Jake's Story - Dubbo NSW
Jake came into the world as a healthy little baby but was very quickly affected by very common respiratory health problems, which resulted in many nights and weeks here and there, mostly in his first 12 months, in hospital. He had severe asthma, couldn't feed and had to be put onto ventilators and drips.
What added to his poor health was the ever present ear health problem. He had multiple episodes of severe ear infections that required constant ear mopping (removing the pus). By nine months he was presenting as a baby that was significantly hearing impaired. By 12 months he had experienced over 12 episodes of burst ear drums.
As we already had a deaf daughter Haylee, this was a huge concern to us.
Hearing tests showed he had a 60 dB loss. Was it glue ear or was it like Haylee’s loss, which is permanent?
As it turned out, it was glue ear and we had it rectified with grommets at the Westmead Children's Hospital. While under sedation, Jake had further testing to rule out permanent hearing loss. So with grommets in and a now happy hearing baby all was set to be ok for his speech and language development etc.
To cut a long story short he had issues for the next three years or more. More grommets as his first set came out with further infections. Everything came at once. Every time there was an asthma attack, on came the ear infections. Perforation after perforation. He had bad sleep patterns and played up. Antibiotic scripts piled up as did the expense of them and little seemed to work until a major diet change made some difference.
Our paediatrician asked about smokers in Jake's environment. This hit hard with his dad as he was a smoker and as it turned out every consoling cuddle he gave him to help him settle with his restlessness and poor sleeping habits actually made him worse as the chemicals in clothes just brought on further inflammation to his eustachian tubes causing further middle ear reactions.
Cessation of smoking, especially around Jake and not exposing him to any clothing or areas of secondary smoke had to have helped too.
Eventually by school age, most of his ear health and asthma problems had pretty much settled. There was still the occasional ear infection but we were always straight onto them and didn't take any chances of them becoming worse.
Being aware of the symptoms and acting quickly is the key to preventing ear health causing a hearing loss.
As parents who have experienced two distinctly difference forms of hearing issues, it is concerning that in his day and age we have so many children who have to wait for specialist treatment and/or a simple hearing test, or are dismissed by the GP without education provided to the parents about simple prevention strategies such as diet, nose blowing, knowing of allergies etc.
If you're concerned about your kids, be assertive and get them checked out. If you're still concerned, just keep onto it.
Jake is 16 now and although we were in a position to go private, travel and get things moving and went to greater measures to check his hearing as his circumstances were not your everyday ones, if we'd waited 5 more months for a test, or 18 more months for his grommets (which is the state of our local services) his access to speech, language and education would have been compromised.
Hear our Heart Ear Bus project is just as much about the education, awareness and prevention strategies as it is diagnosing and treating ear health issues. There is no point treating a health issue if we don't understand it which includes importantly, how it may be prevented.
In many ways the pathway for treatment (although not as fine tuned as it is these days with new born testing) for our child with permanent hearing loss was so much more straight forward than it was for Jake. Yes, we were devastated to learn that she had a permanent hearing loss, but support was at our door step immediately after her diagnosis. This is far from the case for these kids with otitis media. Many children go for months and even years without diagnosis and or treatment. It really is a hidden disability!! Actually it's not considered a disability though. It's just the most common health issue in children, grommet operations are the most common operations in Australia. The common factor here is fine if it's monitored. The problem, though is that the wait lists, expense, and lack of awareness actually make it a greater long term issue for some of the kids than if they were permanently Deaf, as they simply don't get any support if they're lagging at school. Mental health, juvenile incarceration, as well as the more common wagging, bullying, learning problems, unemployment and welfare are all proven factors linked to ear health.
Let's stop mucking around with this and do something worthwhile for our kids.