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Spreading joy through his family and community

Photo: Riaan

Riaan was born in April 2020, in the middle of a global pandemic. Because of the lockdown, investigations into why he failed his newborn hearing screening were delayed. 

“Sharan always had a gut feeling that something was wrong, whereas I was convinced his hearing was fine,” says Riaan’s dad Raj. “When we finally had it confirmed that he had hearing loss, I’ll be completely honest, it shattered me. The worst realisation was that Riaan hadn’t been able to hear our voices at all for 11 weeks. It broke my heart.”

“I always had a gut feeling something wasn’t quite right,” Riaan’s mum Sharan explains. “But for some reason I still wasn’t prepared. I felt that as a family we’d be stigmatised and people would feel sorry for us. I remember asking for a few minutes to call my husband and break the news. That was really difficult  because of coronavirus (COVID-19), the things we would have done together, we weren’t able to.”

Raj and Sharan are British Indians and were concerned about how their wider family might react to Riaan’s hearing loss. “Coming from an Indian culture, typically we don’t openly discuss things like this,” Raj explains. “There were members of both our families who struggled to come to terms with Riaan’s diagnosis. I don’t know whether they didn’t understand it, as language barriers didn’t help, or just couldn’t accept it.

“Certain comments did hurt. They’d say: ‘Look he’s moving his head to sound, his hearing is fine,’ or ‘It’s not that bad,’ or, ‘His hearing will get better.’ Nothing was said in malice, but we’d accepted the diagnosis and felt no shame about it. We really needed our families on-board. Our baby wears hearing aids, he cannot hear without them, he’s perfect and he’s exactly the person he’s meant to be.”

It wasn’t just the reaction from their family, but the wider community too. “The thought of taking him to the Gurdwara [the Sikh place of worship] for the first time and having all these strangers looking at our baby and thinking he was different wasn’t nice,” Raj says. “But I think that gave us the motivation to become real advocates for hearing loss.”

Raj and Sharan began to adjust to life with a newborn baby with hearing loss. “The first time I took Riaan to the outdoor sensory class, there was a lot of noise,” Sharan says. “It was the first time I thought, ‘Oh, my baby is a little different to all the others.’ But I knew it would all be OK if we just made slight adjustments for him.

“I did worry what my extended family would think too. I worried they would pity me and my child. I felt a sense of duty to open their minds, it was important that if people had any questions they should ask, it showed they were wanting to learn. After all, this was all new to us too.

“Part of me, selfishly, felt robbed of my perfect baby so, for me, it was really important to be honest about my feelings with my nearest and dearest, without feeling judged and like a bad mum. I believe if I’d kept these feelings to myself, I’d have struggled to move forward. Taking part in some of the National Deaf Children Society’s Zoom coffee breaks was a massive help – especially to hear from other new parents that I wasn’t the only one who felt like this.

“I remember asking Raj whether we should share Riaan’s diagnosis with our family, his response will always stay with me. He said, ‘Yeah of course, it’s nothing to hide.’ His answer made me feel very empowered. Our siblings, cousins and friends were very positive about the news. It was a little tougher with some of the older generation. I feel like that might have been due to the lack of education. Language barriers also made things difficult. However, when comments were made that I found offensive, I raised them immediately so that people knew how they made me feel, even though it wasn’t said with malice.”

Due to Riaan’s complicated additional needs, including being born with two holes in his heart, the family often had to attend appointments at the hospital. Sometimes Raj and Sharan could go together and sometimes they had to go alone, due to lockdown restrictions. “Riaan was always a little trooper when we’d go to the hospital,” says Raj. “He had such a sweet and cheeky little smile that would melt your heart. He took to his hearing aids so well; they looked so big on him but they didn’t bother him. I’ll never forget the smile he would give us every single morning when we put his hearing aids in for the first time, the genuine happiness and excitement in his little face will live with us forever.”

Very sadly, Riaan passed away at just seven months old. The family had already been spreading awareness, raising money and sharing their story, and now are determined to continue this, all in Riaan’s name. Raj and Sharan have since raised over £3,000 for the National Deaf Children’s Society.

“I have so many happy memories of Riaan,” Raj says. “It may sound silly but one thing I’ll never forget is the way Riaan would reach out and grab the drawstrings on my hoodie. My boy had me on a tight leash right from the start, and I loved it.”

“For me, it was the smile on his face when he heard my voice when I was out of sight,” Sharan adds. “It got me every time.”

“I think it’s really important for us to share our story,” Raj says. “There will be a lot of people, not just from our particular background, who will struggle with sharing the news with those around them. I would say to them, be proud of your child, they are exactly the person they are meant to be. Remember, this is new to your family, education is important. Share your knowledge and set the example to your child that they shouldn’t feel negatively about their hearing loss.”