Heartbeats and Hearing: Roux Makes Her Entrance
By Dessie Berry
I live with my husband, Dan and daughter Roux in Littleton, Colorado. At ten days of age, Roux was admitted to the Pediatric Intensive Care Unit (PICU) due to a heart condition called Supraventricular Tachycardia, or SVT. Basically this means that her heart was beating three times as fast as it should have been and only came under control with medication. I think we must have missed the hearing screening at birth, but in the PICU that Roux “failed” her initial newborn hearing screening.
After being told “don’t worry about it… this happens to newborns all the time” by the tech who performed the screening, we followed up with a pediatric audiologist. Rouz was officially identified with mild-moderate bilateral sensorineural hearing loss. At two months of age, Roux was fitted with hearing aids, which she now calls her “super ears.”
Our first year with Roux was filled with visits not only to the audiologist, but to the cardiologist as well. This was in addition to her weekly home visits from her Colorado Home Intervention Program (CHIP) facilitator, a physical therapist to help with some gross motor issues, and a sign language teacher. In addition, Dan works overseas for six months out of the year, so I was the primary caretaker during this challenging time. There was so much to learn and it was a confusing and overwhelming period.
Through it all, Roux has thrived and become a healthy and feisty two-and-a-half-year-old. She is doing as well as, if not better, than her hearing peers in most areas of child development. We attribute her success to all the wonderful assistance we have received since Roux’s diagnoses.
Progressive Hearing Loss
Like 30% or so of children with hearing loss, Roux’s hearing changed over time to a moderate hearing loss level. No one can be certain if that hearing level will remain stable. We are committed to doing anything and everything to make sure Roux receives all the help that she needs.
It can be a challenge to cope with “the news” especially if a parent has no prior exposure to the Deaf/hard of hearing world.
I have met incredible people on my own journey who showed me that there is a huge network of support available to help families like ours. This made a world of difference for us. I can think of no more rewarding pursuit than to share what I have learned with other families–with the hope of having the same impact on their lives.
Dessie Berry was a former Denver Metro Guide and is now serving the Maryland/DC Chapter of Hands & Voices.