Jesse's story is about microtia/atresia and bone conduction hearing aids.
We were very excited by the arrival of our first child, Jesse. The pregnancy was uneventful, so we were rather surprised when the doctor expressed concern about his ears just minutes after he was born. It turned out he had bilateral microtia (underdeveloped outer ears) and atresia (no ear canals). We later learned he had a permanent conductive hearing loss, with hearing levels in the severe to moderate range in both ears.
We had never met anyone with microtia or atresia before, but I did have some background in working with kids who were hard of hearing, so I have to say my initial reaction was not very typical – I was quite excited! I guess I figured this was a challenge we could handle, and I was eager to get started.
Jesse was fitted with a bone conduction hearing aid when he was 2 months old. We had to get quite creative in finding ways to keep it on, and to keep him from spitting up all over it. It also took a little while to accept the look of it – I remember having an internal argument over whether or not to take it off for his three-month-old photos. We ended up leaving it on, and eventually, it just became a part of him that we didn’t even notice.
Although it was initially upsetting for both sets of grandparents, they were very supportive. We also found it helpful to meet other parents. I attended a “baby group” for families with young deaf and hard of hearing children, which I looked forward to every week. One week there was a panel of deaf and hard of hearing teenagers. That was the first time I met a teenager who was hard of hearing. I knew plenty of older adults who wore hearing aids, mostly due to noise-induced hearing loss, but I had not met anyone who had grown up hard of hearing. I had this huge sense of relief. I didn’t need to know that my child would turn out exactly like that teenager – it just helped to have a real-life image, and it gave me a sense that Jesse would be OK.
We worked with some fabulous professionals over the years, who encouraged us to be active members of the team. We were always very involved, in everything from intervention sessions and assessments to setting goals and evaluating Jesse’s progress to attending workshops and social events. We made a point of providing Jesse with opportunities to meet other hard of hearing kids, so he wouldn’t feel like he was the only one.
Fast-forward 17 years – Jesse is now in grade twelve, and has been accepted into university for this coming fall. He is a fabulous musician, he loves physics and calculus, and he is amazingly patient and open when explaining about his hearing to others. I met one of his high school teachers the other day, and the first thing she told me was how impressed she was by the friendly, undemanding way Jesse first introduced himself to her and told her about his hearing loss and listening needs. That was a very proud moment for me, because we have always felt that was such an important goal – for our son to be comfortable in his own skin, and willing to let others know what they can do to accommodate his needs.