When J.R. was born, it was a very stressful and confusing time with doctors everywhere and asking all types of questions that I did not have the answers to. The doctors at the hospital had not seen this before. We went through genetic counseling and tried to figure out what happened while I was pregnant with J.R. but there was no answer. The geneticist just said, "Sometimes things just happen." Although I may be hard on myself to this day, there was nothing I did to cause this. So we just went along with our lives and the Children's Hospital of Kansas City had become our second home for a year, going to the many doctor's appointments every few weeks; all while driving the 5 hour round-trip drive from Wichita, KS. Finally, the Air Force gave us the opportunity to move to a base that had a children's hospital within an hour's drive, much better than 5 hours.
So fast forward to moving to New Jersey and being seen at Children's Hospital of Philadelphia (CHOP). With my research, I realized CHOP was great! CHOP had won many awards and I talked to many people that had great experiences there. So we started seeing an audiologist, whom I adore. She told us about a Bone Anchored Hearing Aid (BAHA) that J.R. could wear on a softband and it would help him hear. My husband and I were thrilled and could not wait to try this out. First, we were able to use a BAHA as a loan while we went through our insurance to try to get it covered. Then we were fortunate enough that our insurance did, in fact, cover the BAHA and an accessory called the mini mic.
Fast forward to age 3. J.R. has been doing wonderful with his BAHA and wears it every day after a few years of fighting to have him keep it on. It is now just an everyday thing he wears. J.R. is currently in a preschool classroom at his daycare that has about 12 kids. His teacher wears the mini mic that allows her to talk into it and it goes directly into the BAHA. However, there are limitations. When J.R. is in the classroom, there cannot be any background music playing because it can distract and keep J.R. from hearing what is going on in the classroom. At circle time, J.R. has to sit in a certain position where the teacher is to the left of him, so he can hear her out of his left ear. Although he has these limitations, J.R. loves and excels in school. However, next year he will be going to a new school and with more kids, which means more limitations and obstacles to jump through. My biggest fear is J.R. being bullied or not be able to make new friends because of his ear. Kids these days are harsh.
That brings us to our next adventure. Surgery. A few months ago J.R. was looking in the mirror in the bathroom and he says, "Mommy, when will I have an ear like the other one. This ear (pointing to the little ear) is my bad ear." Tears started coming to my eyes. I knew this moment was coming, I just didn't think it was going to be so soon. First, I asked who said he had a bad ear, because we never said that. Second, I told him that when he is a little older we can go to the doctor to have his little ear made to be big like the left one. My heart was broken and I knew I needed to start going harder on my research to find answers about the ear reconstruction for Microtia ears. We saw a plastic surgeon in KC that didn't give us much information on what to expect for surgery for his ear. Then, when we moved to NJ we saw two more surgeons. One surgeon did not even do the type of surgery needed for his ear and the other was more of a general surgeon who would not even give us a number of surgeries he has done like J.R. The only information we knew was that he studying with a doctor in CA in 2015, where he learned about Microtia.
I am part of a support group for Microtia Atresia, called Ear Community and on there I learned about a doctor in California, named Dr. Sheryl Lewin. She has been doing Microtia surgeries for 12 years and counting. And through those 12 years, she has developed and perfected her work. Today, she has designed her own type of material that she puts under the skin flap when she does the surgery and it is custom to every patient. She calls it the "Lewin Ear." The surgery is called Porous Implant Ear Reconstruction (PIER). It is a customized porous polyethylene implant that is designed and carved to match the patient's normal ear during the operation.
Most of the time this is a one-step surgery, but because J.R. has a higher grade Microtia, his will be a two-step. One surgery to start the main frame of the ear and the other will be six months later to finish and perfect the ear. Dr. Lewin's work is amazing and I was able to meet some of her patients in person and you could not tell a difference between the normal ear and the Microtia ear after the surgery.
J.R. will need another surgery down the road when he turns 5, which will be to implant his BAHA which will allow him to wear the BAHA through an abutment without the softband, meaning better hearing. But, right now the focus is to get the outer ear reconstruction completed. One step at a time.
Thank you for reading J.R.'s story. I hope that my story allows other parents of Microtia kids to know that they are not alone in this adventure we call life. And if they need anything they can reach out to those who have walked in their shoes.