In this episode, I talk to Kate Llewellyn-Waters, a businesswoman who has lost her hearing after getting pregnant. She opens up and shares her own story on how that happened, why it happened, her on-going challenges as a mother and shares advice to any other parents going through something similar.
Part of the reason why I do this podcast is to hear from different people’s experiences and perspectives, and this one is something that I didn’t know that could happen; being deaf because of pregnancy.
You can listen to the podcast interview below, or you can read the transripts by scrolling down:
Announcer: This is The Hear Me Out! [CC] Podcast, a place to hear stories from the d/Deaf and hard of hearing people, and from your host, Ahmed Khalifa.
Ahmed: This is a very interesting interview with Kate Llewellyn-Waters, where we talk about her experience on how she literally lost her hearing when she became pregnant.
And it’s a story that I never thought it was possible, and as soon as I heard about it, I reached out to Kate and I wanted just for her to share her story and how it happened, and she shared her journey and her fear and the barriers, and everything that goes through her mind as a mother, as well.
Very, very interesting. I hope it’s something that you can just learn from as well.
And thankfully we made it work just by having some technical problems and also our respective hearing issues. We made it work, but we couldn’t hear each other so with the help of technology, we typed it out, and I spoke, she spoke, we made it work.
So if you having any problem with hearing it, or you want to get the flow of it better by reading it, transcript, as always, is available within the show note, you can access the transcript.
So let’s get straight into the interview with Kate Llewellyn Waters.
Ahmed: Kate, it’s great to have you here on the show. I really, really appreciate it and I believe that you’ve got a very, very interesting story about the topic of deafness and pregnancy and giving birth and having babies, and how that has made you deaf, literally.
So can you tell me the story of how did that happen to you?
Kate: So it was in 2013 when I was pregnant with my first child, my daughter Beatrix, that I noticed that my hearing wasn’t as good as it used to be.
And I kept needing subtitles on the television, and I was speaking louder than I usually would, and my husband noticed that my hearing wasn’t as it used to be.
So it was in 2013, I went to an audiologist, and I was in my second trimester, and the audiologist said that I did have hearing loss and to wait to see after the pregnancy, to see how bad it actually got.
So I went about three weeks after my daughter was born, to the audiologist. I had a hearing test and I was found to have 60% hearing loss, sensorineural hearing loss and also conductive hearing loss.
And then several years later, in another audiologist test, somebody suggested that it may be otosclerosis and it hadn’t been suggested to me initially, it took two to three visits from audiologists, and different audiologists, for them to determine, based on my symptoms, that it was otosclerosis as well as sensorineural loss as well.
Ahmed: That’s interesting. So then, what is the different between the two? For those who are lay people, what is the difference, and just to explain more about how does it affect you as well?
Kate: So conductive hearing loss and otosclerosis is in the low frequency ranges for me, and otosclerosis is when you’ve got abnormal growth of bone in your ear.
Sensorineural is more genetic based, and it’s also got the hereditary components, which is quite interesting because my grandma in her first pregnancy with my father 72 years ago, was actually diagnosed with complete deafness, and she had a operation to reverse it.
But there wasn’t a link until I spoke to this audiologist who determined that otosclerosis was probably the issue with my hearing loss in the conductive and the lower frequency range.
But then in the high frequency, so that’s hearing high pitched voices, like females and sirens, et cetera, that’s where I have the sensorineural loss.
So there’s two different hearing losses, because I’ve got both, it’s termed “mixed hearing loss”.
Ahmed: I know the feeling because I have hearing loss to high frequency sounds, and I don’t hear … as they say, female voices, it’s a bit more difficult. Sirens, certain things and the old the mobile phone, I used to struggle a lot. So I know how you feel about that.
So what does that mean for you day-to-day life? How has your life changed then?
Kate: Day-to-day life has definitely changed. It’s been a big learning curve and I’ll never take anything for granted again. Because when you lose one of your senses, it’s a complete shock and it takes a long time to adapt to the different changes.
Especially because I’ve got children and I’m always concerned that they may not hear me, so I have alarms around the house so I can always see the alarm flashing up if they’re crying et cetera, or if they need me.
And I had a bit of a scary episode a few months ago. We were at school pickup and we went across the road, and there was a blind spot and a big bend, I couldn’t have seen that car coming, nobody could have.
But had I been wearing a hearing aid at that point, I would have heard it coming.
