March 2017 Deccan Herald

komalThe mother of a one-year-old slipped into depression. Their usual family outings on Sunday did not happen anymore. There was less social interaction with others, too. For Komal’s family, it was not easy to cope with the fact that the child had progressive hearing loss. When she was just over one, she was diagnosed. Komal is now a nine-year-old who is in Class 4 at a CBSE school. Like most other children her age, she leads a normal life. A cochlear implant has made that possible.

She was among the children who met former Australian cricketer Brett Lee, the global hearing ambassador for Australian firm Cochlear. Komal has a unilateral implant and her family hopes to get the implant for both her ears.

“Her case is the first in our family. We had found no need to get her screened when she did not respond to sounds well. She was also a silent child who did not talk much,” said her mother.

Initially, Komal’s mother was told by family and friends that the second child develops speech late compared to the first child. However, when her condition did not improve, her parents took Komal to a doctor who diagnosed her with progressive hearing loss. Her mother said “At first, we put her on a hearing aid. It did not make much of a difference. When she turned two, she got an implant.” The child had to undergo speech therapy for over a year to be able to gather sounds and respond. “Yellow was the first colour she learnt; that is her favourite colour,” said her mother. Komal’s family also emphasised on the need for therapy following the implant as the child must pick up the language by hearing sounds and not by action or lip movement.

Feb 2017 Bournemouth Daily Echo

It is the permanent tribute to the team who literally saved her life. Tattooed on her arm, Barbara Day has the words ‘A tribute to the West Team. Hear always and forever’ alongside a drawing of the electronic device that turned her life around.

Barbara became so distressed by her profound deafness and tinnitus, the debilitating condition which causes sufferers to hear constant ringing, humming or buzzing sounds, that she planned her own suicide. However the 66-year-old had a Cochlear implant fitted and for the first time since she could remember she could hear again. Speaking ahead of World Hearing Day in March, she said: “It has saved my life. I couldn’t believe it. I always remember this. I took the rubbish out to the bin, opened the back door and there was this noise - it was the birds singing. It was just magical.

I stood there and cried and cried.”

When Barbara was at school, she was punched in one ear, damaging her ear drum. Years later she gradually became deaf and by 41, she was fitted with two hearing aids. The music lover, who used to play the guitar and organ, resorted to holding a balloon at parties to feel the vibration of the music. But when she developed tinnitus and could not block out the crashing noises with other sounds. Barbara became sleep-deprived and depressed, she couldn’t face the future. “I became increasingly withdrawn. I felt like I was in my own world. The noise from the tinnitus was horrendous and had become unbearable. It drove me nuts. It was a combination of the sound of a crashing Niagara Falls, a motor running and a loud whistle. I was told to listen to music to take away the noise, but I couldn’t hear music so how could that work? I’d have to go for a car ride to distract myself in the middle of the night. I couldn’t go on living like that. I just wanted to do away with myself. I thought about how I could take my own life. I was desperate.”

Worried, Barbara’s partner called the hospital and arranged another appointment. The couple found out about a cochlear implant. A scan revealed evidence of bilateral otosclerosis, a disease of the bones of the middle and inner ear, but a lifetime of taking antibiotics for the chest condition bronchiectasis may also have contributed to her hearing loss. After numerous tests, she discovered she was eligible for the procedure at Southampton General Hospital.

“I hear clocks ticking, birds singing and so many other things that I had forgotten about. I can go out with my friends, hold a conversation and hear music when I’m dancing. On the drive home after the switch on I could hear indicators and police sirens: all those noises I’d forgotten. I’ve got my confidence back. I can't stop talking now! I talk to everyone even in the supermarket.” Even though she still suffers from tinnitus, the sound she can hear with the implant means she can cope better by blocking out the noises by listening to music or talking. “It is hard to believe now that I was so low, I wanted to end it all. It seems so crazy now. Now I am just enjoying all these noises! I was so overwhelmed with what happened, I had to do something. I was so excited. I went and had the tattoo! My life is magical now and every time I put my processor on in the morning I think of the West Team and all the wonderful staff  at University of Southampton who do all the assessments and the mappings and Tim Mitchell who did the op is my absolute hero. They have helped me so much. I am so grateful to them all.”

March 2017 Children's Hospital of Michigan

Michelle and Willie Barford of Westland welcomed their first child Taylor in 2005. Taylor was a happy, healthy baby but when she was 3-years-old, they decided to have a hearing test. “Taylor was not speaking clearly. Even though her newborn hearing screening was normal and we could understand some of what she was saying, we thought she should have another hearing test,” Willie says. The results were shocking. Through auditory brainstem response testing, Taylor was diagnosed with bilateral auditory neuropathy spectrum disorder (ANSD), a rare type of sensorineural hearing loss that specifically affects how the auditory nerve transmits sound. Michelle says she was surprised by the diagnosis because Taylor would respond to what was being said. “We found out Taylor was an amazing lip reader,” Michelle says.

