Cape Town - The parents of little Allegra Lategan, the baby who spent her first days of life in a sandwich bag after being born at just 22 weeks, are facing a new struggle - their miracle daughter needs a R700 000 cochlear implant to secure her hearing.
Now teething, the busy one-year-old is a far cry from the tiny mite she was in August last year. But for her parents, the battle is not yet over.
To combat her hearing problems, Allegra wears a temporary hearing aid on each ear as she undergoes tests for a cochlear implant to help aid her hearing.
Her parents, Chantal and Hennie Lategan, say the road ahead is likely to be a long one.
Chantal said although the hearing aids, fitted on Tuesday, had already improved Allegra’s hearing, doctors had told them their daughter needed a cochlear implant within the next three months.
“If you shook a rattle before, she would take five to 10 seconds to respond to the sound. She has a much quicker response with the hearing aids, but the problem is we still don’t know what she is hearing.”
And they fear Allegra may never know the words mamma and pappa if they don’t raise the money needed.
“We have to get it. We want to try and give her a normal as possible life. She can hear certain sounds, but what she hears is not what we hear. It’s a distorted sound, like someone speaking underwater.
“The saddest thing is she doesn’t even know what my voice sounds like.”
Allegra was diagnosed with auditory neuropathy when she was eight months old, three months after being discharged from neonatal ICU. She has already missed out on a year of hearing.
The auditory neuropathy could have been caused by her premature birth, the fact that she was on a ventilator for a long time, the extra oxygen she received, or her medication and blood transfusions.
“Sometimes she hears, at other times nothing registers. We just keep talking to her like we would to any other baby. We don’t know how much she understands.
“When you say ‘no’, she just smiles at you. If she doesn’t get the implant, she will never be able to speak or understand any form of language.”
Chantal is worried about how they’ll raise the money for the cochlear implant.
“But she is adamant her child – who is named for a musical term which means “fast and cheerful” – will one day be able to hear and play music.
“She’s a little fighter. That’s why I say we’ll get through this. Money is coming in very slowly, but we are positive.
“The medical aid is paying a small amount. The Tygerberg Nature Reserve has a fundraiser planned and the church has opened a bank account for her.”
Dr Lida Muller, an audiologist at Tygerberg Hospital’s cochlear implant unit, said if Allegra got a cochlear implant, and she and her parents got the necessary training and support, she would be able to hear music.
Allegra would be able to develop speech and language at a rate similar to that of children of normal hearing if she got the implant before she turned two – and had no other disabilities.
“Sound is different with a cochlear implant. But many adults and older children, who lost their hearing and then received a cochlear implant, say it sounds close enough to how they heard before,” Muller said.