Our First Step of Thomas' Journey

Thomas at 2 weeks

    I've been waiting anxiously to blog about Thomas' journey that truly began when he was born but I wanted to wait until we had fully taken the first step. Thomas was born with Stage III Unilateral Microtia and Atresia in his right ear. Microtia means his outer ear was not fully developed and Atresia is the term for the type of conductive hearing loss he has due to his Microtia.
   We found out about Thomas' condition as soon as I gave birth.  He had a meeting with a specialist and audiologist about a month later at Dell where he was given a test to monitor his Brain Stem Responses to hearing and they determined that he has a mild-moderate loss in his right ear and probably has close to 60-70% of his hearing. They also confirmed that his cochlea and auditory nerve are both fine and in tact. The way they explained his hearing to us was that if he had his eyes closed he could not tell you in which direction noise was coming from and if he had background noise he could possibly not be able to distinguish a single person's voice out of it. Microtia affects 1 in 8,000 births and has been linked to genetics. It is simply when the outer ear does not form completely and takes place in the first stages of pregnancy. Often times it does not mean that someone had Microtia in your family it could have been simply hearing loss or skin tags. However, in our case, luckily, someone does. Marco's brother Joe has a slightly more severe case of Microtia and Atresia in his left ear. We are so grateful for him because their family had this condition before and can answer many questions I had and because if Thomas has questions later he will have him to turn to on a personal level. It was something we didn't realize was genetic because no one in their family had a case of it before. But especially because of Joe were not overwhelmed by the diagnosis or condition.

Thomas' Hearing new sounds

   Thomas' first step in his journey is a hearing aid. They advocate for this because of the language and social benefits they have been proven for children in studies over the past 25 years. Although it was once thought that children with one working ear would be fine, these studies have shown that those children often detached themselves from social interactions and lagged in their language skills due to their unique types of hearing loss. That often times they were overwhelmed by too much noise or not being able to differentiate specific voices from the background noise so they avoided those situations. The type of hearing aid needed for his type of Microtia is a Bone Anchored Hearing Aid where an outer source mimics the vibrations an ear drum would receive and transmits these to a bone in the skull to create the conductive hearing. In adults these aids are attached to an anchor that is drilled in the skull as a base. In children under the age of 5 they are attached to a soft headband. This is what we got today. He has done great this morning wearing it. These are his first pictures in it.

Rocking this Hearing Aid

   His next step will be the medpor surgery when he is 4-6. There is some great information on it if you are interested from the doctor we are most interested in at the bottom. We contacted them to get basic information and discovered she can do all pre-op meetings via skype so that the only time you are with her is for the actual surgery which is wonderful for us since she is in California. This step is still years away but we are preparing as much as we can till then.
   For now we are anxiously awaiting our other stylish headbands from BAHA Headbands (https://www.facebook.com/BahaHeadband) and discovering new sounds all around us. I told Marco, if Lebron can rock the headband so can Thomas!! He promptly started calling our son LeJuan James. Let's hope that ends quickly lol!! So excited to share Thomas' journey with you all! Thank you in advance for all the support and love I know we will receive :)

facts about microtia


medpor surgery info