So that was the wake up call I needed to actually accept that I needed a hearing aid and start wearing one, because I’ve had lots fitted and I really struggled having young children, with the noises and the outbursts.
You can’t anticipate when a child’s going to have an outburst, and a toddler tantrum, and for me that was the reason I didn’t start wearing hearing aids straight away.
I tried them but I couldn’t turn them down. You have to have them at one level, so it’s only in the last few months I started wearing a hearing aid. Up to that point, I was lip-reading, so it was really tough.
I excluded myself quite a lot from social settings. I dreaded being in restaurants. I dreaded being somewhere loud.
Also, even with my work talking to people, I would only want one-on-one, talking to groups absolutely petrified me because of lots of background noise.
So it hasn’t affected me hugely but I’m adapting really well. But I never had anxiety before my hearing loss, but I definitely do have some form of anxiety now, as I’m adapting to life with hearing aids.
And also sometimes you never know if the hearing aids going to stop working if you’re going into an important meeting, or I’ve just had a pitch this morning for example, it’s a worry if it’ll just suddenly stopped working. I won’t be able to hear and what the people are saying, especially if we don’t have Skype or something, where I can actually see them and lip read.
So there is a feeling of anxiety now, but one that I recognise and I can deal with, but it has taken a long time to adapt, and also for people to become patient with me.
They’ve taken for granted that I could hear as I have, but now they’ve got to be more patient, and it’s just educating people around me who’ve known me with normal hearing, and now hearing loss to understand that I’m not the person that I was. So cultivating patience is definitely key.
Ahmed: I can understand what you’re saying. And that [inaudible 00:07:36] is a thing. I have those feelings about going to restaurants and conferences and businesses. I totally understand what you’re saying, because it’s scary and it’s not something that you can get used to easily.
But, I’m a late comer in to trying to accept it, and to trying to accept what I’m hearing it, but even still today, I am still trying to get used to it.
So what does that mean? Do you think as a mother, how has that changed you? And do you think you have to adapt differently to other mothers as well?
Kate: As a mother, it has made things a lot more difficult. I’m a lot more on edge. I worry about the children, especially when there’s traffic or other people around.
In playgrounds I worry if they’re a distance from me, in case I can’t hear them if they get into trouble.
When they’re outside, I need to be outside. And when they’re upstairs playing, I need to be upstairs.
So it’s a lot more stressful completely, having hearing loss and having children, and adapting. And sometimes I forget that I’ve got hearing loss.
So I do have to take the monitors around me, so they flash up if my children go into a different room, I can’t follow them every minute of the day. So it has made things a lot more difficult, but it’s something that I’m definitely learning to adapt to.
Ahmed: So does that mean that you have to talk about deaf awareness in your house?
Because this is something that I talk about in businesses, in workplace and that kind of environment, but did you have to teach your children at a young stage, about deaf awareness?
Kate: Yes. We spoke a lot at home about deaf awareness, different levels of deafness, and different conditions caused by deafness.
I explained to my children how children can be born deaf, or they can be [inaudible 00:09:39] deaf during childhood, or like me, it can come on through pregnancy or at any point in adulthood is premature hearing loss, and most likely a lot of the elderly people we know, may have a degree of hearing loss.
Kate: So we have talked about deaf awareness and how to respond to people who have hearing loss and who can be deaf. And my daughter’s actually started learning sign language, which is fantastic.
So yeah, we were doing that and actually really cultivating on the deaf awareness in them so young, so they can explain to their friends in school about deaf awareness and how to speak and relate to people who do have hearing loss of some kind.
And my children react to that by being really positive and realising they’re learning about something they didn’t know, and because there’s a genetic component, my daughter may also get it in pregnancy.
So she’s five right now, but knowing this now and having the knowledge that I didn’t have when I went into my pregnancy, but actually if I got pregnant I could have otosclerosis like my grandma, and result in hearing loss.
Now that happened to me, and I’m hoping it doesn’t happen to my daughter, but there is a definite genetic link, which my audiologist said is about a 50% chance.
I’ve got two sisters. Neither of them suffered hearing loss in pregnancy, so it was just me who did have that genetic variant. But teaching my children about this, and the fact that it could happen to my daughter, it’s making them really aware, and also to really look after their hearing as they get older.
So [inaudible 00:11:22] et cetera, where I know some people who’ve lost their hearing by being surrounded by loud noises over a long time, that’s made them more aware that they can’t stand next to a speaker, and their hearing could get infected, and it’s so important to really appreciate your hearing health.
