Llais i Heti O'r Galon


Llais i Heti

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-Every day is different with Heti.

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-She makes us smile.

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-She can walk,

-she can laugh, she can cry.

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-She's no different from anyone else.

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-Some people still say, "Poor thing."

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-But she's a real madam, just like

-any other five-year-old girl.

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-There's no need

-for people to pity her at all.

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-A Voice for Heti

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-Ty Pica Farm, Horeb,

-Carmarthenshire...

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-..home to Heti and her family.

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-At first glance,

-Heti is no different...

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-..from any other

-five-year-old child.

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-But it became apparent early on...

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-..that there was

-a problem with her hearing.

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-One.

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-Two.

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-We realized almost immediately.

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-They carry out aural

-screening tests for every new-born.

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-She failed

-the first test at the hospital.

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-They said, "Don't worry, we'll

-visit you at home in a fortnight.

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-"Perhaps there's

-a build-up of mucous in her ears."

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-They tested her

-when she was a fortnight old...

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-..and she failed that test too.

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-I started thinking,

-'What's going on here?'

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-A week later...

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-..it was confirmed

-that Heti was completely deaf.

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-We were shocked and dismayed.

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-It was something you couldn't

-do anything about at the time.

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-You just had to accept it.

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-No-one wants their children

-to have impairments...

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-..especially when they're new-born.

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-Naturally,

-everyone wants a healthy baby...

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-..with no health worries.

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-We were shocked and disappointed

-and got really down at times.

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-Heti? Where's Heti?

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-Where's Gruff?

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-It was hard to deal with

-because we knew nothing.

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-We had to learn sign language.

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-It was like

-learning a new language...

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-..to a child that

-you yourself weren't familiar with.

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-It was like learning French,

-so it was difficult.

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-It was confirmed

-that the conventional treatment...

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-..of a cochlear implant

-wasn't an option for Heti.

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-We went to Cardiff...

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-..where she had

-an MRI scan and a CT scan.

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-The results came back

-and they found she had no nerves...

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-..between her ears and brain,

-which is exceptionally rare.

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-I remember how I felt.

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-I'd hoped that the cochlear implants

-would've worked.

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-Realizing

-that it wasn't an option...

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-..was worse for me...

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-..than finding out initially

-that she was deaf.

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-Heti? Do you want any bread?

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-No? Cheese?

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-No. OK, nothing.

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-Shortly after receiving the news...

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-..Rhys and Elin found out

-about a new treatment called ABI...

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-..or Auditory Brain Implant, a

-pioneering treatment in Manchester.

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-It would involve inserting

-an implant into Heti's brain.

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-A treatment, if successful...

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-..would enable her

-to hear for the first time...

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-..but one which could also be

-life threatening.

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-I didn't want it to begin with...

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-..because it sounded too dangerous.

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-But you were keen for us...

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-..to find out more about it

-before making a decision.

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-So that's what we did.

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-I always think that if you

-don't try, then you'll never know.

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-There was a 50/50 chance -

-it was a dangerous operation.

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-But you try to do the best

-for your child.

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-We went through

-two or three horrible days...

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-..because all we did was watch

-her sleep until she came round.

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-She didn't look well.

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-She'd undergone

-a seven or eight-hour operation.

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-The day of the operation

-was horrible.

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-It's not a nice experience

-thinking back.

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-The op

-took about six or seven hours.

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-I remember seeing the surgeons come

-into the high-dependency unit...

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-..where we were staying,

-and seeing their faces.

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-They were smiling and I thought,

-'Thanks goodness, everything's OK.'

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-I get very emotional about it.

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-It was a major operation

-for someone so small.

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-Yes, she was so small...

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-..and you were

-putting her life in their hands.

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-But we had faith

-in the surgeon, didn't we?

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-He was confident.

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-Heti is the first child in Wales...

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-..to receive this special implant...

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-..and one in only a handful

-of children in Britain.

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-There's a magnet in here.

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-It attaches to the side of her head.

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-Within it is a disc...

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-..very similar to this...

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-..and a much smaller lead than this.

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-On top of that

-is a small electrode...

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-..that's been placed

-on Heti's brainstem.

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-I usually put the lead on first.

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-This dot here

-connects with this dot here...

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-..in case someone forgets

-how it's attached.

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-In the beginning,

-I used to take ages doing this...

