In Birmingham CHARGE Syndrome is not a new condition, but in Montgomery, there isn't anyone else I know who has a young child diagnosed, so treatment here is where I teach the doctors about my child. When we were first sent to Dr. Wooley to talk to him about the Cochlear implant and to drill through bone blocking her nostrils so she could breathe through her nose, we didn't have to explain anything. He has treated several children with the syndrome. He listened to us and scheduled her for surgery immediately. Everyone at the outpatient facility was understanding and worked with us to make her as comfortable as possible. She was kept over night for observation and was scheduled for an MRI the next day to determine the exact structure of the bones in her ears. When we came back to have the tubes removed from her nose, he took the time to explain what it meant for her not to have the semicircular bones in her inner ears. He stated that she will walk one day, it will just take her longer to get her "sea legs" under her. I still use his quote to explain to people why my 3 year is not walking. I was informed today by our local ENT that she will have to have a surgery in a few years to repair her deviated septum. I know without a doubt where we will go for that surgery and if Halyn ever has to be hospitalized, I will insist she be sent to Children's. I am not a doctor and I do not want to have to teach someone about her condition when time is of the essence; I want the best!
Children's has been a source of strength and knowledge for us in learning everything we can about our angel's syndrome; from the Speech and Hearing clinic to the ophthalmologist who suggested we see the genetics who diagnosed her. For more information about Halyn's syndrome, please check out www.chargesyndrome.org.