Freddie passed his neonatal hearing test, but by 18 months it was clear that his hearing was not good. He was diagnosed with glue ear and moderate hearing loss of about 30 dB. Our initial advice was to wait until the summer when hopefully the better weather would clear the problem. Unfortunately, as is common in children with Downs Syndrome, come the summer, there was no improvement.
Mum Annabel talks about Freddie’s Baha
As Freddie's hearing loss was described as moderate, I wasn't too concerned and was happy to wait and see what would happen.
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The first solution suggested was grommets, however we had to wait until 2000, when he was nearly 3 before his ear canals had grown big enough to put the grommets in. These were great initially, but the effects only lasted a month or so when presumably they either fell out or got blocked with glue. We tried a second set of grommets in 2001.
Behind the ear aids
The next suggestion was traditional behind the ear aids. Unfortunately, Freddie has particularly small floppy ears and despite trying half moulds, head bands, pretty colours etc, Freddie never tolerated them. There was constant feedback and on the few occasions that he didn't pull them out, they just flopped out. As an indication of how unsuccessfull they were, I can't find a single photo of him wearing them!
Softband bone conduction aid
By the age of 6 we were getting increasingly concerned about his lack of speech. Most children with Downs Syndrome do speak and his speech was dragging further and further behind the rest of his development. By this time he was getting 30 to 50 dB loss in hearing tests and it stood to reason that this level of loss coupled with learning difficulty was going to cause problems. Fortunately, just before Christmas I read a report about bone conduction aids in the Downs Syndrome Association journal. At his next test, I asked about them and his audiologist pulled one out of her drawer. She put it on and his face lit up - and he wouldn't give it back!
Aliceband style bone conduction aid
Despite the success of the softband, it had a habit of pinging off so we changed to an aliceband style one a few months later.
Towards the end of the year I read some articles about the BAHA and learnt that although the aliceband aid was helping him, the sound he heard was distorted by passing through his hair, skin and tissues before it got to his skull.
Unfortunately although the Baha is implanted in many hospitals around the world, and in the UK, they don't do them at the Children's hospital in Bristol where we live.
In 2006, a year after he first started using the softband, we asked for and got a referral to Birmingham Childrens' hospital. Following an assessment in August 2006 he was approved as suitable for surgery and they recommended bilateral aids. The first stage surgery was carried out in April 2007 and the second stage in October. He started using the hearing aids the same month.
One side has healed up perfectly and he's been wearing the aid from the moment he wakes up until he goes to bed since the day he got them. The other side has caused more problems with a small bleed after surgery and a somewhat persistent infection in the skin graft which we have been trying to resolve for the last month. In November they did a small operation to remove some dissolvable stitches and we are hoping that solves the problem. As he had the aids bilaterally, he's been able to carry on wearing one which is all he would have had up until a few years ago.
Not withstanding the infection problem the aids have been amazing. The effect on his speech has been dramatic; he has gone from being virtually non verbal to an understandable vocabulary of over 100 words. His articulation is improving all the time (we can finally understand him!) and his concentration is far better. He loves wearing them and asks for them if they've had to be removed for a bath etc.
If anyone reading this has any questions, please do write to me annabel@tall.org.uk or join the BAHA forum on the BAHA user support group website - www.baha-users-support.com.
