Actress Rita Simons has given an exclusive interview to HELLO! magazine in which she reveals daughter Maiya will undergo a life-changing operation to enable her to hear. The six-year-old girl is profoundly deaf in her right ear and has only limited hearing in her left one. Now, after much soul-searching, the Albert Square star and her husband Theo Silveston have decided that Maiya will undergo a cochlear implant operation to give her hearing in both ears.
While an implant cannot give Maiya normal hearing, it does give the sensation of sounds. The surgical procedure involves drilling a hole in her skull, through which an electronic device that stimulates her auditory nerve can be inserted. As with every medical procedure, there is a certain amount of risk involved; potential complications include infection, impaired facial sensation and damage to all or some of the residual hearing. Yet in 95 per cent of cases it is successful.
Rita and her daughter in 2012
Having been told that, without surgery, it is inevitable that Maiya will go completely deaf, it's little wonder that Rita and Theo have seized upon this potentially lifechanging opportunity. Yet it's a decision that has led to the couple being criticised, vilified and even accused of child abuse.
"The hostility we've encountered has been extraordinary," Rita told HELLO!. "It comes mainly from people who firmly believe that deafness should be embraced rather than treated as a physical deficiency that should be corrected. I totally respect their point of view. But when a 19-year-old girl told me that I was an 'abuser' to let my child have a cochlear implant, I was horrified and deeply hurt.
"I would throw myself in front of a bus for my girls, and yet I was being judged by someone who didn't know me or understand my emotional stance at all. "We know it's not a miracle cure and her hearing won't be perfect. But, in time her brain will process what it is hearing and compensate, making sounds more familiar to her."
Rita and her twin daughters pictured in 2018
Rita and Theo realised that there was something wrong with their eldest twin’s hearing not long after she was born, on her dad's 30th birthday. "When the nurse checked it, she couldn't get a reading," remembers Rita. "The [hospital staff] put it down to fluid on her ears. After we returned for another check-up, they called it 'glue ear'. But, as parents, you know when something's wrong.
"We'd try to test her hearing at home, banging saucepans to see if she reacted. For months we were in denial. When you've never had a child before, let alone a deaf child, it seems like a huge deal. You think, 'Oh no, I'm going to have a child with a hearing aid.'"
It was six months before Maiya was officially diagnosed as having only partial hearing in her left ear and virtually none in her right. She has no hair cells inside the cochlea – her inner ear – which are meant to function by triggering impulses to the auditory nerve when sound passes through them. "After the doctor broke the news, my reaction was to calmly walk away," recalls Rita. "But by the time I'd reached my car, I was bawling my eyes out. When I pulled myself together, I realised I would have to face facts: my daughter is deaf."
Rita Simons showed off her daughter's hearing aid on Instagram
At eight months, Maiya was fitted with hearing aids, which placed a huge emotional strain on her and her parents. "She would frequently pull them out because she didn't like the feel of them," says Rita. "We wanted her to be able to hear – at that stage of her development it was vital – but, at the same time, we loathed seeing her in discomfort.
"It was a huge conflict for us, and sometimes we'd try to tape the aids on to her tiny ears. In the end, we put mittens on her hands so that she couldn;t flick them out."
However, it wasn’t until Maiya was four that Rita and Theo had a much clearer picture of their daughter's hearing loss. Tests revealed that their little girl was affected by two problems: Mondini malformation, which means the cochlea has developed incompletely; and a defective vestibular aqueduct, a narrow, fluidfilled canal in the inner ear. "We were told that Maiya's hearing will further deteriorate," says Rita. "She went from being moderately deaf to severely deaf in both ears, then from severely to profoundly deaf in her right ear. We’re convinced that the hearing in her left ear will also get worse.
The original interview was published back in 2012
"At first, we were warned that a knock to the head could damage her hearing, too," continues Rita. "A consultant gave us a list of activities she should avoid, including contact sports, gymnastics and horse riding. "We thought that if we could protect her head from bumps, she would never lose what hearing she had, but it's tough trying to protect a small child from the rough and tumble of their normal lives.
"We only found out a year ago, when we spoke to experts while making the documentary, that she will lose her hearing anyway." Flinching at the memory, Theo, who owns a hairdressing salon, recalls: "We were told on camera. It felt like a punch in the stomach. That was the hardest moment for me. But speaking to people – musicians, singers, actors, teachers, lawyers – who have had cochlear implants and said it was the best decision they'd ever made, clinched it for us.
"We were also told that Maiya has a high IQ. This was fantastic to learn, but it made us wonder: would we be restricting her from flourishing even more by denying her the extra sound missing from her life? "After many more years of deterioration in her hearing, would that gap in her progress be harder to bridge?" Theo explains. "It's impossible to prove either way, but it's not a risk we are prepared to take." When Rita and Theo sat Maiya down and explained what a cochlear implant would entail, she didn’t recoil in horror. "She replied matter-of-factly, 'Yes, I'll have one of them,'" says Rita. "She understands [the procedure] through her anatomical book on the human body, which she loves."
Maiya's twin sister Jaimee has perfect hearing. And the actress says that the family is determined to treat the two girls the same. "We've brought Maiya up as a hearing child, and she attends the same mainstream school as her twin sister," Rita explained. "She was born with some hearing; when that goes completely it will leave a void in her life and she will miss it.
"All we want to do is give her back what she has lost and help to expand her life. If you've got the opportunity to give your child the gift of sound, why would you not do that?"