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-..but now it's become part of

-getting dressed in the morning.

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-This goes up here, doesn't it, Heti?

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-This goes on her head like that.

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-This part is just something

-to help it stay on her ear.

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-We also put sticky double-sided tape

-on the back...

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-..and then that goes...

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-Put it on!

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-You're being cheeky! Typical!

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-Come on, put it on.

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-You monkey!

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-That's supposed to go

-on the side of her head.

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-It astounds me...

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-..when I get reports

-back from school...

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-..saying what she's done or said.

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-Every day is different with Heti.

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-She makes us smile, don't you, Hets?

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-The operation was a major success...

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-..and Heti was able to hear.

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-Her communication skills

-needed to be developed...

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-..at school.

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-Where's your coat?

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-No?

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-Look, it's Michael. Hello.

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-She's been in school

-for a year and a half.

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-She started sooner than expected...

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-..because

-there was room at the unit.

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-She's very happy there. It's

-made a world of difference to her.

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-Come on then. Quick, Dadi!

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-Heti travels to Parcyrhun

-Primary School in Ammanford....

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-..where there's

-a special unit for deaf children.

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-Off you go, Heti. Let's see

-what number Heti's going to choose.

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-Which one, I wonder?

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-Heti's fully at home here...

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-..and her speech

-is developing well...

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-..which is a comfort

-to Elin and Rhys.

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-Come and stand here.

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-Why are you feeling like a number

-10? You're obviously very happy.

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-Because it was your birthday.

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-How old are you? How old?

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-Five. Good girl. OK.

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-She's no different to us.

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-She can hear and she only hears what

-she wants to hear sometimes too!

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-If she doesn't want to hear...

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-..she pulls the magnet off herself.

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-She'll clip it back on sometimes...

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-..but she uses it

-to her advantage, to be honest.

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-She does what she wants with it.

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-Before she had it, she could've

-stood next to a jumbo jet...

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-..and she wouldn't

-have heard a thing.

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-Without her implant,

-she hears nothing.

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-When she's wearing the device,

-she hears 30 decibels...

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-..which is staggering.

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-It's like loud whispering -

-that's how they describe it.

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-It's astounding.

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-She can hear the required amount

-of decibels to hear speech.

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-Duck. Duck. Good girl.

-Good listening.

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-She has the ability

-to develop her speech.

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-That's incredible because

-when she first had the implant...

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-..the doctor said,

-"What are your expectations?"

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-We said we wanted her

-to hear environmental noise.

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-He said, "You've got the right

-attitude because I can't promise...

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-"..that she'll hear

-anything more than that."

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-She passed that stage a while ago.

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-Anything she hears on top of that

-is a bonus, really.

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-Sheep.

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-Hello!

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-Heti's the first child

-that we know of in Wales...

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-..to have this hearing device.

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-It's been

-a learning curve for us all.

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-She's surpassed our expectations

-with environmental sounds.

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-I think she's got places to go.

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-We've reached one milestone,

-we'll go to the next one.

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-We're always looking how to move on.

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-What any child needs in the base,

-that child will have.

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-Heti is special,

-as they all are here.

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-They all have

-their tailor-made curriculum...

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-..to whatever they need,

-as you can see.

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-Shall we do it again or not?

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-Shall we do it again or not?

-

-No.

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-Do you want to do something

-different? What do you want to do?

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-Would you like to get a book?

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-Yes. Pardon?

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-Yes, please.

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-Go and get a book. Go and get one.

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-Delyth Evans is

-a peripatetic teacher of the deaf.

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-She has also been supportive

-to Heti and her family...

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-..and was present

-in the early sessions...

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-..to assess how much Heti

-could hear with the implant.

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-The therapist told Elin,

-"We're going to turn it on...

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-"..to see if Heti responds."

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-I remember looking at the audiology

-man, thinking, 'Will it work?'

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-We tried it and waited.

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-He turned it on

-and the first thing Heti did...

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-..was turn to look

-where the sound was coming from.

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-It was a wailing siren

-and she turned towards it.

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-It was lovely to see because

-it had never happened before.

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-It was lovely to see, I have to say.

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-It was an unforgettable day

-in my career.

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-Delyth, the teacher of the deaf...

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-..took me to the unit

-at Ysgol Parcyrhun...

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-..when Heti

-was only a couple of months old.