Once Taylor was old enough to participate in behaviour testing, she was diagnosed with severe to profound hearing loss in her left ear and moderate to severe hearing loss in her right ear. Hearing aids were recommended, and they helped according to Michelle, but Taylor was not hearing as well as she could. “Our first recommendations were to conservatively fit her with bilateral, behind the ear amplification and closely monitor her auditory, speech, and language development,” says Leslie Parent, senior paediatric audiologist at the Children’s Hospital of Michigan. “After careful monitoring and numerous assessments of speech recognition ability, we discussed the possibility of having a cochlear implant.”

Taylor benefited tremendously from her left cochlear implant and subsequently proceeded to a right cochlear implant. Michelle and Willie were thrilled to see that the implants worked wonders on Taylor. “After the implant, Taylor said, ‘I can now look at your eyes when you talk.’,” Michelle says.

Taylor, who is now 10-years-old, went from not speaking clearly and needing speech therapy to now having normal speech. She enjoys school, swimming and is an award-winning dancer. 

Taylor Barford  Taylor and Mya Barford   

Being more aware of warning signs of hearing loss, the Barfords noticed their younger daughter, Mya, may also be at risk. Hearing tests confirmed Mya also had ANSD in both ears, and Mya also benefited from cochlear implants in both ears at the age of 2. “Mya, who is 5-years-old, is also doing amazing after the cochlear implants. Her speech has now progressed to a normal level for her age,” Michelle says. The Barfords feel very fortunate and blessed that, thanks to the implant and successful treatment, their daughters have an amazing gift of hearing that many take for granted. “Both of my daughters were great lip readers, so it was not so easy to figure out what the problem might be. I would encourage all parents to see a doctor early on if there is any question about your child’s hearing and speech. It made a world of difference for Taylor and Mya,” Michelle says.

March 2017 Pretoria Star

Venter FamilyLIFE-CHANGING SURGERY: Corban Venter, 10, and his sister Samantha, 8, with their parents Tania and Johan Venter after receiving cochlear implants in the Zuid-Afrikaans Hospital in Pretoria.

“For the very first time my children will be able to hear my voice, and they will be the ears and eyes of our family.” These were the heartfelt words of the elated blind mother of two deaf children, who had a cochlear implant operation at the Zuid-Afrikaans Hospital in Pretoria. Parents Johan and Tania Venter both have 5% vision and are essentially blind. Their children, Corban, 10, and his eight-year-old sister Samantha, were born deaf. “I can’t wait for them to call me mom,” said a teary Tania, who suffered from a progressive degenerative eye-disease, retinitis pigmentosa, that left her blind. The family communicate by touch alone; the children cannot hear their parents speak and the parents cannot see their children sign.

The road leading to the operation hasn’t been easy, and they’ve tried to raise funds for the implants for many years. They eventually joined the Foundation for Children with Hearing Loss in Southern Africa, which works hand in hand with the Pretoria Ear Institute, where the cochlear implant operations were conducted. A fundraising campaign was established to raise more than R800 000. By the end of 2014, the siblings’ mother and the Foundation for Children with Hearing Loss had raised R136 000, leaving a shortfall of R668 000. The Nellie Atkinson Trust, managed by NedGroup Trust, stepped in with the outstanding money. Its spokesperson Lorenzo Davids said the delay in having the cochlear implants would have been detrimental to the children’s chances of a proper education, and of becoming independent and employable adults.

The Venters said although they were a unique family with disabilities, they tried to lead a normal life. Their biological father, who is sighted, left the family when the children were very young. Their mother recently married Johan, who is also blind. Johan said they had developed ways to carry out a conversation. The children know to knock and bang on doors and walls to attract their parents’ attention and help their parents with the daily chores around the house. He explained that when they are in public places like a mall or a park, they can’t call or see them, which made ensuring their safety difficult. They had to rely on external help. “And because they know we cannot see, they tell us colours and give us descriptions of pictures, events and clothing,” said Tania. They also help their mother to pair up her shoes and hold her hand to allow her to feel the texture of clothes. The children love looking at pictures, which they describe to their parents, and, like most girls her age, Samantha loves to take selfies. Corban and Samantha attend school at the Transoranje School for the Deaf across the road from their home in Pretoria West. Their mother is a teacher at Prinshof School for the Visually Impaired, while Johan works at the Tshwane University of Technology.