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Cape Town baby's joyful journey to sound after surgery

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BANG! The bedroom door slammed shut, but didn't even startle Neave Fern Barrett when she came home after her birth. 

The weeks that followed the joyous birth of Neave were taxing for her parents, Mark and Mia from Hout Bay in Cape Town, as it slowly dawned on them that their little girl may have hearing loss.

Direct access to sound

At one month old and after several hearing tests, Neave was diagnosed as profoundly deaf.

"We were devastated," said Mia. "Thankfully, we have since found hope through cochlear implants."

Health24 has been tracking Neave's journey to sound. At just three and a half months, she was the youngest baby in South Africa and one of the youngest in the world to get a cochlear implant.

Read: Cape baby is one of the youngest in the world to get life-changing surgery

The cochlear implant operation on Neave involved implanting a series of electrodes into her cochlea to bypass the ineffective hearing organ and give her brain direct access to sound. An external processor, connecting with the internal implant, was then fitted to the outside of Neave's ear to pick up sound to help send electrical signals to the brain.

The device was implanted in Neave's right ear in January and activated a month later. Health24 was present when Neave experienced sound for the first time.

"The switch on itself was amazing, surpassing our expectations, as we saw genuine delight and wonderment in Neave as she experienced sound for the first time."

Read: Magic as Cape Town baby hears for the first time

Now Neave's blue eyes light up when she hears her own sweet gurgles, the voices of her parents talking to her and her big sister shouting with excitement.

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Image: Baby Neave with her mother and sister.

"When we put her sound processor on in the mornings it is like she wakes up just a little bit more and her eyes are brighter," said Mia.

"She starts babbling more and wants to communicate verbally when she's connected. It is wonderful to watch!"

Second cochlear implant

Mia said that initially the biggest challenge was keeping the sound processor in place.

"Because Neave was so little and still spending time lying on her back for much of the time, she would move her head and the device would fall off and then she couldn't hear anything.

"We've since solved this issue, for the most part, with her wearing little surgical caps, which we've dyed and decorated to make them a bit prettier."

With her first two teeth starting to appear, Neave is now almost nine months old and had her second cochlear implant activated on 22nd June, after having surgery to her left ear earlier in the month.

Read: The importance of having your baby's hearing tested

“It’s amazing to see her have access to stereo sound for the first time. She is more aware, more engaged and able to ascertain the direction of voices and sounds," said Mark.

This operation was planned for 9th May, but the family ran into some disappointment when it could not take place.

"When she went into theatre, Neave's surgeon, Dr Derrick Wagenfeld, discovered that she had fluid in her inner ear, which meant that the operation could not take place due to risk of infection."

Dr Wagenfeld, an ear, nose and throat specialist, who championed cochlear implant surgery in South Africa, inserted a grommet into Neave's ear to help drain the fluid and rescheduled the operation for three weeks later.

"The operation went well and they even allowed us to go home the same night," said Mia.

Learning to listen

The family has been working closely with specialists at the Carel du Toit Centre to help Neave to "learn to listen".

The first few months of a baby's life are crucial for the auditory part of the brain to pick up sounds, which later helps with learning to mimic sound and learn language. This can be difficult for children like Neave, but through early intervention they can develop at the same pace as other children and eventually learn to speak.

Mia takes Neave to the Carel du Toit Centre every Wednesday for a session with speech therapist Babara Kellett, and regularly to see audiologist Surida Booysen.

Neave is doing exceptionally well and is responding very well to environmental sounds and voice, said Booysen.

She said Neave is currently developing appropriately for her age, with her babbling patterns showing a nice variety in the pre-verbal stage of talking.

Read: Do cochlear implants give someone normal hearing?

“Neave's responses to sound and vocalisations are no different than that of another 9-month-old girl with typical hearing,” said Booysen.

Kellett pointed out that Mia is able to use every day routines and experiences to develop good listening, which will form the foundation for good communication, speech and language development.

Definite progress

“She naturally applies strategies that enhance communication and is aware of the role audition plays in language development,” she said.

Mia added that she enjoys her sessions with Kellet and Booysen. “They refocus me each week and fill me up with ideas and motivation for continuing on this road."

Describing what the speech therapy sessions entail, she said for now the focus is on sound awareness and showing Neave the connection between a sound she hears and the object it is coming from.

"So, we use lots of sound makers, such as rattles and shakers and crinkly paper to demonstrate different sounds and show this to Neave. And the most awesome thing is that we are seeing definite progress. She is turning to see what is making the sound."

 

Watch this video of Neave turning to see where the 'squeaky' sound is coming from 

"This was the first consistent looking for sound that I observed with absolute certainty and it was such an awesome day," said an excited Mia. 

"She's also definitely responding to voices and recognises the voices she hears most often. She looks to find the person when she hears their voice. This warms our hearts."

Although Neave's operations were largely covered by the family's medical aid Discovery, a fund raising initiative was started for further costs involved with family and friends opening their hearts and wallets.

Safari half marathon

"We have raised more funds than we set out to raise, which is just amazing, and the additional funds raised online, as promised, will be going to support another child or children in need of a cochlear implant," said Mia, adding that the family is very grateful for all the support and generosity showered on them.

In support of raising funds for Neave, Mark also ran the Safari half marathon in May, which was his first official run.

"He ran it in 1 hour, 47 minutes, which surpassed his expectations and ours! We almost missed him finishing because he ran so quickly. We are very proud of him."

Mia recounted a special moment following the race.

"Neave was obviously particularly impressed and decided to show this by saying 'Dadadada' on that same day. This made dad's day!"

Watch the video of Neave saying 'Dadadada'

"This is also a big moment for us because Neave is starting to say new sounds, which is important for her to develop spoken language."

Although a lot of hard work lies ahead, the Barrett’s are eagerly looking forward to those first words.

Also read:

The gift of hearing

Types of hearing loss

Illegal hearing aids 'dangerous'

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