For any family, the arrival of a new baby is laden with anticipation and hopes for the future. When Eastenders actress Rita Simons had twins, her aspirations for her daughters Jaimee and Maiya were no different. But when the girls were six months old, Maiya was diagnosed with Enlarged Vestibular Aqueduct Syndrome (EVAS) – she was born without some of the nerve endings required to process sound. The family were told Maiya had no hearing in her left ear and could hear only loud sounds in her right. She was given hearing aids, and carefully monitored with regular hearing tests.
When we first meet Rita’s family, Maiya is in the office of her audiologist undergoing a test for Pendred Syndrome, a condition related to EVAS. The test is negative, but a misapprehension means their relief is short-lived. The test was not to learn if Maiya had the condition, but if her children could have it. For Maiya’s parents, the situation was a tense compromise: still anxiously hoping for signs that Maiya’s future might involve less hearing loss then they’d been told to expect; disappointed when the news didn’t come.
As with many children who have EVAS, Maiya’s hearing loss is expected to worsen as she grows older. The family have been warned that a bang on the head could cause Maiya to lose more of her hearing quicker than expected, and as we watch the scenes of a bubbly, active five-year-old playing with her sister, the constant alertness and tension is easy to see on her mother’s face. Faced with this advice, Rita and her husband Theo have begun to investigate possibilities for Maiya’s future.
It’s difficult to overestimate the challenges faced by two hearing parents making decisions on behalf of their hearing-impaired daughter. For Rita and Theo, their focus was ensuring that Maiya was able to continue living the fullest life possible, protecting as much of her hearing as they could, while not jeopardising their daughter’s burgeoning love of performing.
Foremost in the family’s mind was the possibility of a cochlear implant (a surgically implanted device that provides a sense of sound to a person), with the attendant risks and benefits. Watching a boy called Jack have his implant switched on was a moving experience for Rita as well as for the audience; watching him turn his head to seek the source of the sounds he’d told an audiologist he couldn’t hear, and then learning to interpret the unfamiliar signals, the most memorable moment was the grin on his face as he identified the new sensations.
Although buoyed by this experience, Rita seemed somewhat deflated when discussing Deaf culture with a group of hearing-impaired people. When one member equated giving a child a cochlear implant with abuse, she seemed subdued but remained determined as ever. She was, she explained, considering this because she cared about her daughter, and abuse is what happens when someone doesn’t.
The bulk of the documentary was a tender mix of pros and cons, advantages and concerns. Theo visibly blanched when he heard a sample of the sounds provided by a cochlear implant; Rita was moved to tears by the inclusive and supportive nature of a deaf school she visited. Even when the mother of another deaf child pointed out to Rita (while watching a video of Maiya and her father) how well the girl disguised the fact that she was missing parts of the conversation, Rita met this with calm interest, ever more resolute that her daughter would miss out on as little as possible.
Unlike the other documentaries in the Beyond Disability series, which portrayed people struggling against a flawed system, My Daughter, Deafness and Me showed a family exploring opportunities and possibilities. The Deaf community is one in which Maiya would be made welcome, not made to feel distant and unable to participate. In this company, she would never feel different to any of her peers. In an environment geared for a child with hearing loss, experts explained, Maiya would not have to work so hard to follow the lesson or conversation. Subsequently, she would be less tired and less likely to become irritable and throw tantrums which, according to Rita, are a regular occurrence both at home and at school.
When you know that your daughter’s hearing loss will definitely worsen over time, the offer of a cochlear implant can seem like another chance, a way to beat the odds. Theo points out the frustration of being unable to help his daughter, “I can't say, 'you know what, Maiya, take my ears. Take my cochleas. Have them.' Because I so blatantly would.”
At length, the family decided that Maiya would most likely have an implant in the future – when her hearing loss had worsened, but in enough time for her to adjust and learn to interpret the signals from the implant. As to learning to sign and attending a deaf school, the family seemed undecided – a decision to be undertaken later in life, when current uncertainties had played themselves out.
For an area so rife with ethical and personal considerations, the documentary provided a fine sense of balance, if not as much depth as some reviewers would have liked. Cochlear implants, however advanced the technology, are not a ‘magic bullet’ for hearing impairment and will not work for everyone. Unlike a bone-anchored hearing aid, the procedure is not reversible.
In spite of these concerns, though, maybe the most crucial part of the programme was the point raised in the discussion mentioned previously. One member of the group, fielding Rita’s question about why anyone would decide against a cochlear implant, observed that a hearing person will never be able to understand the issue from a Deaf perspective. Afterwards, Rita wondered aloud, “I cannot for the life of me fathom why, if sound is on offer, wouldn't you use it?”
With over 45,000 deaf children in the UK, Enlarged Vestibular Aqueduct Syndrome (EVAS) is thought to affect between five and 15 per cent of this number. As of 2010, approximately 219,000 people (28,400 children) have had Cochlear Implant surgery.
For more information on the condition in the UK and worldwide go to, http://vestibular.org/
For local support, please contact the Essex Deaf Children's Society, or visit http://www.ndcs.org.uk/family_support/support_in_your_area/about_local_g...
Written by Christe Louise Tucker
Edited by Laura Stackhouse
You can watch the documentary on the BBC iPlayer until Wednesday the 28th of March, http://www.bbc.co.uk/iplayer/episode/b01dwf9z/Rita_Simons_My_Daughter_De...