Our Visit to Children's Hospital in Denver

We got up early Friday morning to head up to Denver to meet with the Hearing Clinic at the Bill Daniels Center at the Denver's new Children's Hospital. It was Luca's big day, or at least that is how I felt. Today my husband, Sergio and I would talk with the ENT, audiologist, speech therapist, parent liaison, and the genetic counselor. Today we would decide if Luca needed hearing aids.

I had a feeling that they would recommend hearing aids, even though 2 previous audiologist had ruled them out for the time being. In fact, I already had an appointment in Colorado Springs scheduled on Nov. 27th for getting the molds made for the hearing aids. But you could always hope they would tell us, he's great, no worries, he hears just fine.

The new hospital is truly a great place, the colors, the people, everything and it inspires a sense of trust with the medical personal.

First, we met with the ENT and she said the CT scan that they did the week before look fine. Good. Next, the speech therapist and parent liaison came in and talked with us. The speech therapist had a lot of insight in how bilingual children develop their language and we sort of got side tracked talking about that. The parent liaison was a woman who was profoundly deaf and had cohlear implants and used hearing aids and was there to answer any questions we had regarding hard of hearing people. She was amazing, she was able to follow our conversation and interact and talk with us. Then, in came the audiologist and she asked us if we had any questions.

"Does Luca need hearing aids?" and "How will his speech develop?"

She said that with a mild hearing loss (click on here if you'd like to hear how Luca hears, mild hearing loss, or how a person with moderate hearing loss hears) it is recommended that Luca get hearing aids. With hearing aids, Luca's hearing will be bumped up to normal. That is great. He will hear everything and develop speech normally. Luca will most likely have to have hearing aids for the rest of his life.

In our conversations with the Hearing Clinic, we found out that Colorado is actually a super progressive state when it comes to early intervention on infants and toddlers hard of hearing. They were surprised when I told them our insurance covers 90% of the cost of hearing aids (roughly $2000 for each ear). They told us that this amazing researcher, Cristina (I need to find her last name) at University of CU in Boulder has been very involved in promoting early intervention on children diagnosis with hearing loss. Early intervention includes getting every child tested for hearing when they are born, and if there is a detection of a hearing loss, connecting them with CHIP, who provids assistance and resource to optimize the child's communicative development.

Yes, we were lucky to be here in Colorado and to be surrounded by such a supportive team. I have read online about other families and their hard-of-hearing babies and I know the difficulties they have had getting appointments scheduled and proper care for their little ones.

Next came the genetic component. They drew blood on Luca last Tuesday to test for connexin 26 gene, which is one of the most common recessive gene associated with hearing lost. I guess 1 in 30 people are carriers of the gene, although the may not express it, that is, that do not have a hearing loss. If Luca tests positive, it means Sergio and I are both carriers. Although Sophie does not have a hearing loss, she may still be a carrier of the gene. If we were to have another child, there would be a 25% chance that they would have a hearing loss, perhaps like Luca. My gut instinct tells me connexin 26 gene is at th root of Luca's hearing loss, but we'll see when we get the results back in a couple weeks.