1. The medical name for this condition is unilateral microtia and atresia. Microtia means his outer ear is small and not formed correctly. Atresia means his ear canal is not fully formed. There are varying degrees of this condition. Carter's is right in the middle. Some kids also have smaller facial bones or muscle weakness on the side of their microtia, but he does not. Some kids are born with bilateral microtia. Sometimes microtia is part of a bigger genetic syndrome, but most of the time it is just an isolated condition that children are born with.
Waiting for his turn to see the ENT-
2. We learned last week that Carter's hearing is considered "perfect" in his left ear. In fact, the audiologist could not get over how well he seemed to hear. Her biggest struggle with his hearing test was that he would not stop talking. "What's that?" "Where'd it go." "Mommy, look!" The test that he had done was meant to test his overall hearing based on his visual responses to sound. Which means, that we know his left ear hears perfectly well, and we assume his right ear has hearing loss, but we don't know EXACTLY how well he can hear from the right ear. Because his overall hearing is so good, and his speech is progressing rapidly, we have decided to wait before pursuing more detailed hearing tests like an ABR because those would require him to be sedated. Eventually, he will need to have this done but there is no rush. The big question that we don't have an answer to yet, is how well his inner ear functions. The inner ear is the part of the ear that processes and transmits sounds to the brain. There are AMAZING new hearing devices available that actually bypass the outer ear and middle ear and use the bones in the skull to transmit sound to the inner ear. For children with bilateral microtia/atresia, these special hearing aids can transform their lives from being almost completely deaf, to having near perfect hearing. It is amazing to watch as their devices are turned on for the very first time. If you want to have a warm, fuzzy cry session, go to You-tube and search "hearing for the first time."
So, if Carter hears perfectly well with one ear, why would he ever need one of these hearing devices? The biggest reason would be because he wanted to hear out of both ears. At some point, he is going to get older and will be able to learn and decide for himself what he wants in terms of his ability to hear with both ears. We need two ears to localize sound. Only being able to hear from one ear makes it almost impossible to tell just by listening where a sound is coming from. It is also more difficult to filter sounds in a noisy environment. When he is in school, he will need to sit with his left ear closer to the teacher, etc. We may decide to try one and see how he likes it, but he would have to wear it on a headband (since he doesn't have an outer ear to anchor it on) and I doubt he would keep it on for longer than a few seconds.
3. Ear reconstruction surgery is on the horizon but not until he is 6 or 7. Those will be big decisions- especially what kind of surgery and where to go. There are two different approaches and just a few surgeons in the country who perform these types of surgeries. We are going to take our time and do lots of research before we make any decisions about this. Thankfully, we have time.
Worn out from the long day in Baltimore...
4. Fun fact: if we ever want a modern day success story to give Carter of someone famous who was born with microtia, we can always tell him about Paul Stanley from KISS. Maybe our little music loving baby is destined to be a world famous rock star!
No comments:
Post a Comment