Hearing loss in children and who can help

August 15, 2019

Do you have a child with hearing loss?

Sarah is a full time GP and mother to two daughters born with hearing loss. She kindly agreed to an interview about her experiences as a parent carer and her voluntary work with HearPeers.


Do you view yourself as a parent or a parent carer?

I’ve always viewed myself more as a parent than a carer, but I know I have to do a lot more with my children than other parents. 

How did you feel after giving birth to Jessica and Penny?

Not sure how to answer this one… Jessica’s birth was 30 hours long, so mostly I was exhausted! Penny was an emergency and she had trouble breathing initially, so after hers I mostly felt relieved.

Was it daunting to have a new baby with additional needs?

With my first, we didn’t know until she was 6 weeks old that she was profoundly deaf. So it was very daunting – I hadn’t even worked out how to be a mum yet, let alone how to deal with a child with a hearing impairment. With my second, because we were expecting her to be deaf, we knew what we were dealing with I think we would have been more surprised if she was a hearing child!

 Who provided you with support at this challenging time?

We had a lot of support from friends, family, and our church. The audiology department at our hospital were also great and managed to get all the referrals to the necessary health professionals done really quickly. We also found a lot of information from the National Deaf Children’s Society, and our local Surrey Deaf Children’s Society.

What decisions did you make to help Jessica and Penny?

The biggest one was the decision for them to have cochlear implants. As a parent all you ever want for your child is for them to have the best opportunity for them to be able to choose how to live their life. We are a hearing family, and whilst we would never want to take away their deafness, we want them to have access to sound and the chance to develop good speech. Cochlear implants don’t guarantee this, but we wanted them to have the operation whilst they were too young to remember. When they’re older, if they don’t want to be part of the hearing world, they can choose not to have their implant anymore and we will support them in whatever decision they make. 

How did you get involved in the HearPeers programme and can you tell us more about it?

Going through the whirlwind of emotions of diagnosis, through to assessment for implantation, the operation itself and the subsequent intense therapy meant I had a lot of questions myself. Whilst the implant centre was brilliant, I would have felt an extra bit of reassurance had I spoken with someone going through the same process as me. The implant centre was approached by med-el that they were looking for volunteers, who then passed on the details to myself. It sounded like an ideal opportunity for me to help support another family who might have questions about the process. The HearPeers programme has a number of volunteers who are either parents to a child with cochlear implants, or actually have cochlear implants / bone-anchored hearing aids. We attend events to raise awareness of what having cochlear implants entails, and we are available to answer questions about the process. There are a range of volunteers with different backgrounds and experiences, so there should be a volunteer for most situations people might find themselves in.

What would you say to a parent who has a child with additional needs?

Celebrate your child’s differences – because if we were all the same, life would be very boring!

The HearPeers Mentor Programme is a community of hearing implant users and their family members, who are dedicated to supporting individuals going through similar experiences.

By: Carers Club

Source: https://www.carersclub.org/2017/09/hearing-loss-in-children-and-who-can-help/

Dave Nassaney
Dave Nassaney

Join Dave Nassaney, The Caregiver's Caregiver, author of numerous articles and books, speaker, life coach, and radio talk-show host for caregivers who are burned out, but his most important role is being a caregiver to his lovely wife, Charlene.

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