Out of Control

Producers: Stephen Taylor and Hugh Nailon

Brace yourself. You're in for a very confronting experience.

One second she's a sweet 16-year-old, the next Bianca Saez is a violent, foul-mouthed monster, a girl seemingly possessed.

Bianca has Tourettes Syndrome, the worst case doctors have ever seen.

Uncontrollable fits, bizarre tics, tirades of abuse.

By the time Tara Brown met her, Bianca was at wit's end, so too her long-suffering family.

But then came hope, radical brain surgery, an amazing operation that could help Bianca win back her life.

We should warn you, some viewers might find Bianca's language and behaviour offensive.

Special features:

WEBCHAT: Read Sunday night's webchat with Bianca's neurosurgeon, Professor Peter Silburn.

Additional contacts:

Bianca's operation was performed at St Andrews War Memorial Hospital in Brisbane.

Full transcript:

BIANCA SAEZ: What am I doing?

TARA BROWN: This is the awful, confronting reality of Tourette Syndrome for Bianca Saez. This 16-year-old has the most severe case of Tourette's in Australia and it's brutal watching her lose the struggle for self control. First diagnosed with an innocent blinking tic when she was three, since then, Bianca has got progressively worse, unable to suppress her violent outbursts or her language. Even with her parents John and Lea trying to restrain her tics nothing can prepare you for meeting this troubled young woman. The lady I've been waiting to meet. This is an important day. The eve of a ground-breaking brain operation that is Bianca's only hope of a normal life. But Bianca also wants a chance to explain the cruelty of suffering Tourette's and why it makes her hit out and swear the way she does. It's a tough and challenging chat for all of us.

BIANCA SAEZ: I want to get rid of my tics, and have a better life. Oh, sorry mum.

LEA SAEZ: It's ok, it's all right darling.

TARA BROWN: So how do you explain... Can you explain right now why you're doing that?

BIANCA SAEZ: No, ah well it's a chemical... ..it's a chemical imbalance in the brain and it causes you to do sudden movements or yell out things that you cant have no control over, You don't have any control over it.

TARA BROWN: Do you know why you want to hit your mum?

BIANCA SAEZ: I don't. I hate hitting my mum. I hate hitting everybody. If I had one wish I would take that away.

TARA BROWN: Of course. And do you know why you want to hurt yourself?

BIANCA SAEZ: I get a feeling in my body and I have to hit it to make it go away.

TARA BROWN: What's that feeling like?

BIANCA SAEZ: I can't explain it. It's not like a normal feeling, it's just I just can't explain it.

TARA BROWN: How often do you guys come up to visit? Is it every two weeks? 18 months ago, John and Lea made the heartbreaking decision to send their daughter to live at this adolescent mental health centre in Brisbane. Bianca can no longer attend normal school or do most things teenagers do. But Tourette's hasn't squashed her bubbly personality.

BIANCA SAEZ: Do you want a radish?

TARA BROWN: I'd love one, thank you.

BIANCA SAEZ: I'll give you a big one, you're special.

TARA BROWN: Bianca's more than happy to show off the centre's vegie patch.

BIANCA SAEZ: This is where we grow plants to put in the ground.

TARA BROWN: Oh, the seedlings.

BIANCA SAEZ: Yeah. Just watch out for the Tourette's swing. Sorry.

TARA BROWN: That's ok. Tell me, as parents, what its like to have your eldest child, very much still a girl, sent away from home?

LEA SAEZ: It's devastating!

JOHN SAEZ: Ah well, I'm just a simple bloke. I just wanna have me family together, it's hard.

TARA BROWN: Yeah, is part of it the loss of control that you know you just can't do anything?

JOHN SAEZ: It's impossible. We can't do nothin'.

LEA SAEZ: It is. It's like having your hands tied. There's nothing we can do to help her.

JOHN SAEZ: Tara, welcome to our home.

TARA BROWN: Thank you. A home under siege. For this proud Queensland cop, the impact of living with Tourette's is most easily understood in the battered family home. Every door, every wall has Bianca's mark. This house has been patched up many times but now John and Lea are resorting to reinforcing it with steel and the bathroom has to be seen to be believed.

LEA SAEZ: So, you can see this is where most of her frustration happens.

TARA BROWN: Gosh! Straight through the tiles?

LEA SAEZ: Straight through the tiles!

TARA BROWN: It looks like you've had a poltergeist through here.

LEA SAEZ: We've considered an exorcism.

