How roleplay helped our daughter understand cochlear implants

When M passed her newborn hearing screening, we were elated. Not that we would have a problem if she was Deaf, but being profoundly Deaf/hard of hearing (HoH) ourselves, we knew the emotional, mental, and societal barriers she would face. We also had other more pressing challenges to confront as she was fighting for her life in NICU. So, we breathed a sigh of relief that we didn’t have the challenges of being Deaf to face too.

What we didn’t expect was that M’s hearing would progressively deteriorate over the next 16 months. She was very good at fooling us. We swear she would turn to sounds we made, and she started to babble. She was also learning British Sign Language from her father, so professionals assumed she was adapting this language as it was ‘easier’ than talking.

During an auditory brainstem response (ABR) test in October 2022, when she was 16 months old, she was diagnosed with severe bilateral sensorineural permanent hearing loss.

We had objective conversations before M was even a twinkle in her dad’s eye. We knew there was a possibility that our child/ren could be Deaf as my husband was born profoundly Deaf and diagnosed at 18 months old. As an audiologist, I spent many hours showing him research, procedures and so on that I had learnt on my degree course several years beforehand.

Now, though, when we had to decide whether M should have cochlear implants, it felt very different because emotions were involved. The decision was not one we made lightly, and I don’t envy any parent who has to agonise over what to do. We knew she didn’t need ‘fixing’, and an implant is far from that. It doesn’t restore natural hearing, but we did want her to have options in the future, and we knew we could stop the process at any time.

The assessment process was lengthy and tiring. We spent many miles, hours, traveling to and from the ‘local’ cochlear implant centre. M was a superstar navigating all of this. The most stressful time, I think any parent would agree, was surgery day. Especially as M was ill the day before her first arranged surgery, so we had the heartache of it being postponed and gearing ourselves up mentally for a second time.

M was also implanted a little later, just before she was 3, so she was more understanding of what the day involved. We read some relevant and helpful books, such as the National Deaf Children's Society's Chloe Gets Cochlear Implants and Phonak's 'Leo Gets Hearing Aids’, as well as more general hospital-themed stories. We found M didn’t really understand too much. The visuals helped, but they needed to be more literal.

This is where roleplay came in helpful. We acted as doctors and nurses, bandaging ours and her dolly Rosie's head. Rosie was named after the NICU who looked after M as a newborn.

On Valentine’s Day 2024, surgery went ahead, and even though the procedure was 3 hours in total, it felt like a lifetime. I couldn’t eat, I didn’t want to be too far away. I just wanted her back safely in my arms. All sorts of unwanted thoughts entered our heads. What if something goes wrong? We have signed the consent form… have we made the right decision?

When we got home (the same day), Rosie doll had her head bandaged too. We took the bandage off Rosie first the next day. It revealed stitches (red thread sewn on), and then it was M’s turn. She wanted to see her own scars, so we took a photo.

After a few weeks, M had a check-up and, again, Rosie doll's scars were healing well, so we removed her scars/stitches.

On ‘Activation/Switch On’ Day, we really wanted to celebrate it as a milestone, something we and M and could look back on in years to come.

Nannie made her a special pink sweatshirt adorning the phrase, ‘Hip hip hooray today is Activation Day.’ She was excited to go to the hospital. The actual appointment was very long and underwhelming. Along with traveling time, it was an exhausting 6 hours.

M didn’t have much of a reaction. It’s not like you see on the YouTube videos, where suddenly she heard and smiled, far from it. It was very triggering and overstimulating for us as parents. I had to turn my hearing aids off as they were making a lot of noise to ensure she was comfortable. This was just ‘switch on’. There was a very long journey of rehabilitation ahead.

She came out of the clinic proud as punch, with a big ‘Cochlear’ koala bear wearing matching implants. She showed them off like they were accessories.

When she arrived home, she was surprised by the most enormous home-baked decorated celebratory cake (made by, you guessed it, Nannie). And Rosie doll, who had been along the whole process with her—bandaged, stitched up/scarred—now had received her matching cochlear implants too.

There’s not a lot out there in terms of representative toys like this, so being a crafty family, we improvised. Rosie doll still comes in handy when M requires some gentle encouragement to wear her implants.

M is such a girly girl, and I have found many more creative ways to accessorise her implants with adorning stickers, headbands and bows. They have even been decorated with Christmas decorations recently too. This keeps M interested in wearing them, but we also have so many lovely comments from passers-by which causes a discussion and spreading Deaf awareness. Tasha Ghouri, from Strictly Come Dancing, who had a lovely sparkly cochlear implant each week, even shared this on her social media page.

We have continued to celebrate the small wins during the past 9 months and will have another big momentous occasion to celebrate as we approach a year after ‘switch on’ in March 2025.

M has even inspired her father to have implantation. He has also been through the process this year and was activated on none other than 5 November. He unfortunately did not get a sweatshirt, cake, or doll. He did, however, get fireworks!