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Angela and Noli Tebe with Royal Free audiology department clinical scientist Jane Bradley, right |
‘I feel I’m getting my child back’
TODDLER Noli Tebe was a chatty child until she was struck down with a potentially fatal virus on Christmas Eve.
While other families were putting out milk and biscuits for Santa, Angela Tebe was watching her 14-month-old daughter go through an agonising lumbar puncture, which confirmed her worst fears.
Little Noli had contracted pneumococcal meningitis, a rapidly spreading infection in the spinal column which can lead to death or severe brain damage.
Two years on, Noli has almost fully recovered from a disease which left her completely deaf. She has become the first child at the Royal National Throat, Nose and Ear Hospital, in Gray’s Inn Road, King’s Cross, to be fitted with simultaneous bilateral cochlear implants, which digitally restore hearing.
Her mother, who lives in Parliament Hill, said she suspected Noli had meningitis when she took her to hospital.
“I had a real sense of foreboding,” she said. “I went in with her when she had her lumbar puncture. It was a horrendous experience. They had a huge, thick needle, about three inches long, and were trying to put it into the spine of a child who’s in pain and distressed. But they had to do it.
“It was a strange feeling. I was so scared I couldn’t feel anything. I would come out, talk to my friends and sit crying. I thought ‘I’m really going to lose her’.”
But five days later, after being pumped with antibiotics and closely monitored by doctors in intensive care, Noli had turned the corner.
Ms Tebe said: “We brought in some of her toys and she reached out to one and I thought: ‘She’s still in there’. It was like having a new-born. She had to relearn everything. She had to learn to chew, sit up, crawl and then walk.”
Soon Noli was to go home, and within four weeks she was walking again. But, although she appeared to be on the road to recovery, her family realised she was not responding to sounds as she should.
Ms Tebe said: “We would pop balloons behind her back and she wasn’t responding. We pushed the hospital for a hearing test. They came out with a folder from the National Children’s Society and said: ‘Your child’s deaf’ and I just thought ‘Surely, this is temporary’.
“But I knew the type of meningitis she had could result in permanent deafness. Until they say it, you don’t really believe it. I was thinking: ‘How is she going to talk? Is she going to be able to communicate with the world?’”
During her research into the effects of meningitis, Ms Tebe had read of the possibility of fitting cochlear implants, which digitally replace the entire function of the ears. She said: “I knew if Noli needed implants and was to have the maximum benefit of speaking again they had to be done soon.
“She was referred to Great Ormond Street Hospital but they had a six-month waiting list. They put her onto the Royal Free, who had no waiting list and they did a barrage of tests. It’s major surgery. They have to drill through the skull and put it inside the inner ear.”
Doctors at the Royal National Throat, Nose and Ear Hospital, which is part of the Royal Free, offered Noli an implant in one ear but Ms Tebe wanted more than that.
She said: “Up till last year they only gave one implant. But I said to the doctor: ‘You wouldn’t give a child just one hearing aid. Give me a clinical reason why you can’t do both ears. You wouldn’t give someone just one contact lens.’
“They had to have a bit of a wrangle with the primary care trust. It was literally down to the last minute but we got the funding for two.”
Noli made a full recovery and is now undergoing intensive therapy three times a week with the aim of catching up with children her own age by the time she’s five.
Ms Tebe is still coming to terms with the impact Noli’s illness had on her life. “It’s hard,” she said. “You have so many emotions about it. You feel angry, sad. You feel why my child? It’s an everyday thing. You’re having to work with your child to make sure she’s OK.
“The first time she said ‘mummy’, I thought ‘wow’.
“This morning she told me her throat hurts. I have those moments where I feel like I’m getting my child back.” |
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