The Girl with Two Hearts

Mountain Ash, a valleys town much like any other.

But this is the setting for an extraordinary story that has

changed the world of medicine.

This is Hannah. She was born with a broken heart.

Broken not by love or by loss, her heart was damaged and she was dying.

For the past 19 years, she's been fighting for her life.

This year, she will find out if she's been cured.

Her childhood battle was filmed on home video.

Told by her parents and the doctor who kept her alive,

this is Hannah's story of survival against all odds

that led to a ground-breaking discovery that's given hope

to millions. This is Hannah Clarke, the girl with two hearts.

At the Clark family home, there's rarely a quiet moment.

Hannah lives with her parents, her sister Amy

She's a busy young woman and lives life to the full,

but it wasn't always like this.

Soon after she was born, it was a very different story.

BABY CRIES

It meant a lot for me to start a family.

I really wanted to start a family.

There was three goals. I wanted to learn to drive,

go on an aeroplane and have a child.

So excited and yet worrying as well.

And you don't know how your body's going to react.

It was obviously the best time of my life when I was having a child.

It was the fittest I've ever felt.

It makes you change your attitude in life when you become a father.

And then you worry about them when they get born.

Yeah. It's like you always want to make sure they're healthy

and nothing wrong with them when they're born.

No defects or nothing, you know.

You just want them normal and healthy children.

BABY CRIES

When Hannah was born we seemed to think everything was fine

and everything was OK.

She was just a screaming child baby, that's all.

She kept crying a lot and...

-we thought nothing at the time, did we?

-No.

And then, a couple of months after, she was still screaming, wasn't she?

But the screaming wasn't a cry. It was literally a scream, which, oh...

It was murder.

And I started doubting myself as a mother.

No way did I ever think it was as serious as what she was.

Despite reassurances from their GP that all was well,

the Clark's concerns grew.

As the months went on, it seemed there was little

they could do to ease their daughter's pain.

All the kids used to be there jumping, and she was...

This was before we took her home from the hospital.

Yeah, before we took her to the hospital.

And I said to him, "Oh, just chuck her on the bed.

"Stop her crying. Chuck her on the bed." Didn't I?

You'd be standing on the bed and you'd leave her go,

she'd be bouncing on the bed and she used to love it.

She used to love doing that.

Didn't she?

We took her over there and they did a chest X-ray

and found out she had an enlargement with the heart.

Hannah was the unlucky one in 100,000 children born with

cardiomyopathy.

She had a swollen, struggling heart that could have failed at any time.

When the doctors discovered her rare condition they swung into action.

The doctors there were wheeling her past and I thought,

"Oh, my God. It's Hannah."

They just took her into the side room and it just went haywire, didn't it?

Just went bonkers.

She could have gone any time.

It was a nightmare.

Every minute, every hour was getting worse and worse.

I just stayed with her for a while.

And then she got worse again, didn't she?

There was so much happening, so soon, so quick.

It was just a shock. And they were trying to get blood from her,

and it took them hours to try and find a vein because obviously

the heart is not working as good, so the veins are not as good.

You don't want them to stick needles in your child,

and you could see them screaming and crying and...

It had to be done. You had to be cruel to be kind.

We didn't know how we stood. We didn't...

We didn't know what was happening.

We didn't know if she was going to live or die.

I wouldn't leave her die.

I was determined that I would do everything

I could to keep her alive...

..everything...

and I did.

And then eventually there was talk that...

..she weren't improving, she weren't getting any better.

She still had this problem with the heart - it was still enlarged.

And we needed to be assessed at the Airfield Hospital for...

..the possibility of a heart transplant,

and that's when we realised...

how serious...

..it was going to be.

The transplant would be an extremely delicate

procedure for a baby like Hannah.

And, crucially, not many suitable hearts become available.

Time was running out.

It's really hard to explain. You don't want your child to die,

so you would do anything in the world for your child to live.

I would fly to the moon and back if that's what it would take.

You would do anything. You would give your right arm.

I've often thought at times, "I wish I could give her my heart,"

and she'd live and I wouldn't.

If that would cure her.

I felt that way.

Everything was just going as normal

and we had a phone call from Airfield

saying that we got a transplant...

-SOBBING:

-..waiting for her.

Could we make our way to London, to Airfield?

And we blue lighted all the way to London.

