I was born with a moderate hearing loss which was diagnosed when I was 2 year old. The story is, that the health professionals didn’t think I had a hearing loss, but my parents knew better and kept pushing for a diagnosis. Thankfully, these days (in the UK), all babies are screened for a hearing loss within their first few days. This is known as the ‘NHS Newborn Hearing Screening Programme’. If they fail this test, then they are referred to their local audiology department for further tests.
I’ve been blessed to have a support network that many envy, from my family to audiologists and TOD’s to doctors. People have often asked what it’s like to grow up with the BAHA, hearing loss and Treacher Collins Syndrome (TCS), but if I’m honest – it’s a question that’s always stumped me. I’ve never known anything else and in my opinion, I’m the luckiest girl alive!
The most important thing when growing up with a hearing loss is confidence. I despise that C-word. It’s the bain of my life and it’s always something I’ve got to work on. I am not the most extrovert person, quite the contrary most would say. My confidence has grown over the years and these days I can even stand in front of a group of complete strangers at the Ear Foundation when they hold their information days, and talk about my experience of life with the BAHA.
One thing that helped me the most when growing up, was meeting/talking with other people who had a BAHA/TCS. It’s nice to be able to share experiences and exchange useful (sometimes strange) tips! That’s where the internet comes in use, however this wasn’t around in my early years..but it’s better late than never.
There was a stage when I got curious and wanted to know exactly what I had and why, and I think it’s this that sparked my love for science. I needed to know what my Treacher Collins was and how it happened, I’m not an expert, but in a later blog post I will post a little explanation. Of course it’s because of my TCS that I have the BAHA. I searched for hours and hours on the internet and googled BAHA many, many times. One website that stood out to me was the BAHA Users support forum, which has now been taken over by the Ear Foundation. It was a great place to talk to other BAHA users and learn about their experiences, especially when I was having some maintenance issues. It was just nice to know that I wasn’t alone and my issues were ‘normal’.
One thing that a lot of parents worry about is bullying or teasing. I was never bullied or teased about my BAHA, maybe a little bit of teasing because I looked different, but never because of the BAHA. There were a few occasions when kids did ask what that ‘thing was on my head’. but I was happy they asked, and even happier to explain what it was and how it helped me. My friends and class-mates were quite nice and once they got used to me, even started looking out for me. My parents ensured that all teachers were aware of my hearing loss and BAHA so I received all the support that was available to help my learning.
The BAHA never held me back from anything, yes maybe in Physical Education (P.E), I used to take a little extra care to make sure I didn’t get bumped on the head, but I was able to participate fully in everything. Obviously in swimming, I take it off, and if there was an activity that I classed as ‘risky’, then I would take the BAHA off. A certain bump at a particular angle can cause the BAHA to fall off, but thats a good thing and is designed as a protective measure.
If anyone has any particular questions about growing up with the BAHA, then please do leave me a question in the feedback below and I’ll be happy to answer. Thanks for reading, I’ll be back soon.