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-It made

-a world of difference to me...

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-..to see deaf children

-behaving normally...

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-..like every other child.

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-There was

-another there like Heti...

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-..who had no nerves

-between her ears and brain.

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-Just seeing her

-being completely normal...

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-..was of great comfort to me.

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-.

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-Three years ago, Heti

-underwent revolutionary surgery...

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-..to insert

-an implant in her brain...

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-..to enable her

-to hear for the first time.

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-It was a difficult decision

-for her parents.

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-It was a big decision to make.

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-Some people

-might question our decision...

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-..and wonder why we didn't let Heti

-decide for herself when she's older.

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-But it would've been

-too late by then.

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-The doctor in Manchester...

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-..said she was

-an ideal candidate to have it...

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-..because she had no other problems,

-no special educational needs.

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-To get the best out of the implant,

-she needed it before she was two.

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-Heti now had partial hearing.

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-A remarkable fact for a child

-who was born completely deaf.

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-The next challenge

-was to develop her speech skills...

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-..at a specialist centre

-near Oxford.

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-We come here once every fortnight.

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-We've been coming here regularly

-for just over a year.

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-It's made such a difference...

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-..to the way

-Heti listens and hears...

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-..and makes sense of the sounds

-she can hear with the implant.

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-It's been incredible.

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-It's been incredible.

-

-Shall we get a book about a shark?

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-It's a journey of

-almost four hours by car one way...

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-..that we make every fortnight.

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-It means taking a day off work

-for Rhys or myself.

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-My mother or Rhys' mother comes to

-keep Heti company in the back seat.

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-It takes a lot of effort...

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-..coupled with

-the financial cost, of course.

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-Do you want Mami to do it?

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-Ow! Ow!

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-Rub, rub. Are you rubbing it?

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-They offer

-specialist speech therapy...

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-..to the children at this unit...

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-..which is a new approach

-to teaching children...

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-..instead of the usual

-speech therapy given at home.

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-They use specific techniques...

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-..to get the child to listen

-and use the hearing they have...

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-..to communicate

-and do all kinds of things...

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-..without having to sign.

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-..and the fish,

-and they all say, "No, no, no."

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-No, no, no, no.

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-"We don't want to play.

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-"You're too scary."

-But, Heti, look. What's that?

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-Over 90% of children born deaf

-have hearing parents.

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-What we need to do is furnish

-parents with all the information...

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-..about possible different

-communication avenues...

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-..and to also furnish them

-with the outcomes.

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-I got it out.

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-The first job we have to do

-is engage Heti's listening.

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-So we have to motivate her...

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-..to find something interesting

-in the sound...

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-..that she's perceiving

-through her technology.

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-Mam-gu has got no play dough.

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-We want some play dough, Sarah.

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-Hold out your hand, Mam-gu.

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-Can we have some play dough, please?

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-You can,

-but that's quite a long sentence!

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-Just hold out your hand

-and say play dough.

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-Play dough, please.

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-Play dough, please.

-

-You're so polite.

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-No please and thank-yous

-in here, Mam!

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-Play dough.

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-The reason is because Heti

-is at that stage of listening...

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-..where the end of the sentence...

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-..is going to be

-the thing she listens to best.

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-So if you say, "Play dough, please,"

-she'll listen to the please.

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-If you hold your hand

-and give the label...

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-..your gesture

-tells me you want it...

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-..your mouth tells me the thing.

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-Play dough.

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-Because so few children

-have the same implant as Heti...

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-..it was difficult to know whether

-she'd pick up a second language.

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-The school is English-speaking

-as well as this centre...

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-..so we decided that we

-would speak more English to her.

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-It was a tough decision to take...

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-..because we're

-a Welsh-speaking family...

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-..and I work

-through the medium of Welsh.

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-It was a difficult decision...

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-..but everyone understands

-it's for Heti's benefit.

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-Hopefully she'll be able to pick up

-a second language. We don't know.

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-Ah!

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-Push it down. Push it down.

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-The likely outcome for Heti is that

-her auditory brainstem implant...

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-..is going to be

-an aid to her lip reading...

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-..and her understanding of

-spoken speech through visual cues...

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-..and probably

-some signed language as well.

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-So it's a boost to her,

-to her understanding.

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-I love working with Heti.

-She's an amazing little girl.