It does worry me that my daughter may have otosclerosis at some point, and there is a risk you can go completely deaf.
So I’ve had two children, and my hearing has worsened in each pregnancy, and my audiologist has said that if I have a third child, I most likely would go deaf.
And teaching my daughter that this is a risk and I don’t want her to worry at the age of five, that she could get this.
But by talking to her about my experience, it’s making her more aware that it could happen potentially, but she doesn’t think about, “Oh, when I’m old and I have a baby will I get this?”
But it’s something we’ll definitely talk about when she gets older, and have when she’s in her high teenage years.
I’m sure we’ll start talking about it more, as she goes into her 20’s et cetera.
And by then I’m hoping otosclerosis is a lot more awareness around it, and sensorineural hearing loss, prematurely.
So if it does happen to my daughter, that it’s dealt with really quickly and she gets a hearing aid and learns to enjoy wearing that hearing aid to get the benefits they can provide.
Ahmed: It’s quite impressive that you’re advocating forward and hidden it, because I have struggled for many years and I still don’t get used to it. I’m not huge fan of how it feels but I can understand why it’s beneficial.
Did you find it difficult? Do you find it annoying? I mean you require it, you need it, but how are you finding wearing it, and how are your children reacting to seeing you wear it as well?
Kate: It’s taken me four goes of actually trying to wear a hearing aid until I found the one for me.
And that’s simply because I’ve got a wonderful audiologist who has been on a journey with me, and all your audiologists basically set it at a 100% straight away.
And that’s what I really struggled with.
This audiologist, my new one, actually said, “No, let’s go in at 80% and then we build over a month.”
And I think that is the main reason I’m wearing it still today, because I’ve got used to it gradually, and whereas all of the other audiologists said, “Wear it every day, all day, every day.”
This audiologist hasn’t. He said, “Wear it first hour, then take it out. Next day, two hours, three hours, build up.”
And that works really well. And actually by the third day, I was wearing it full time.
My daughter loves it. She’s been looking at pimping my hearing aid. So there’s lots of things you can do to make it look snazzy.
But all the audiologists I’ve ever seen actually said, “Oh, here’s one. This is really discreet. It’ll go with your hair.”
And I just thought, “Well, what message is that sending out? Why should I be hiding it?”
You know, for children growing up with hearing loss, what does that say to them? I [inaudible 00:14:39] to be embarrassed of your hearing aids and I really feel that there’s a stigma around hearing aids and hearing loss.
And I think if you’re wearing one, wear it with pride, it’s helping you to live a much fuller life.
Kate: And there’s so many reports and studies that showing that people who could benefit with wearing a hearing aid, don’t actually wear one.
And it leads to social anxiety, exclusion, mental health issues. So having one if something to be really proud of.
So that’s something I feel very strongly about, is promoting hearing aid awareness and hearing loss, and getting people speak about it. When people wear glasses, there’s no stigma to that.
But there seems to be with hearing aids, it’s almost like people think this person is stupid or old, but that’s not true. It can happen to anybody, of any background. So that’s something I’m really conscious that I do want to work towards and help.
Ahmed: I’m impressed because I was like that. I always wanted to hide it, and it’s taken me so long to accept it. And you know, sometimes I think could I make it more obvious so that people are more aware of it.
Each to their own, everyone has their own preference of style and colour, and I admire that a lot because that’s something that it took me a long time to get over, and even sometime today I’m still trying to get over it. But you’re right, why is this stigma? It just makes a lot of sense at all.
In terms of your mother, you’re also a business woman. So does it affect you in your day to day life as a business owner as well? And how did it affect you and how do you get around it?
Kate: When it comes to work, I enjoy meeting people face to face. I rather go into a face to face pitch or meeting any day. When you’re dealing with people on the phone, it’s not ideal. You might mishear, even with hearing aids you may mishear a couple of words and not have to ask them to repeat, which is not ideal.
If I have a Skype presentation, great, because I can lip read, but being in person, as a deaf person, really really helps with the atmosphere. It just makes you feel more comfortable.
So I definitely prefer being in a physical meeting with someone, especially when it comes to pitching and you need the extra confidence, you’ve got the extra pressure on you anyway.
So I always try and orchestrate a face to face meeting no matter what, unless obviously it’s in the States, then it’s a bit trickier. But really as a business owner, the colleagues I work with, are aware of my hearing impairment.
They’re also very understanding, and I’m quite conscious as well of building a community, a work community, where we embrace people with hearing loss.
