A Heart to Heart

The more families and adult individuals that I speak with, I realize how difficult it is to make decisions about our little ears. I am not just talking about making the decision to have reconstructive surgery, or to opt for a prosthetic ear, or to keep your beautiful little ears. I am talking about influences that may come from family and friends making it even more difficult to make a decision, the decision that “you” want. Below are some examples of what to think about the next time you openly discuss or share your opinions with a friend, child, or relative who has Microtia, Atresia, Hemifacial Microtia, Treacher Collins, and Goldenhar Syndrome:

To the Families Who Are Considering Medpor or Rib Graft Ear Reconstructive Surgery…

Take a moment to think about the mother and father of the child who has Microtia and Atresia, Hemifacial Microsomia, Treacher Collins, or Goldenhar Syndrome. Although, the parents may want to have Medpor reconstructive surgery as an example, the Grand parents or in-laws may have a difference in opinion and believe that Rib Graft is the better option. Try not to argue over these two options and cause family fights. The parents are stressed out enough and feeling guilty as it is. I have been told too many times where families get in horrible arguments over who believes who’s decision is best for the child or adult. Some of these arguments never end up being being resolved. Please realize that the parents are only trying to do what they believe is the very best for their own child. Sure, you can discuss it and talk about each others likes and dislikes, but please don’t ruin relationships over this. Some family members may even feel very strongly against surgery in general and that the child or adult should keep his/her little ear because that is who the child is. I have heard of relatives and friends turning their backs on our loved ones who have Microtia and Atresia because they are considering surgery. Please, be supportive, if you can. Keep in mind that the ear that belongs to that individual is that individual’s ear…not Grandma’s or Grandpa’s, or Mom’s or Dad’s. If the individual is old enough, he/she should be able to do what he/she wishes to do with their own ear. If there is a child involved, I know there can be some very heated conversations over whether or not Mom and Dad should make the decision for the child or to wait until the child is old enough to make his/her own decision. Just know, that if the parents choose to make the decision to have surgery for their child at a younger age, that that decision is only what they believe will be best for “their” child. It is a decision coming from their hearts. So, try and understand everyone’s feelings that are involved. Many times, family members do not realize what the child, adult or parents are going through, emotionally.

To the Families Who Are Considering Craniofacial Reconstructive Surgery…

For children and adults who have Treacher Collins and Hemifacial Microsomia, often times there can be many surgeries that need to take place before the parents, children, or the adults themselves are satisfied with the surgical outcome. Sometimes, 20 or 30 surgeries or more may be needed to achieve what is desired. Again, these decisions are only coming from the parent’s hearts or what that individual would like most in order to be happier in life or to live a life that is easier than the life they are living now. It takes a lot of strength, love, tears, bravery, and thought to be willing to even consider going through so many surgeries. If you are a friend or a relative or even the parents to the child or adult who is under going these surgeries, please imagine what they are going through in order to be happy. Maybe remember or realize what they have already gone through, maybe being bullied or teased or not getting the jobs they wished they could have had in life or to just simply fit in to society. Please try and be happy for them and support them in any way that you can. Be their friend, their grand parent, their cousin, sibling or their parent and be by their side, the whole way through. It won’t be easy, but try. I know you have probably been there right by their side all along, but just find a way to keep being there for them through all of the surgeries needed.

To the Families Who Are Affected by Religious and Ethnic Beliefs That Point to Blame…

I have spoken with many families where either their ethnicity or religious beliefs cause disputes, even divorces because of pointing the finger at who is to blame for causing Microtia and Atresia. Again, I would like to remind the mothers that you did nothing wrong during your pregnancies if you focused on being healthy. For the mothers who have been blamed for “causing” their children to have Microtia and Atresia and more, my hearts go out to you. Please be strong and remind yourself that you did nothing wrong during your pregnancy. If your husband or your husband’s side of the family believe that “this” is “your” fault, please know that this is not true. Same for the family members on your side who believe you did something to cause Microtia and Atresia and that you did not take care of the baby during your pregnancy. There are not enough studies with evidence showing us that Microtia is something that can be caused by not taking care of yourself during pregnancy, eating something that you should not have, or something that came from the environment. There is also not enough evidence showing us that Microtia and Atresia are completely hereditary, which is beyond anyone’s control. For all you know, something happened on the father’s side of DNA that caused Microtia and Atresia to occur in your child. We just don’t know. Most of all, please love your babies no matter what for they did nothing wrong. They are beautiful innocent little beings. Be so very proud of them and give them the happiest lives you can. If you must cover their ears because you feel you have to due to religious beliefs or ethnic background or that it is best for your child, then do so, but please make sure your child knows it is because of your religion or your ethnic beliefs within the public or that you are just trying to protect them. Please don’t show them shame or let realize that they should not be accepted because of their ears. Before you know it, your child’s personality and character will shine through and you’ll be so proud of him/her regardless of having only one ear, having a crooked smile or missing both ears. Everyone is beautiful and it is unfortunate that our religious believes or ethnic background can get in the way of such beauty. Especially, when dealing with a cruel public that already exists.