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-She has great communicative ability,

-in any case...

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-..and she's a great little thinker.

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-Dadi? Yes?

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-Seeing Heti before this

-and how she is now...

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-..goes to show that it's worth it.

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-She's become a lot more vocal.

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-She hears a lot more.

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-She understands me telling her,

-"Where's Dolly?"

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-She fetches the dolly and

-fetches her shoes if you ask her.

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-She brushes her teeth

-and little things like that.

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-She's talking,

-she says Mami, Dadi, Gruff.

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-She's starting to say

-simple little things too.

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-Before this, she didn't say a word.

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-We're hoping

-she'll improve even more.

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-It's definitely worth it,

-without a doubt.

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-Despite the benefits

-of the therapy for Heti...

0:21:170:21:21

-..sessions are costly.

0:21:210:21:24

-Over the past year,

-Elin and Rhys' family and friends...

0:21:240:21:28

-..have come together to raise funds.

0:21:290:21:31

-It all started a year ago...

0:21:310:21:33

-..when my brother-in-law

-ran the Snowdonia Marathon...

0:21:340:21:37

-..and raised money for Heti.

0:21:380:21:40

-He raised 4,000,

-which was astounding.

0:21:400:21:43

-Many things

-have happened since then.

0:21:430:21:45

-We held an auction and lots of local

-organisations have donated money.

0:21:460:21:50

-It means a lot to us as a family

-that people think so much of Heti.

0:21:510:21:55

-I have to say, she's very lucky.

0:21:550:21:58

-Come on, Rach! Well done!

0:21:590:22:01

-It's this noisy environment which

-continues to pose problems for Heti.

0:22:050:22:10

-She's not too keen.

-She's flicked the device off now.

0:22:130:22:17

-There's too much noise here for her.

0:22:170:22:19

-She doesn't like being

-in a noisy environment like this...

0:22:200:22:25

-..with lots of shouting

-and different sounds.

0:22:250:22:29

-But in the silence

-at home and at school...

0:22:290:22:32

-..she enjoys the fact that she

-can hear and makes the most of it.

0:22:320:22:36

-We're pleased she's had the implant.

0:22:360:22:39

-It was good.

0:22:400:22:42

-Was it good? How on earth

-did you get up that wall?

0:22:420:22:46

-Hiya, Heti. Are you OK?

0:22:460:22:48

-Hiya, Heti. Are you OK?

-

-She's good.

0:22:480:22:49

-She'll be doing it with us

-once she's old enough!

0:22:500:22:52

-Elin and Rhys have given

-their daughter Heti a chance...

0:22:570:23:00

-..to hear the world around her...

0:23:010:23:03

-..and they're also determined

-that she will lead a normal life.

0:23:030:23:07

-When Heti's

-much older than she is now...

0:23:100:23:14

-..she'll be able to speak better.

0:23:140:23:17

-And understand things.

-That's what's important.

0:23:170:23:21

-She needs to mix with children.

0:23:210:23:23

-Though she's at Parcyrhun

-and we're in Carmarthen...

0:23:240:23:28

-..lots of her friends are up there.

0:23:280:23:30

-She's no different

-from anyone else now.

0:23:310:23:34

-She has her own personality

-and I wouldn't change her...

0:23:340:23:39

-..because that's the way she is.

0:23:390:23:41

-That's the personality

-we're used to.

0:23:420:23:44

-I wouldn't change her for the world.

0:23:450:23:47

-She's a unique character.

0:23:490:23:52

-She's very determined...

0:23:520:23:54

-..and I think that's a good thing...

0:23:540:23:57

-..because

-she's going to encounter problems.

0:23:570:24:00

-The fact she's determined will stand

-her in good stead for the future.

0:24:000:24:07

-But she's also very sweet.

0:24:070:24:10

-She's a real character.

0:24:140:24:16

-Seeing her and Gruff together

-is great. We're very lucky.

0:24:160:24:21

-.

0:24:260:24:27

-For information

-about organizations and resources...

0:24:270:24:30

-..that advise and offer assistance

-to the deaf and hard of hearing...

0:24:310:24:35

-..visit our website -

-s4c.co.uk/help

0:24:350:24:37

-.

0:24:380:24:39

-S4C Subtitles by Adnod Cyf.

0:24:460:24:48

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0:24:480:24:49

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