So I’m always open, for example, to students, PhD students, other students who want to get experience with us and they may have some kind of hearing loss or impairment, of them approaching us and working with us in a capacity that they feel comfortable, because I know it makes you more anxious.
You’re not sure how your work colleagues will adapt. So that’s something I’m quite conscious to promote as well.
So as a business owner, it doesn’t affect me so that I can’t do the job. But I’m also very conscious when I go into meetings or meeting somebody for the first time who doesn’t know about my hearing, I am more anxious than usual. I’m quite a laid back person, competent.
But it is sometimes a struggle when I’m meeting somebody first time and I’m not sure how they’ll react if I’m asking them to repeat things or speak more slowly.
And then often they see my hearing aid and that their speech will change then as they see it, and actually it’ll change.
So they’re slightly louder, slightly slow on their speaking. But I haven’t met anybody negative in my business world and my job as a business person. So that’s one positive to take from it.
Ahmed: That’s good to hear. I think I can appreciate, as myself, I run my own business and when you meet someone new, you don’t know how they react.
So I can understand it’s quite nerve wracking about that situation, especially if it’s in an environment that is not suitable for you, like in noisy environment. So it’s great that you got around that as well, and a lot to learn from that. A lot to learn and how to be more deaf aware as well.
Technology is a big part of it. But at the end of the day, being face to face and being in person meetings, that’s always the best thing to do, it’s not always possible, but if it is possible, it’s always the best thing to do, which is really really cool.
So then, you know, that’s just a bit of a touch about your business, and I wanted to get to run things that with your feelings as a mother who has gone through this, what advice do you have for other mothers who are going through the same thing, or have gone through the same journey as well as you have?
Kate: For other mothers who may be going through what I’ve gone through or maybe even noticing some form of hearing loss during their pregnancy or just after pregnancy, I would say straight away go and see an audiologist.
Book in with someone, even if it takes you a few goes to find the right person for you, get your hearing tested, see what level of hearing loss it is, and then learn to adapt to a hearing aid as quickly as possible.
Because my life before a hearing aid or pre hearing aid, is a lot different now. I’m a lot happier, I’m a lot more confident, I’m a lot more sociable, and for my children to see me embracing my hearing aids, is inspirational.
So I think you just have to be really accepting of what’s happening. It is a shock and it’s scary, but it’s having the right support network around you, and having people understand what’s going on, and including somebody close to you on your journey, taking them with you to the audiologist is really helpful, so they can understand hearing aids, they can understand an issue with your hearing. I think it’s hugely helpful.
Ahmed: That’s good to hear. I agree with you. I think trying to diagnose it as early as possible, to make sure that you treat it … not treated early, but just make sure that you have an idea of what’s going on early, so that you can adapt and just kind of start a new life again, but not necessarily throw away your old life, it’s what you said, you adapt to it.
So it makes a lot of sense what you said to do that. Just to get it checked, get it diagnosed, and then find out what to do next. We should all make a lot of sense as well.
And I do appreciate you sharing your journey, your story, and it’s amazing that this happened, because even for me, I don’t think about it. So just to finish things off, I want to thank you for your time, and I really thank you for sharing your story.
If anyone wants to connect with you online, where is the best place for them to do that?
Kate: Aw, thank you. Well I’ve enjoyed speaking to you as well and sharing my story and yeah, if anybody wants to connect with me, please do.
My website is www.katelwaters.com, or also if you want to come through by our work website, it’s DNA Plan. So it’s www.dnaplan.health.
And you can contact me through their contact page, and I look forward to speaking with them.
Ahmed: That’s good. Thank you very much for sharing that. And I’ll make sure I put that in the show notes. You can access it and hopefully you can connect with Kate.
And again, Kate, thank you for your time, thank you for that.
Kate: Thank you very much, Ive really enjoyed it.
Ahmed: Thank you Kate for appearing on the podcast and thank you for your patience as well, for overcoming the technical issue that we had to face, but we made it work, which is so awesome.
And if you have enjoyed listening to this story, and reading it, make sure you check out Kate, contact her if you have similar issues, the journey or barrier, and just reach out to her, she’s there to help you out as well.
And I hope you enjoyed the story. I hope you learned something from it.
And if you have, I will appreciate it if you can leave a review on whatever platform that you’re using, just leave a review, it’s also be awesome to raise the deaf awareness, as well.
In the meantime, I will speak to you soon.
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