Saturday, August 2, 2008

The journey thus far... - part 1

Our journey began on Tuesday 13th June 2006, with the birth of Jarrah. The day after he was born, he was taken off for a hearing screen, part of the Healthy Hearing programme now in all Qld hospitals. Babies have their hearing tested down to 35db (very soft), and the result is either a Pass or a Refer. Pass of course means they reached the 35db threshold, while Refer means they did not. A Refer result does not automatically mean they have a hearing loss, but it means they need to be tested again later, in case they are still congested from the birth.

Jarrah's test result was Refer. The midwives do everything they can to assure you that this doesn't mean there's definitely a problem, so we weren't too worried at first. He was tested again when he was 3 days old, and again the test result was Refer. We were then sent to the Audiology dept for more in-depth testing (an ABR = Auditory Brainstem Response), which revealed that at that point he could hear down to 40db in his left ear and down to 60db in his right ear. Again, because they are so tiny at 3 days old, a final decision is not always able to be made at that time, so we went back again 4 weeks later to repeat the test.

In July 2006, at the 4-wk-old test, Jarrah's ABR results were better, 30db in the left ear and 40db in the right ear, so we were hopeful that this whole thing was just congestion and fluid from being small and having just been born, so we setup another appointment for 6 weeks later (age 10 weeks) to repeat the test again and hopefully by then get a clear and passing result. Unfortunately, the results of this ABR in August 2006 were in fact worse than the July 2006 results, suggesting that there was something slightly odd going on. It was decided that we should consult Jarrah's paediatrician when we next saw him (age 4 months) and take his advice on how to proceed.

In October 2006 we saw Jarrah's paediatrician, who was happy with his development on the whole, with the only question mark being over his hearing. It was decided that we should give him some more time to grow, and re-test early in 2007. By February 2007, Audiology thought Jarrah might be old enough for a different type of test, a VROA (Visual Reinforcement Orientation Audiogram??), which involves the child responding to puppets and lights rather than being asleep, so that was attempted in late February but was not successful, with the Audiologists at the time deciding that he wasn't quite ready. Another ABR was scheduled for early March, and we had our first taste of the unpleasant-ness that comes with sedating children.

Through this whole process, I had noticed at home that Jarrah was a highly visual child, and seemed able to focus for quite long periods of time on visual things, like books. He also seemed to respond to sounds sometimes, but also seemed quite capable of ignoring them if he was busy looking at something. I wondered if this had something to do with his poor performance in that first VROA, but, not being an audiologist or expert in child development, had no evidence to support my theory. I still wonder that to this day, i guess only time will tell.

The ABR in early March 2007 gave the clearest results of any test so far, and i really felt like we were getting somewhere. They weren't great results, but we were beginning to get a feeling for what was really happening. At this test, Jarrah returned 50db in both ears, considered a moderate loss, which is the level of soft conversation...not perfect, but not as bad as it could have been. It was unclear as to whether this loss was all sensorineural (in the inner ear, or cochlear, and therefore a permanent loss) or a mixture of sensorineural and conductive (in the middle ear, and therefore a temporary loss, and treatable). It was decided that we should consult an ENT specialist (Ear, Nose & Throat), and then Jarrah's paediatrician to discuss the findings of the ENT and decide on a course of action.

Unfortunately the ENT we saw at this time, April 2007, was rather unhelpful. He did actually look in Jarrah's ears, but didn't give us a whole lot of information at the time, other than (paraphrased): "His ears look fine, he's got a hearing loss, deal with it." Our paediatrician decided to adopt this laid-back approach and suggested we wait another few months before re-testing. Another VROA was attempted in September 2007, but when Jarrah didn't respond at all to sounds as loud as 85db (they were hurting my ears, and he was sitting closer!), the audiologists became quite alarmed. They suspected a large middle-ear role in the problem at this point, and again recommended we see an ENT specialist.

After our previous experience i wasn't particularly keen to re-visit the ENT, so i talked to friends and got some recommendations for a new ENT specialist. We happened upon an ENT who has been exceptionally helpful and decisive, and obviously knows what he's on about. Fortunately he was not terribly busy at the time we first contacted him, so we were able to get an appointment the next day (!), about which i was very pleased. He took one look in Jarrah's ears and immediately diagnosed Glue Ear in both ears, which is a condition where fluid builds up in the middle ear (behind the ear drum) and goes sticky and gluey, preventing the ear drum from moving and sound from getting through, hence the term Glue Ear. Treatment for Glue Ear is the insertion of grommets (and removal of fluid present at the time), which we were able to do the following week. Yet another experience of the unpleasant-ness of sedating young children...


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