosthetic. There are complications with each method that are as individual as the person undergoing the treatment, INCLUDING the prosthetic approach.

I realize that because I’ve chosen to share our experiences with the world, I should therefore be prepared for criticism as to how we approached taking care of our daughter. I do, however, have the right to address said criticism accordingly, as I am doing here.

Girl Child, as I state on my Atresia/Microtia page, is perfectly perfect just as she is, was, and has always been, with or without an ear. Fear, doubt, uncertainty, and yes, grief, were all part of our early parenting experience. However, I would not go back and do anything different.

Here is her “mutilated” ear today:

If you are a parent whose child was born with the particular birth defect, please don’t automatically assume that surgery will “mutilate” your child. You have choices, research them carefully, and decide what is best for your child based on what you find out. It may not be the same path that we chose for our child, and that’s fine. I would caution you, though, not to berate parents for choosing a different path. How does that help further understanding? It doesn’t. I’m happy that this commenter, after years of pain, found the answer for her. We found the right course of action for our daughter.

Related Posts Plugin for WordPress, Blogger...
Share on FacebookTweet about this on TwitterPin on PinterestEmail this to someoneShare on LinkedIn