How little Evie was released from a world of silence

From broken bones to new beginnings

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Wearing party hats and big smiles, the children at the dinner table start shuffling in their seats, waving their arms and singing to the sounds on the radio.

As they belt out popular Christmas songs by the likes of Wizzard and Slade, their little sister Evie begins dancing too, her curly locks bobbing and her face breaking into a big grin.

The Small family (l-r) Harrison (13), Edward (9), dad David, mum Emily, Evie (2), Matthew (12) and Amelia (12), at home  in Horndean. Picture: Allan Hutchings (13928-038)

The Small family (l-r) Harrison (13), Edward (9), dad David, mum Emily, Evie (2), Matthew (12) and Amelia (12), at home in Horndean. Picture: Allan Hutchings (13928-038)

This festive scene has been captured on video and is one the Small family love to watch. But it’s also a sight that, at the time, filled mum Emily with sadness as well as pleasure.

Toddler Evie couldn’t hear the music but was joyfully copying her older brothers’ and sister’s movements.

Born in September 2010 without any hearing nerves between her ears and brain, Evie had never heard a sound.

Her mum Emily explains: ‘She has always done that, mirrored people’s movements. Because of her condition, she’s very visual.

‘We’ve been watching skiing on the telly and she’s put some books on the floor and pretended to ski on them with a spatula and wooden spoon.’

At Christmas 2011, Emily laughed but also felt a surge of sorrow as she watched her 15-month-old daughter bopping around to Slade.

‘She would do that a lot, dance around and even put headphones on. She was enjoying herself but really had no idea what she was doing.’

But as Noddy Holder yelled ‘Look to the future now, it’s only just begun’, the words had never been so apt.

Just over six months later little Evie, from Horndean, would be undergoing a pioneering operation in Italy that would give her the gift of hearing.

Evie’s condition has been likened to having a stereo and speaker but no cables to connect them.

The operation involved fitting her with an Auditory Brainstem Implant – a bionic ear – which would help her process hearing,

Only a few specialist surgeons in the world can do this and it needed to happen before she was two as the brain loses flexibility.

So family, friends, fellow worshippers at Holy Trinity Church, Blendworth and other supporters raised almost £50,000 for the operation and follow-up procedures.

Now the little girl has moved from a world of silence to one filled with strange but wonderful sounds.

The big test came when the device was switched on, but the results were everything that family had hoped for.

A video shows Evie turning around when a therapist bangs a drum and Emily’s face breaking into a look of amazement and joy.

She says: ‘To see Evie turn to noise was breathtaking, the most incredible thing I had ever witnessed.’

Another moment caught on video is Evie saying ‘more’ when she is offered chocolate.

In just a few months she is beginning to speak when before the operation she was silent. ‘Now you can hear her babbling away to herself as she plays – it’s lovely’ says Emily.

‘She said ‘‘mama’’ quite early on. She is also trying ‘‘quack quack’’.’

The grateful mum recalls another moment before the operation when she was at a cathedral carol concert.

‘The music was heavenly. But in my depths I felt such a sense of loss thinking that my little girl would never experience this.

‘I tried to focus on how lucky we were in so many ways but as a mother I would gladly have given her my hearing if that were possible.’

Now Evie’s family and the congregation at Holy Trinity are thrilled by the two-year-old’s reactions to the hymns at church.

During the Smalls’ first service after returning from Italy, no-one doubted Evie could hear the music.

‘As the organ started she looked and pointed. Now she makes noises, trying to join in,’ says Emily.

Two-year-old Evie has Goldenhar syndrome, which means she has no hearing or balance nerves and only very small facial nerves.

‘Finding out was a shock. We were thankful that she was here and well, but I didn’t know how to tell the other children that she couldn’t hear the stories and songs they had made up for her,’ says Emily. ‘And I kept thinking ‘‘she’ll never hear me say I love you’’.’

The family began to learn British Sign Language and Evie will always use this as her second language.

Then they heard about the possibility of an operation and flew to Italy to meet top surgeon Professor Vittorio Colletti.

‘I remember he came in and stroked Emily’s cheek and then Evie’s,’ says David.‘I admit I thought ‘‘okay. he’s Italian but let’s get on with it’’. Then he stroked my cheek. He said it was the best way to get Evie to trust him.’

The family were overwhelmed by the fundraising. ‘A 94-year-old sent a cheque saying they knew what it was like to be deaf and someone sent a St Christopher for the journey,’ recalls David.

For David and Emily, one of the most moving moments was watching Checkatrade founder Kevin Byrne doing a treadmill marathon.

‘We didn’t realise but he’d broken his collarbone. He was in agony,’ says David. ‘To see someone doing that for your child is amazing.’

Buoyed by support, the family headed to Italy last summer but facing the challenges of the operation was tough. Evie cried when her curls were shaved off and her parents were filled with doubt.

‘I didn’t care if it worked or not at that point. I just wanted my little girl back,’ says David.

Now of course they’re thrilled as Evie can hear sounds as quiet as normal speaking levels.

But there’s still a long road ahead as she must learn to recognise the meaning of noises. Her condition has affected her eyes, spine and heart and she may need operations in the future.

But the toddler is making excellent progress, interacting more and making herself heard at church – even sometimes dancing on the pews.

‘No-one minds how much noise she makes,’ laughs Emily. ‘They love it.’

SPECIALIST PROCEDURE

Evie’s operation was such a specialist procedure that surgeons from all over the world flew to Italy to watch.

There were five other children having the same treatment – from Ecuador, America, Britain and Poland

A tiny electrical device was inserted into the part of the brain that processes hearing. Known as an Auditory Brainstem Implant (ABI), it has been used by adults for many years but operations on children began in the last decade.

The technology is so clever that a microphone around the ear is Bluetooth capable. A phone app can make adjustments when someone walks into a noisy environment to help reduce background sounds.

And people can use the device to answer their phone. ‘Evie will have her own hands-free kit,’ laughs dad David.

PROCESS CALLED ‘MAPPING’

Evie’s parents needed £60,000 for the operation and follow-up visits to Italy.

The implant in Evie’s brain has to be regularly programmed as some of the electrodes may stimulate other parts of the brain and cause tingling or even pain.

This process is called ‘mapping’ and takes place over the weeks and months after an operation and then annually.

The little girl is also undergoing extensive speech and hearing therapy and will be heading to the US for some specialist help.

After friends, family and supporters began fundraising, the Small family set up the Hope For Hearing website.

Once they have raised enough for Evie, their intention is to start raising money for other children with hearing problems.

For information on the ongoing fundraising drive, visit hopeforhearing.co.uk.