Anna's Story (Microtia/Atresia)

Posted on 09/04/2014

Adopt Special Needs: Family StoriesThe special need listed on Anna's medicals from China were Otocleisis and Rickets. The Otocleisis ended up being Microtia/Atresia and the rickets were non-existent. Anna's microtia, or "little ear" as Anna likes to call it, is the least of our worries. Anna definitely knows that she has one little ear and one big ear, but at this point it doesn't really affect our daily life. Occasionally we will have other children ask, "What happened to her ear?" and I will just calmly explain that that is the way she was born. Her burns were also quite noticeable when we first came home, and we used to get lots of comments and questions about them as well. Now they have faded and are not much of an issue.

Microtia/atresia is often listed as one of the minor needs in the adoption community. In Anna's case it ended up being part of a larger syndrome. Anna has greatly malformed inner ears and is essentially deaf. In the last 15 months she has had eight surgical procedures. But being Anna's mother has been my greatest joy. She has faced so much in her short time and is still so happy and loving. She is such an amazing little girl.

We have to do some things a bit differently than other families. Because Anna can not get her cochlear implant wet, we have to manage our time by the weather. If it even looks slightly stormy outside I'm more reluctant to take her someplace outside for fear of bad weather. I have to make sure that when I speak to Anna she is facing me. Even with the implant she still needs to be able to see my lips as a kind of confirmation of what she is hearing. I tend to hover a bit when we are in a play situations with friends because Anna's conversational skills are still lacking. Her articulation is still way behind, and she can be difficult at times for even me to understand (although her language has progressed so much in the last year). Certain activities like swimming or going to the beach in the summer are really difficult for Anna.

Anna has a compromised sense of balance. Sports are really not in our future. She can run around with her friends on the playground at her current school, but I'm not sure how that will work once she is mainstreamed. Plastic slides on playgrounds have the ability to wipe out the programming on her cochlear implant so I'm not sure how recess/gym time will work for her. Anna currently attends an oral school for deaf and hard of hearing children, but I hope to have her mainstreamed by first grade. She will probably always need to be in the front row of classrooms even with the implant on. Her teachers will need to be more aware when they teach of facing the students and speaking clearly. That said I expect that Anna will excel in school.

If you adopt a child that is deaf or hard of hearing, educate yourself on the modes of education. Not all deaf children are best served in a class with sign language or a total communication class. I think parents need to be aware that while microtia/atresia can be a minor special need, it also can be a very involved, time-consuming one. Educate yourself on all the syndromes that can be connected with a special need. You never think your child will be the one to get the complications, but it does happen.

Adopt Special Needs: Family Stories