JOHN SAEZ: Yeah, we've discussed that.

TARA BROWN: It's a great thing about this couple that they can still laugh but Bianca's bedroom is a reminder of all they've lost. I guess you really want her home though?

LEA SAEZ: It's hard not having her here.

TARA BROWN: It would be incredibly difficult.

LEA SAEZ: It is.

TARA BROWN: can you understand why you can't live at home?

BIANCA SAEZ: Sorry, yeah, because I guess all my tics frustrating me so much and so I guess just going home at the moment will be too hard on everybody. So yeah.

TARA BROWN: I've read somewhere if you try... did you just break the table? Look at that! I'll just keep that over here. Oops. As many as one in 200 people have Tourette's but very few have the severe symptoms Bianca suffers. What's so confounding about this neurological disorder is when the tics can and can't be controlled. Putting on ice skates is almost impossible but on the ice, playing with her brother Tim, Bianca is a different girl. And for a brief moment this is a happy family. I guess Tourette's is so hard to understand you know you can ice skate, and you can dance. How can you do that if you've got these tics, these uncontrollable tics?

BIANCA SAEZ: I guess if I can set my mind to something and really focus on it I can do it because it makes me... what's the word... Sorry.

LEA SAEZ: It's ok. I think it's the love of what she's doing. She, she...

BIANCA SAEZ: It distracts my... it distracts the thought of my tics and I focus on something else. Sorry mummy.

LEA SAEZ: Anything that comes from within I think. The ice skating, the dancing, the singing all comes from her heart.

TARA BROWN: Lea what is it that's really upsetting you at this moment?

LEA SAEZ: Seeing her like this. It's the last thing a parent wants is for their perfect child... when I had Bianca I just looked at her and couldn't believe that something so perfect... I made that. And then for something to go wrong is a nightmare. I never want that for my child and I love her so much.

TARA BROWN: At the Saez family's lowest point they were finally given hope by this man. PETER OVERTON: This is how Jeff Matovic lived his life - Trapped in a body he could not control.

TARA BROWN: Two months ago Peter Overton reported the story of American, Jeff Matovic, a sufferer of severe Tourette's who underwent an operation called deep brain stimulation. It changed his life from this - DOCTOR'S VOICE: How about repeating - "it is a sunny day in Cleveland Ohio?"

JEFF MATOVIC: It is... ..a sunny day... ..in Cleveland Ohio.

TARA BROWN: To this -

JEFF MATOVIC: It's a sunny day in Cleveland.

TARA BROWN: Bianca saw Jeff's story, saw his incredible transformation, and asked if a deep brain stimulation operation might work for her.

BIANCA SAEZ: I just cried and I was so amazed and I rung up mum and I said - "Mummy could they do that for me?" I was, I just, I want to get better so much. I've gone through so much, I just hope I get a break.

TARA BROWN: When you first saw her go through one of her tics how did you react?

PROFESSOR PETER SILBURN: I've got to say that when I saw that I just, the first thing that came into my mind was, "We've got to fix this girl." The big thing we're going to aim for is the motor tics.

TARA BROWN: Brisbane Neurologist, Professor Peter Silburn has done more than 300 brain stimulation operations but mostly on patients with Parkinsons Disease never on someone with Tourette's. In fact, the surgery has never been done before in Australia. How risky an operation is it?

PROFESSOR PETER SILBURN: Always risky, anything to do with the brain is risky. You can bleed, you can stroke, you can die.

TARA BROWN: This is how the deep brain stimulation will work. Two electrodes will be placed deep in Bianca's brain where faulty neurones cause the Tourette's. The probes are connected to a battery which will be put in Bianca's side. The electrodes basically reset the misbehaving brain cells and if it all goes to plan most of the tics should disappear.

PROFESSOR PETER SILBURN: There's a part of the brain that is not in harmony and so we have to get down to that area and re-harmonise it and we do that by out-pulsing it with electricity.

TARA BROWN: So now tell me what the doctors have told you about what to expect from this operation.

BIANCA SAEZ: They're fairly keen on it's going to be successful but there's also a thing that might happen, that it might not get any better, too.

TARA BROWN: How much does that worry you?

BIANCA SAEZ: A lot, because I've... I'm dreaming of getting better and if I go through all this and nothing happens I'll be devastated. I wouldn't know what to do. I just pray to God this works 'cause if it doesn't, there's nothing else.

