PARENT’S PERSPECTIVE

Max first came to GOSH when he was just a few months old, after doctors discovered he was profoundly deaf. Mum Giulia tells Pioneer his story.

Finding out Max was deaf when he was tiny was a real shock. He must’ve only been about a month old. We also learnt that Max’s condition had a genetic cause and, through testing, realised that myself and my husband had a faulty gene, giving us a onein-four chance of having deaf children. When our younger daughter Olivia was also born deaf, we were devastated.

At the time, Max was fitted with hearing aids at his local hospital, but he still couldn’t hear much with them. Due to his level of deafness, he was referred to Great Ormond Street Hospital (GOSH). As Olivia was found to be moderately deaf, she didn’t need to come to GOSH.

I was quite naïve when we were first transferred to GOSH. I was happy we were there, but it was a reality I wasn’t used to. Everything was so new; there were a lot of emotions. It was also scary knowing Max would need to go through such a big operation so young but understanding what benefits the implants bring gave us hope for his future.

A LIFE-CHANGING OPERATION

A month after his first birthday Max finally came to GOSH to have his cochlear implants fitted. It was a big operation, lasting six hours, but a successful one.

After the operation, I stayed overnight with Max on Peter Pan Ward. We had our own room and there were lots of other parents staying over too, so it was nice to not be completely alone. The Play team would also bring Max toys; I remember his cot was full of them. He was only small but I’m sure he enjoyed it very much at the time.

“For families coming to GOSH for the first time, I would say you’re in absolutely the right place and your children will be taken great care of. I think it’s one of the best hospitals in the country.”

Then, two weeks later, Max’s implants were switched on and from then our journey really began. GOSH explained it was like trying to fine-tune a radio, where you hear a lot of sounds, but the frequency isn’t quite right. The implants don’t restore normal hearing; instead, they give a deaf person a useful representation of sounds in the environment.

It’s through speech and language therapy that you help a child with implants to listen correctly and understand the new sounds they hear. We did the speech and language therapy with Auditory Verbal UK. It was hard work but also a lot of fun because it was all play based.

MAX TODAY

Now seven years old, Max is doing really well. He’s incredibly active and energetic – just like Tigger from Winnie the Pooh, always bouncing around!

I don’t think Max even notices the difference the implants have made because he only really lost a year of hearing. The first thing he does when he wakes up is chat to you, so it’s easy to forget he’s wearing implants. Having said that, he is deaf, so there are things we need to be mindful of.

He gets more tired than other children because he has to focus in a different way, but he goes to a mainstream primary school with a deaf unit, so I imagine seeing other children who are deaf helps because it’s kind of their normal.

Max also got his new Marvels – a type of speech processor for his implants – from advanced bionics this year. They give him a better quality of hearing and connect to Bluetooth, meaning he can stream phone calls, TV programmes and music all through his ears!

COMING TO THE NEW SIGHT AND SOUND CENTRE*, SUPPORTED BY PREMIER INN

Max only goes to GOSH around once a year for a check-up now. We were very lucky to have our last appointment at its new Sight and Sound Centre too, which is amazing. The building is spectacular, and a real testament to how much care goes into treating children with sensory conditions. I imagine for a parent going there for the first time, it also feels very reassuring. When you first find out your child has a disability it’s difficult, so being able to meet other parents and see other children going through similar experiences is always helpful. I almost cried the first time I saw a child with cochlear implants talking because I didn’t really know what implants were. Having the new Sight and Sound Centre will help with that.

A MESSAGE FOR GOSH FAMILIES

For families coming to GOSH for the first time, I would say you’re in absolutely the right place and your children will be taken great care of. I think it’s one of the best hospitals in the country.

One of the things I love most about GOSH is that Max’s team haven’t really changed since he was 10 months old and they’ll continue to follow his progress until he’s an adult. The Play team is great too and crucial in any children’s hospital for lifting the children’s spirits and supporting the parents.

I’ll be forever grateful to GOSH because it gave Max his hearing; now he can communicate with everyone.

*The Sight and Sound Centre is the UK’s first dedicated medical facility for children and young people with sight and hearing loss. Housed in the building formerly known as the Italian Hospital, Great Ormond Street Hospital Children’s Charity pledged £25 million towards the completion of the centre, with support from a range of generous donors including Premier Inn. Sight and hearing specialties are co-located, meaning better multi-disciplinary working, in a building designed to meet the specific needs of children with sensory loss.

Great Ormond Street Hospital Children’s Charity 40 Bernard Street London WC1N 1LE 020 3841 3131 gosh.org

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