We decided to record our family's experiences as our son, Kai, undergoes surgical procedures to address his hearing loss.We adopted Kai in May 2008 from Hunan Province when he was about 2-1/2 years old. Kai has bilateral microtia/atresia, meaning that his outer ears did not develop properly (microtia literally means "little ear") and there are no ear openings (that's the atresia part). We already knew about his condition and some of the options available for addressing it.
When we brought Kai home in June, our first step was to have his hearing tested. We learned Kai's hearing threshold is about 70dB, so, unaided, he can hear loud machinery (like the vacuum cleaner) but can't hear normal conversation. As a result, Kai had almost no language when most children have enough speech to express basic needs and identify people and objects in their environment.
When we brought Kai home in June, our first step was to have his hearing tested. We learned Kai's hearing threshold is about 70dB, so, unaided, he can hear loud machinery (like the vacuum cleaner) but can't hear normal conversation. As a result, Kai had almost no language when most children have enough speech to express basic needs and identify people and objects in their environment.
Within the first month of bringing Kai home, he was fitted by OHSU with a loaner SoftBand BAHA (which stands for bone-anchored hearing aid, although Kai's is not actually anchored). The device is an amplifier that uses the skull to transmit sound to Kai's middle and inner ears. For Kai, the middle and inner ears seem to work well, so this remarkable device brings Kai's ability to hear close to normal.
In just six months, Kai has moved from a very limited set of sounds (ba, ma, ye, ai) to a spoken vocabulary of a few hundred words and the ability to construct 4-5 word sentences. It is a remarkable device and remarkable progress, but there are limitations. Kai misses soft sounds like shh, sss, hhh so a typical sentence might sound like, "I wan doodos, peeze." When amplified, the sound he hears hits both ears at the same time, so he doesn't really know what direction the sound is coming from. And, it seems the sound from the BAHA is rather flat (background noise and someone speaking to you are hard to distinguish). To the rest of us, the BAHA sounds kind of like AM radio.
After getting the chance to adopt Kai, we learned there were a number of treatment options, including ear canal reconstruction (canalplasty). There are a limited number of doctors out there who will remove the skull bone obstructing the ear and create an ear drum and ear canal using a skin graft. We decided this type of procedure was for us, and fortunately, Kai is a good candidate for this type of repair.
Over the next few years, we'll use this blog to chronicle Kai's surgeries, recoveries, and the resulting changes in his hearing and speech. We'll also share what we learn along the way.
After getting the chance to adopt Kai, we learned there were a number of treatment options, including ear canal reconstruction (canalplasty). There are a limited number of doctors out there who will remove the skull bone obstructing the ear and create an ear drum and ear canal using a skin graft. We decided this type of procedure was for us, and fortunately, Kai is a good candidate for this type of repair.
Over the next few years, we'll use this blog to chronicle Kai's surgeries, recoveries, and the resulting changes in his hearing and speech. We'll also share what we learn along the way.
What a great idea to blog about this - so well written too! Glad to hear that today's surgery went well.
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