#Hearinglosshour: Hobbies, Activities and Hearing Loss
August 9, 2016
How to Talk to People with Hearing Loss
August 10, 2016Q&A: What you should know about my child’s cochlear implant
I get stopped at least once a day by people passing by in the supermarket or other mums at the playground asking me what my son, Harry, is wearing on his head.
I don’t mind talking about his cochlear implants, and it doesn’t bother me in the slightest having to explain that the technology on his head helps him to hear! In fact, I am fiercely proud of him and his “magic ears.” But sometimes I get the feeling that people want to ask things but perhaps they don’t, for fear of seeming nosy or rude. So, I decided to ask some of my social media followers if they had any burning questions about my child’s cochlear implant, so I could answer them all in one place.
I had some really good questions about cochlear implants, and I hope I have answered them well!
Q: How did you feel when you first found out Harry was deaf? Were you confident that there was help available that would help him potentially hear? -- The London Mum
A: I won’t lie, we felt absolutely devastated when we found out Harry was deaf. I almost went through a type of grieving process until I realized that life could be so much worse and that there was light at the end of the tunnel. At first, our goal was to give him the ability to hear, but we quickly realized it was going to be a very long process so we tried to just get on with normal life and enjoy our little first born for who he was.
Q: Why is Harry deaf? – Lily
A: Currently, we actually don’t know a medical reason why Harry is deaf. When he was born, Harry underwent a few tests to check for CMV virus or any other infections that can potentially cause hearing loss, but those were negative. He wasn’t premature and I had no issues during pregnancy. My partner and I have had no genetic testing as of yet, but its something we are going to look into in the future. There is a gene that both or one of us could carry that could potentially be the cause of Harry’s deafness, but we aren’t in a hurry to find out right now.
Q: What would your advice be to any parent who is in the position of making the decision to go through with the cochlear implant procedure? – Along Came Jay
I am completely bias because our experience with the cochlear implant has been so wonderful, so of course I would advise them to go ahead with the procedure. However, you do have to seriously consider every other option and avenue first. I wrote a post not so long ago about how we came to our decision, you can read it here.
Q: How long did Harry’s surgery take and what was he like when he came round? -- Claudia
Harry’s surgery took 6 hours, which was relatively good as it can take up to 8 hours for both ears to be operated on. Of course, it was the worst day of our lives knowing our baby was going to be put to sleep and cut open, but we made the decision for a good reason.
Q: How does the cochlear implant headpiece stay on Harry’s head?! -- Simon
I am asked this question so many times as sometimes it is really hard to work out if you don’t know!! During his operation the surgeon attaches magnets to the skull, and the other side of the magnet is in the headpiece. So they are really easy to put on and take off.
This video explains how an Advanced Bionics cochlear implant works:
Q: Did it take Harry some time to get used to his cochlear implants being there? Was he tempted to pull them off? -- @mrsjwest
Do you know what, Harry was an absolute angel from Day 1 wearing his cochlear implants! He never pulled them off, rarely touched them and just let them be! They fell off quite a bit when he was still little because they use a magnet that isn’t very stront, to protect the soft skin on babies heads. However, they stay on really well now he’s older and the magnet strength has been increased.
Q: Is it getting harder now he Harry more active and aware to keep them on? – @stephxrobinson
Like I answered above, the headpieces actually fell off more when he was younger, but now they only fall off if he is really actively being “rough and tumble”! If they do fall off, he now puts them back on by himself, which is really nice to see!
Q: What can Harry actually hear? Can he hear the birds in the trees for example? – @jamesdknott
This is a very good question because we know he can hear things like birds in trees and even people talking in another room, but in terms of what it sounds like to Harry, we don’t actually know. Because Harry has never heard “naturally” before he doesn’t know what a bird should sound like, so he couldn’t tell me if it sounds different to what I hear. I found a really good article here that gives examples of what things sound like to a cochlear implant user, but of course it could be very different for everyone.
Q: How much is Harry’s speech impacted through his hearing loss? -- @bethfisher97
Harry’s speech is actually not far behind a typical two-year-old! His pronunciation isn’t so good when he learns a new word (like any toddler) but he is getting better every day! His understanding is perfect though and he understands pretty much everything you say to him or ask him to do. We aren’t pushy at all when it comes to speaking, but we do encourage him to say things. We find being quite relaxed about it and letting it come naturally has worked for us so far. I have written a post about a few speech and listening games we like to play, you can find it here.
Q: What do you tell other children when they ask about Harry’s implants? -- @kayleecakees
Harry often gets some funny looks from other children, normally the older ones, as his little buddies don’t give him a second glance! I tell the other children that they are Harry’s magic ears that help him to hear because when he was born he couldn’t hear anything. Most kids accept that and get on with playing with him and some reply to say “oh that’s really cool!” I try to be really positive and open about his implants so that he grows up being confident wearing them.
Q: Did you have a choice of implant manufacturers and if so, why did you choose Advanced Bionics? -- @laurapeles
We did have a choice. We picked Advanced Bionics over the other two manufacturers mainly because it had a fully waterproof option and because the processor didn’t sit behind the ear. We felt that Harry would be better at his age without an ear piece and it just seemed to fit us as a family. Technology-wise, you can discuss with your audiologist about the differences, but for us it was really all about what fit our lifestyle.
Q: Will he get different cochlear implants when he is older, like the ones that go behind the ear? – @stephxrobinson
Harry will get an upgrade in a few years’ and it will really depend on what products are available. He will also be at an age where he might want to choose his device himself! It is likely that he will switch to an over-the-ear type device, but it really depends on what suits him and us at that stage.
Q: What has been the biggest surprise about Harry having cochlear implants? -- @laurapeles
The biggest surprise would be how quickly he started to respond and pick up speech. Harry was saying “Mama” just 10 weeks after his activation date and I really wasn’t expecting those results so soon. I didn’t think he would be able to hear as much as he can either, he hears very quiet noises that I don’t even pick up sometimes!
Q: How do you deal with the looks and comments from people in public? – @nikk_h82
We have been really lucky and have never had a really bad negative experience from strangers looking or making comments about his implants. Most of the time people come up to me and ask me what they are and how they work, which I really like! Asking about them is so much better than staring and not knowing what they are for. For me, it is all about raising awareness and educating those that don’t know!
I think if I do get any negative comments or looks I would probably shrug it off. At the end of the day, his cochlear implants have been a miracle for our son. As long as he is happy and healthy then nothing else matters.
Q: How has life changed for you as a mum since Harry received his cochlear implants? -- Along Came Jay
Life changed completely as soon as Harry received his cochlear implants. He suddenly was able to hear and it quickly became easier to communicate with him and to soothe him when he was upset. At first it took a while to adapt to managing his equipment and get used to him having little microphones attached to his head, but we got in the swing of things and it wasn’t too difficult. I can’t imagine life without his cochlear implants now. It really is like a miracle!
I would love to do another Q&A style post again, please let me know if you have any questions about my child’s cochlear implants in the comment section below!