TARA BROWN: It's the big day at St Andrews War Memorial Hospital in Brisbane. Everyone here is calling it B-day, Bianca's Day. The first step is an MRI to map the brain so they know exactly where to put the probes. Are you excited at this point or anxious?

PROFESSOR PETER SILBURN: We're on a mission, we're on a mission here to stay focussed.

TARA BROWN: In the operating theatre this moment could be the difference between a normal or wretched life for Bianca. It's surgery where precision means everything. The man with the steady hands is Neurosurgeon Dr Terry Coyne. He's placing the first electrode in Bianca's brain.

PROFESSOR PETER SILBURN: And there it goes. We're in the zone.

TARA BROWN: They can now read Bianca's brain activity on this computer. Professor Silburn's job is to make the call when the probe is in the right spot. So, how deep in the brain are you now?

PROFESSOR PETER SILBURN: We're in there, baby.

TARA BROWN: You're in there?

PROFESSOR PETER SILBURN: We're in here, this deep.

TARA BROWN: This procedure will take three hours but for waiting family and friends it's never ending. This emotion is very close to the surface, John.

JOHN SAEZ: It is. It is.

LEA SAEZ: Well, she sleeps like an angel.

LEA SAEZ: She does. She looks like an angel when she's asleep too.

TARA BROWN: Back in surgery, doctors are making sure they haven't hit Bianca's optical nerve centre or any other delicate areas. It looks like the probe is exactly where it should be.

PROFESSOR PETER SILBURN: So, we're happy.

TARA BROWN: You're happy?

PROFESSOR PETER SILBURN: We're happy, that's right. We just have to do the other side now.

TARA BROWN: It's just gone lunch and the operation is over. Bianca is now moved to Intensive Care. Doctors turn on her battery pack to power the electrodes but unlike many Parkinsons patients who have deep brain stimulation the success for those with Tourette's is not immediate. Even so, Professor Silburn is confident.

PROFESSOR PETER SILBURN: So, so far so good. It's all going in the right direction, alright. The mission is on target.

TARA BROWN: Do you see a day when Bianca can live at home again?

PROFESSOR PETER SILBURN: That would be a huge win, actually. To see, mm, that would be good, to see that girl back at home.

TARA BROWN: Why does that make you emotional?

PROFESSOR PETER SILBURN: I don't know, cause we can do it and we should do it, I think.

TARA BROWN: It's the next morning and Bianca is feeling a little sore and sorry from the operation but the tics are already improving.

BIANCA SAEZ: My head's aching.

PROFESSOR PETER SILBURN: No, it will be fine.

TARA BROWN: But just a week later -

BIANCA SAEZ: I just keep walking and running and twirling and stuff. I love it.

TARA BROWN: You love it. Look at Bianca now. After brain surgery she's gone from a girl possessed... ..to a sweet 16-year-old who can now walk without hitting and talk without swearing.

BIANCA SAEZ: It's so funny and his dance is this.

TARA BROWN: So he thinks he's groovy but he's not?

BIANCA SAEZ: No, he's groovy. He dances like Elvis. I'm so grateful for this. I can't believe how much I'm grateful for having this operation because it's changed my whole entire life and I'm so proud of myself for doing it.

TARA BROWN: You should be, yeah. Bianca says she feels 95% better already and clearly, her family does too. You feel like a cloud has lifted off you guys? JOHN SAEZ and

LEA SAEZ: Yes.

TARA BROWN: Is that how it feels?

LEA SAEZ: Yes, I just think back to last week and all the tears we shed and this week we've done nothing but smile. I think she's like a butterfly coming out of the cocoon.

PROFESSOR PETER SILBURN: Are you good?

BIANCA SAEZ: Yeah.

TARA BROWN: Neurologist Peter Silburn, is also thrilled with Bianca's progress. She still has mild ticcing but he hopes it will disappear within the next month.

PROFESSOR PETER SILBURN: Our whole team has seen a young girl gone from getting progressively worse with multiple medications being institutionalised for a couple of years and now the family unit is back together.

TARA BROWN: But a very polite Bianca Saez wants the final word and for all she's been through she deserves it.

BIANCA SAEZ: I just want to say to all the other people out there with Tourette's that life may be hard sometimes but you put your head up and give it a go and just keep following through because that's what I want to do and hopefully I will live my life to the fullest.

TARA BROWN: I bet you you will. Well done, thank you so much Bianca.

BIANCA SAEZ: It's ok.