Special needs. Microtia
Thanks to early intervention, little Atlegang has a bright future ahead of her, writes Margot Bertelsmann
TWENTY-FOUR-YEAR-OLD
Soweto resident Lesego Maimane was doing well: she had a job as a service consultant at FNB and she was expecting her firstborn with boyfriend Philimon Lekgetho. Life was good – until she went into labour prematurely at 34 weeks. She rushed off to Baragwanath Hospital and delivered little Atlegang, a beautiful baby girl, on 8 April 2017 via natural delivery. That’s when a lot of new, big, scary medical words entered the new little family’s lexicon. Atlegang had bilateral microtia. Lesego may not have known the words but looking at her baby it was clear: her baby’s ears did not look right. “As soon as she was born the doctors quickly took her to the nursery. After some time I asked if I can see her – that’s when I noticed her ears. The doctor said since she was premature there were a lot of complications, they would run tests and get back to me to explain everything,” the young mom remembers. “When I first saw her I was shocked,” Lesego admits. “My mind was full of questions. I couldn’t believe what I was seeing. I thought maybe it’s because she came before her time that’s why her ears are like this. Maybe she wasn’t done developing.” (Actually, microtia occurs in the first trimester of pregnancy, so prematurity is not a factor.) “I only discovered her ear problem when she was born,” remembers Lesego. “I had no idea of it when I was still pregnant.” Microtia is hard to diagnose on an ultrasound and is not often spotted by doctors antenatally.
Lesego lives with her mother and grandmother about 20 minutes from Philimon. The older ladies care for Atlegang while Lesego is at work. “Our family was surprised, asking ourselves why are the ears like this? What happened? Is she going to be fine? Can she hear? It must be something that I ate while pregnant. But in the end they also said it was God’s will that she was born this way.” Philimon was similarly accepting. Lesego remembers: “He was in disbelief. He was shocked, thinking she won’t be able to hear. He was heartbroken as she is just a little girl, she doesn’t deserve this. But he concluded that it is all in God’s hands.”
Where to next for the bewildered parents? Government healthcare did deliver: Atlegang had hearing tests soon after birth. It was established that her inner ears were intact, which was great news as it means less severe hearing loss. “According to the test result her left ear is normal, and there is mild hearing loss in the right ear,” says Lesego. “The BAHA, a hearing aid that looks like a hair band, might works for her, but costs start at a whopping R55 000. The doctors are still deciding if it’s right for her.” Atlegang was referred to the speech and hearing department at Bara, where she still receives speech therapy.
The speech therapist also recommended Lesego get in touch with the early intervention programme Hi Hopes, where her family is now receiving individualised targeted interventions through home visits by
meeting with an interventionist every two weeks. “Dikonketso Moabelo, or Konkie as we know her, comes to us to observe Atlegang,” says Lesego. “She asks questions, like, can Atlegang sit on her own, does she respond when we call her, and so on. She also assesses her on her own by for example pointing to a toy, saying, ‘Atlegang, take that toy,’ to see if Atlegang can hear and understand. She also gives me some homework on how to train her to not be delayed in speech and physical development, and she teaches me some tricks and gives me advice.”
Atlegang’s geneticist has advised the family that plastic surgery can be performed to correct the appearance of the ears at about five or six years of age.
Lesego is mad about her baby: “She is so active, so bubbly, she gets excited and she loves to explore. She makes a lot of noise, saying words like mama, papa and gogo. She screams, she laughs, she’s just a happy child. Being a mom, knowing that you brought such a beautiful soul into the world is just overwhelming. And to see your child developing well, responding to nature, having them depend on you… it shows how valuable and important we are as mothers.”
Lesego says her grannies chose the baby’s names: “Atlegang means succeed and Bokamoso (her second name) means future, so it’s ‘succeed in future’.” And with the love, care and targeted early interventions this lucky little girl is receiving, that’s exactly what she will do.
HI HOPES Almost exactly 20 years ago, Professor Claudine Storbeck started the Centre for Deaf Studies to provide training for teachers of the deaf, in response to the fact that there was no centre in Africa that trained teachers for deaf children. Children were arriving at grade 1 in schools with limited or no communication skills, and 2008 research by Deafsa found that deaf children were leaving high school with severely delayed literacy, general knowledge and communication skills. Families desperately needed support from birth to age 3, the years that are crucial for language development and communication. Early intervention is of paramount importance. In fact, says Hi Hopes audiologist Dr Sel Moodley, “a child needs intervention before the age of six months if there is to be no language delay”. Families need to explore their communication options in accordance with their needs, resources and abilities.
Prof Storbeck adapted a US programme, bringing trainers to South Africa to train interventionists here, and in 2006 Hi Hopes (www.hihopes.co.za), attached to the Wits School of Education, was born. Its mission: To provide free home-based support and information without bias, on a fortnightly basis, to every family with an infant or toddler who has a hearing loss. Since 2006, the programme has spread nationally to offices in Gauteng, KwazuluNatal, Limpopo, Mpumalanga, and the Western Cape, has more than 100 interventionists and has touched more than 2000 families.
“Hi Hopes is about grieving with the family, helping them to accept that the child has a hearing loss, and helping them find the best options for their child,” says Dr Moodley. “It’s taking what an audiologist or speech therapist has given you and figuring out how to implement in the home within your natural family life, whether that is learning Sign or spoken language. Children under three will have a development assessment every four months, and if they are not achieving one month of development for every corresponding month of intervention, then we discuss changing the intervention structure.” YB
HI HOPES IS ABOUT GRIEVING WITH THE FAMILY, HELPING THEM ACCEPT THAT THE CHILD HAS A HEARING LOSS AND FINDING THE BEST OPTIONS FOR THE CHILD