Members area

Loading...

Register

Don't have a login?

Join us

Become a member

  • Connect with others through events, workshops, campaigns and our NEW online forum, Your Community
  • Discover information and insights in our resource hub and receive the latest updates via email
  • Access one-to-one support and tailored services which help reduce barriers for deaf children
Menu Open mobile desktop menu

Our experience of Auditory Brainstem Implant surgery

Published Date: 08 Oct 2020

Girl in hospital bed with toys next to mum and daughter

Well I think it’s safe to say the year 2020 has been memorable. No matter which way you think about it, you will always remember this year. It’s the year that has brought a global pandemic, stopped people going to work, stopped hospitals from running certain services, stopped children going to school - the most fun you could have was finding things to do indoors. Now what about adding an operation into the mix? An awfully long operation at that, but one that was going to hopefully help my little Lex to hear something. Surgeries aren’t the nicest of things to go through, and most of you reading this blog will know that when you see your child being taken to be put to sleep you’re an emotional wreck – I know I am.

I got the phone call that Alexa will be allowed to have her Auditory Brainstem Implant at the beginning of this year, but of course the pandemic happened and it was paused and we were told to wait until things had calmed down and the services were back up and running. This was fine, there was nothing I could do. However, I then got a phone call in July that Alexa would be having the operation done in August, but there where new rules. I’m not going to lie, I panicked wondering if it was safe to go ahead.

Now, here come the rules! Bear in mind, all hospitals are different so I’m going by the rules at the one that we were admitted to.

Woman in hospital wearing mask.

  1. You must isolate for 14 days prior to admission, that includes the whole household even if they’re working.
  2. You’re to come in at least 24 hours before surgery to be tested for COVID-19 (patient only).
  3. Only one parent can attend – and no visitors!
  4. Masks are to be worn from the minute you’re inside and hand sanitiser will be your only companion around the hospital.
  5. When you go home, there are no rules, do whatever you want!

During our hospital stay, it was safe to say I was quite lonely. Alexa was in intensive care for two nights after her surgery, so I was left by myself. I think that’s when I had time to reflect on how hard this journey was going to be. My social life that week was only talking to friends and family on the phone, or nurses and doctors in the hospital. If I’m honest without talking to all those people, I’d have struggled even more.

Discharge day came, and I was out of that hospital as quick as anything. I was able to see the outside world again! Lex was able to see her daddy! Even though we still have a long way to go and memories become a blur, I will always remember the year of 2020 – the year of COVID-19, the year of Alexa’s surgery, and hopefully the year Alexa will hear something for the first time!

I will keep you all updated on her journey!

Kayleigh

Kayleigh lives with her partner Kia and their two daughters Brooke (7) and Alexa (2). She is currently studying part-time with the Open University doing Criminology and Forensic Psychology as well as being a full-time carer to Alexa. Alexa, who has microtia and atresia, is bilaterally profoundly deaf and currently wears one cochlear implant. She’ll soon be having an auditory brainstem implant fitted due to the cochlear implant not being successful. They’re all learning British Sign Language and supporting each other through Alexa’s journey.