For Pretoria nursery school owner and former IT consultant, Haidee Olivier, 41, the restoration of both her and her four-year-old son Tiaan’s hearing, has transformed her into a passionate advocate for the hearing-impaired
Having slipped through the diagnostic gaps as a child, suffering interminable teasing and bullying for not listening (as she couldn’t hear) at school, Haidee was only diagnosed with Microtia and Atresia just after Tiaan was born. Tiaan was born entirely without one ear, leaving him totally deaf on his left side.
Discovery Health Medical Scheme funds hearing recovery for mother and son
An audiologist brought in by her gynaecologist was horrified to accidentally discover that Haidee had lived her entire adult life without proper hearing. "In my case, my left ear was only one centimetre smaller than the right one. You can't see it unless I point it out, but I was told I was naughty at school because I never seemed to listen. Children were horrible to me. Eventually I hated school so much that I bunked an average of two days a week for my entire matric year. They said I was stupid, and eventually I started believing them. I had no idea I was partially deaf. What I could hear was normal for me. I gave my netball teacher heart palpitations when I regularly turned up for practice, having missed her morning maths classes," she laughs.
Transformative hearing devices for Microtia and Atresia
Microtia is an external deformity where the ear is underdeveloped or missing (microtia-anotia). Atresia is the narrowing of a passage or opening in the body (in this case, the ear canal). Haidee now sports a Med-El Bonebridge device and Tiaan a Med-El Vibrant Soundbridge hearing aid, (the Soundbridge anchored via a hole in the skull to the hearing bones in her middle ear, the Bonebridge is anchored in the skull). Getting to this point hasn’t been easy – especially for Haidee.
She describes three extremely painful and unsuccessful procedures in her early 20s. Surgeons removed and replaced the hearing bones in her middle ear with a prosthesis. After an operation to fit a bone-assisted hearing aid (BAHA) in 2014, the surgical wound became infected. “I kept on getting horrible infections around my BAHA abutment, which made life unbearable,” she says. She had the subsequent operation to fit her Med-El Bonebridge device in March 2017 and found it absolutely amazing to be able to hear properly for the first time.
Previous, unsuccessful procedures left her floundering in corporate IT meetings where sounds merged and she was unable to follow a speaker unless she could see their lips moving. Her husband would call out something to her from another room and she had no idea where he was, her directional hearing completely dysfunctional. She describes her experience of the previous BAHA device as like hearing someone in a large hall with far away echoes. With the Bonebridge device, sounds are far clearer and closer. After her first fitting of the Bonebridge hearing device, the people around her asked her why she wasn’t sharing the experience them. “ I was so busy marvelling at the clarity of her new hearing that she simply wanted to keep it to myself for a while,” she says.
Due to developmental considerations Tiaan started out with a BAHA hearing aid at just under a year old, progressing to the Vibrant Soundbridge device with a surgical installation procedure in September 2016.
Watching Tiaan’s face when the audiologist first switched on the BAHA hearing aid is something Haidee will never forget. He was just stunned. “He immediately ripped his head to the left (the deaf side),” she recalls. They were told that Tiaan was actually hearing better than they were because the sound-booth test involved Tiaan throwing a block in a bucket every time he heard a sound. Several times he threw a block when they couldn’t hear a thing. They thought Tiaan was mistaken, but the audiologist refuted this saying his sound range was now better than theirs.
Discovery Health Medical Scheme funds Haidee and Tiaan’s hearing recovery
“Were it not for Discovery Health Medical Scheme (DHMS) fund multiple operations and progressive devices totalling nearly R700 000, resulting in full hearing for me and Tiaan, our lives could have taken tragically different trajectories,” says Haidee, “The interventions have had a profound impact on our lives. My life without my new Med-El Bonebridge device would have been so very different. I’m really grateful. I’d like to thank the DHMS from the bottom of my heart. There is no way my son and I would have been able to have receive the gift of hearing, were it not for the scheme. Words are really not enough to share our gratitude. I’d like the scheme to understand that what has been done means so much more than just giving me and my son hearing. You’ve given my son a whole new lease on life! For that, I will always be thankful.”
“DHMS is one of the few medical schemes that funds the state-of-the-art hearing implants and procedures. This means there are uncounted numbers of people in similar situations as me and Tiaan, but with insufficient knowledge or help and who face an unnecessarily muted future,” she adds.
Haidee believes that all the heartache she went through has given her the compassion and understanding she needs to help Tiaan. She recently told her story to a kindred mother waiting with her hearing-impaired son in a specialists’ surgical rooms. “She broke into tears and wanted me to tell her absolutely everything about hearing impairment. It was the first proper insight she’d had into her son’s experience,” says Haidee.
Helping those whose medical aids don't cover hearing-impairments
Haidee has given Tiaan’s BAHA device to a woman in Port Elizabeth whose eight-month-old baby girl suffers from an almost identical condition. “I don’t know what medical scheme they are on but she said their scheme wouldn’t even pay for the tests out of their medical savings. They had to pay for everything. There’s no way she could afford a BAHA device - the first and easiest option for a little one to start hearing,” she adds.
Asked how she and Tiaan’s lives might have turned out if they’d had lesser cover or none at all, Haidee doesn’t hesitate, “I’d have died if Tiaan wasn’t able to hear properly. It kills me to think about Tiaan going through anything remotely like what I’ve had to go through. I know how it would have killed him off, little by little as he grew up – and he’s such a larger-than-life personality.”
Asked about the genetic manifestation of Microtia or Atresia in her family, Haidee says she’s seen it nowhere else but in her children and herself. Her first-born Markus, now 21, managing her pre-school and planning to study early childhood development, was born with two small nodules in front of one ear. These were duly excised by a plastic surgeon and he’s never suffered any hearing impairment. Her middle-son, Janu, 8, had no such abnormalities.
Haidee has taught Tiaan to manage his disability. At first, he was shy about his little bean-like malformed ear on the left side of his skull, but she’s now helped destigmatise it to the point where he allows people to touch his implant and tells them all about it. “I told him God made him the way he is for a reason and that he’s special enough to be chosen and strong enough to carry this. I always joke, telling him we’re the transformers.”
A transformer Haidee certainly is. Together with the founder of the Microtia/Atresia Support Group South Africa, and another mom of a boy with Microtia/Atresia, Haidee tries to assist people whose children have hearing impairments. Together they are planning a grand picnic for affected families from all over South Africa, hopefully around February or March 2018. Seeing another young boy with the condition walk past her after one of her son’s cricket games recently helped her realise the dire societal need for information and support. “I want everybody that’s affected by these two conditions to be part of a group and not feel alone. I don’t want parents to cry non-stop for the first year of their child’s life like I did,” she adds passionately.
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