Miles' Story!

Most of our friends and family are familiar with Miles' condition, but for those that aren't, I decided to dedicate this very long post just to that.

Miles Emery Antonio was born on February 22, 2006. He was 6 lbs. 4 oz. - 19.5 in. I had a very normal, uneventful pregnancy. I ate well, exercised everyday, and did everything I was told to do. I was probably too cautious. I never drank alcohol or coffee and stayed clear of anything that might have caused problems for the baby. We had several ultrasounds done and took all of the required tests for a woman my age. Everything always came back with the best results and it seemed as though we would be having a healthy, normal baby boy. We elected to have an induced labor, so we could be with our doctor as opposed to the on call doctor. We went in at 5am and my doctor finally arrived at 8:15am to break my water. As soon as she left, the nurse called her back because Miles was on his way. Three pushes and no pain meds later he was born at 9:15am. It was quite a shock for us considering we were told to expect him around dinner time or late afternoon at the earliest. We were confused and almost emotionless to our new delivery. It was like someone walked in the room unexpectedly and said, "Here hold this baby!" and then just left. They said he looked perfectly healthy, stuck a hat on his head, wrapped him in a blanket and handed him to us. As quickly as everyone had come into the room, they all vanished.

Suddenly it was just the three of us. We exchanged looks and smiles and then proceeded to undress and examine our new baby. He was so small and all wrinkly and soft like he had been swimming in the pool too long. We had spent 9 months wondering what he would look like and suddenly he was here, looking like neither one of us. We of course wanted to see what color hair he had, so off came the hat. I was first looking at the right side of his face and noticed his little ear looked folded, I then looked at his left ear and although it more resembled a normal ear, it still looked a little funny. We called the nurse back in and told her there was a problem with his ears. She looked at them and said, "Oh, that's not so bad. Plastic surgery can fix that. The doctor will check him out when they do his newborn screening." Then she left. We still didn't know if he could hear and of course that was our biggest concern. We were later told he had a congenital deformity of the external ear and were referred to a specialist. He failed his newborn hearing test as well and that had us even more worried.

We were referred to an Otologist here in town and while waiting for the appointment, we did Internet research. We found information that was later confirmed at all future appointments. Miles has a condition called Bilateral Microtia with Atresia. Microtia means "little ears" and Atresia is the absence of ear canals. It has very little research associated with it, but what they do know, is that it is not genetic, unless associated with other conditions, and that there was nothing we could have done to prevent it. It occurs around the 4th or 5th week after conception, when most women don't even know they are pregnant, and they don't know why it happens. It is just a random occurrence and could happen to anyone. Since I was exceptionally cautious during my pregnancy none of the environmental theories applied. The condition is very rare and because he has it bilaterally (on both sides) it is even more rare. I believe it is 1 in 60,000 for new births. He had an MRI shortly after he was born that shows the internal hearing structures are intact and a special hearing test that determined he has normal hearing inside his head. Basically, outside of the cosmetic features, he only has a conductive hearing loss, which means the sound has difficulty being conducted into the head, but once it is there he can hear fine. So he needs to be aided to hear normally.

Because he does not have fully formed ears, and lacks ear canals, he can't wear an ear mounted hearing aid. We were lucky enough to have our insurance cover most of the cost for a special aid called a BAHA - bone anchored hearing aid. He wears it on a little elastic headband and the aid can rest on any bone on his head. As it processes sound it vibrates. The vibrating sound is conducted through the skull bone and into the cochlea so he can hear. We have all tried it out and it is an absolutely amazing piece of technology. Sounds are exactly as we hear them, but as though you were in a tunnel or listening to the radio. It was important we aid him as soon as possible so that his speech develops normally. He startles and reacts to sound with it on just like any other infant would, but without it he hears like having your fingers plugging your ears. Because he has been aided since he was 2 months old, he doesn't know any difference and pretty much leaves it alone. Outside of his hearing loss he is a normal 9 month old. He babbles, laughs and cries just like every other baby and is beyond his age in physical development. He took his first steps just a week after his 9 month birthday and has basically been driving us crazy with his extreme determination to be independent and mobile. Our house and possessions are no longer our own.

Miles' Future:
We were lucky enough to find an online support group for kids, parents, and adults with Miles' condition. It has been a life saver. Here people discuss the latest techniques and technology related to surgical procedures and offer advice and support to those just beginning the journey with their newborns. We have decided to choose reconstruction for Miles' Microtia and Atresia and he will undergo the first procedure at the age of three. No doctor will perform surgery until at least this age because the general skull size and inner ear workings aren't large enough to work with. He will have a one stage surgery on each side of his head to open the ear canals, with some minor skin grafting to line the canals, and a three stage surgery to reconstruct the ears. We have also decided to go with an implant for the outer ear structure, instead of his own rib cartilage, to avoid a painful and invasive surgery to harvest the cartilage, which is also an option for those with Microtia. The Atresia surgery usually has a high success rate, but some end up being aided in the end because they still have a small degree of low range hearing loss. But the Microtia repair is very successful, with a natural looking end result.

There is only one qualified, reputable doctor and he is located in California. We have had the luxury of meeting him in Denver recently, when a woman we met through the online support group invited us to her house to meet her son who had reconstruction about 6 months ago. The doctor stopped by on his way to Vail, CO to do a follow up with the 4 year old boy, also named Miles and he agreed to meet some other local parents and kids. He is a wonderfully kind man, who has a great deal of knowledge and confidence in this area of medicine. He pioneered this particular implant technique and is the only person to really trust with it....currently. Our hope is that he doesn't retire within the next 3 years, so that our Miles can benefit from his expertise. Three years is a long time in medicine and technology so who knows what the future will bring, but as of now we are on a path. Whether we stay there will remain to be seen, but in the meantime we have our hands full with a very loving, sometimes challenging and often mobile little boy, whose only roadblocks seem to be the ones we keep having to build in our family room. If there are any questions that we haven't answered please feel free to post and we will do our best to answer them. Please feel free to share this with anyone who may show an interest in Miles condition.