Resounding victory for Lily

From: The Scotsman, UK - Jun 28, 2004

Julia Horton

'I THINK I'll have a knickerbocker glory," eight-year-old Lily Davidson grins in answer to my question, savouring every syllable as if she could taste them.

Her excited chatter adds to the hubbub in Luca's ice-cream parlour at Holy Corner where dozens of other schoolchildren are also eagerly debating which end-of-term treats to order.

What sets Lily's utterance apart and makes it astounding, however, is that she is completely deaf.

The only clue to her disability is a discrete maroon earpiece matching her school blazer which could easily pass for a hair accessory unless you looked more closely.

It is actually a cochlear implant, however, which has revolutionised the little girl's life - effectively allowing her to hear and speak like any other child.

Her mother, Carolyn, has agreed to tell Lily's uplifting story to highlight the bright future which deaf children can enjoy.

The start of Lily's life was anything but bright, as Carolyn recalls: "Lily was born 26 weeks premature, weighing just 1lb 10oz. She was the only survivor of triplets [conceived through IVF] and she was desperately ill.

"She had lots of complications including a condition that stopped her blood clotting properly and can cause cerebral palsy and paralysis, and a fatal fungal infection of the blood.

"Doctors [at the Simpson's in Edinburgh] gave her a combination of strong drugs which were ototoxic - which means poisonous to the ears.

"They had to give them to her to save her life but one of the things they warned us about was that she might be deaf [because they could damage the cochlear]," says Carolyn.

With the threat of Lily's death looming large, Carolyn and her wine merchant husband Les, who are both in their 40s, had more than enough to worry about.

For six months they were put through the mill as their tiny baby daughter suffered numerous brain haemorrhages and underwent heart and kidney surgery. She also had to be brought back to life after stopping breathing.

Incredibly she pulled through and her overjoyed parents took her home to Nivensknowe Road, outside Loanhead, where they run a guesthouse.

With hindsight, Carolyn admits that she knew something was still not right, but she did not want to admit to herself that her baby girl might have any other problems.

At the age of eight months, however, a routine check-up revealed Lily was deaf.

"I had always thought something was not right still but at the same time I was somehow convinced she could hear," Carolyn says.

Being told Lily was deaf sent her reeling: "I remember asking the doctor how loud I had to shout for her to hear me - I just couldn't take it in. It was as if someone took my baby away from me that day and gave me a different baby. My daughter's future was taken away. It was just awful."

Within 24 hours, the family had been told that it might be possible to fit Lily with a device known as a cochlear implant which could transform her life. But from the word go doctors stressed that there were no guarantees that it would work.

And to qualify for the implant, Lily had to try more conventional hearing aids first to see if they were good enough. For months they persevered with the hearing aids, but they did not allow Lily to hear. Worried that her daughter was missing out on language and communication skills, Carolyn decided Lily should be taught sign language.

The whole family, including Lily's older brother Max, now ten, learned to sign, allowing Lily to be part of the family.

When she was nearly three years old, Lily was finally accepted for a cochlear implant, and the operation was duly carried out at a specialist centre at St Mary's Hospital, Manchester.

While traditional hearing aids work by amplifying sound and then passing it through the damaged cochlear, cochlear implants change sound into electrical impulses which are transmitted by electrodes inserted into the ear, bypassing the damaged cochlear and being sent straight to the hearing nerve.

The gadget consists of a microphone and a tiny computer processor, which fit around the patient's ear like an ordinary hearing aid. A magnet connected to the earpiece is attracted to a metal plate which has been implanted into the side of the head and is attached to 22 electrodes in the ear.

After the operation, Lily had to wait a month for the wounds to heal before the gadget could be "tuned" by doctors to suit her individual responses, and then switched on.

It was March 1999.

THE family's elation was summed up best by Max's reaction. Carolyn says: "I will never forget the look on my son's face when we returned from the 'switch-on'. In his eight Christmases and birthdays I have never witnessed such joy and excitement. He ran up to the car and said: 'Can Lily hear now?'."

Since then, Lily's progress has been swift as she has adapted her language skills from learning sign to speech.

After one week Lily could hear a knock at the door. After a month her head whipped round like an ordinary hearing child when a drum was banged.

But the best thing about the implant is that it has "let Lily's personality come out. It was so good to have her in our world [hearing world]".

Lily is a keen violinist, eager to follow in her brother's footsteps by joining the school orchestra. "She started playing when she was six," says Carolyn. "She really enjoys it and she is desperate to be in the school orchestra."

Lily has not only caught up with her peers at George Watson's school in Edinburgh since she started there, she is now in the top groups in every subject.

Interestingly, language is one of her best subjects, as Carolyn proudly explains: "Out of 115 children in primary two at Watson's only eight were put forward for level B language this year. Lily was one of them."

Despite the implant, her hearing is not perfect. She finds transmitted sound such as music from a personal stereo or mobile phones hard to hear. And it has not restored her hearing. When she takes the device off at night she cannot hear anything - a sensation she apparently quite likes.

Watson's has done a great deal to help Lily progress, including installing a special sound-field system with speakers in her classroom. The teacher wears a Madonna-style headset helping Lily hear more clearly.

In the future it is hoped Lily will have a mobile system which she can take with her to secondary school and university.

And one day her mother hopes that doctors will be able to repair the damage to the ear which does not have the implant - allowing her to hear normally 24 hours a day.

As she says: "Thirty years ago she would not have been here because there was no IVF. Ten years ago they probably could not have saved her life.

"In another 30 years I hope they will be able to repair the damage to her other ear."

©2004 Scotsman.com