It was at this time a man came into her life who would have a

profound effect on her future.

Professor Sir Magdi Yacoub was born in Egypt where, as a young boy,

he saw his aunt die of heart disease.

Ever since, he's dedicated his life to finding a cure.

Hannah's story is a long one and it started by Hannah being very,

very sick with her heart with dilated cardiomyopathy,

with her pumping chamber failing very rapidly.

And...we didn't have a heart for a long time,

and then she was deteriorating, and we thought she would not last.

Surgeons worked through the night on two-year-old Hannah's tiny body.

Come the early hours, her life saving donor heart was beating.

Operating on such a young child

and knowing that transplanted organs have a limited life span,

Professor Yacoub had attempted a radical new procedure,

leaving Hannah's natural heart in place.

At that time I thought, for several reasons, it would be a good thing...

to use a piggyback heart.

What is a piggyback heart?

It is that you leave the heart in place but use the donor

heart as an assist device, so it pumps alongside the heart.

It was relatively straightforward

in that you use the heart-lung machine to support the heart,

then you join the donor heart to Hannah's heart.

So, the blood, which cannot go into Hannah's heart because there's

massive resistance would go into the donor heart and is pumped out.

So that's, in essence, what it is.

When she came back out of this operation and there were all

these monitors and ventilators and everything you can name,

all these syringe drivers and everything on her,

but we didn't look at them. We were looking at Hannah...

..and she looked good.

She had a nice colour in her skin where she always looked white.

She had colour in her cheeks - looked perfect.

It was a brave and risky operation that pushed the skills

and knowledge of the best surgeons in the world to their limits.

Professor Yacoub came out and took us to the side

and he said that he'd done a piggy back transplant, and I just thought,

"How can you do that? How does that work?"

I said, "You can't do that - put two hearts in there - that's not normal."

- The donor heart itself was much smaller than her heart,

but it was quite adequate to transform her circulation

and get her to survive.

The advantage of having two hearts went beyond

merely keeping Hannah alive.

Professor Yacoub had a hunch that something altogether

ground-breaking could happen.

Hannah's natural heart might mend itself.

OK...

I had in the back of my mind that it might...

That her heart would be given the chance to recover.

There was a small chance, but it actually worked.

As time went by her heart actually started to recover,

and that took a long time.

She shocked people how quick she recovered.

And with her having a piggyback operation her own heart was

still seriously bad, but her donor heart was doing well

and it was like nothing had ever happened.

She was just...

Erm...

-unbelievable, wasn't she?

-Yeah.

About a year and a half after her transplant,

her own heart started to recover

and it got to a stage where it was really, really good.

Not like 100%, but more 80%.

The best it had ever been.

Every time they had new trainee doctors and consultants they would

always ask, if Hannah was there, could they listen to her heartbeat.

And he wouldn't tell them that she had two hearts...

..until they examined her, and then he'd look at them.

And they were sort of looking at him with a bit of doubt to say,

"Well, I can hear two hearts."

And then he would say, "Hannah's a piggyback heart transplant.

"She's got two hearts."

And they would be shocked at it

and couldn't believe how somebody could have two hearts.

CHILDREN LAUGHING

As the weeks turned to months and the months turned to years,

Hannah was recovering well.

The good times had returned to the Clark household.

After Hannah had her transplant, it was a sense of relief.

She was walking like normal, talking normal.

She was just a lovely little girl.

Ah!

As a transplant child,

she would live the rest of her life on immunosuppression drugs

intended to stop her body from rejecting the donor organ.

She started going to school and was even well enough to take

part in the British transplant games.

She was making the most of life

and her family didn't give her medial issues a second thought.

As far as I knew, when she had a transplant

and everything is OK and you don't have rejection,

I thought she'd be right. She'd be OK. She'd be fine for life.

I didn't realise it is not as easy as it sounds.

At the age of six, Hannah found herself back in hospital.

The strong drugs that were protecting her donor

heart from rejection were leaving her immune system vulnerable

and causing serious complications.

One of the illnesses they can have through the anti-rejection

drug can cause a form of cancer of the glands,

..and it's called LPD.

..lymphoproliferative disease.

So...

..this happened to Hannah.

Her glands started to pop up in her cheeks and she started to get ill.

We thought, "Here we go again."

She started to have complications of immunosuppression, the drugs,

and she developed a rather aggressive cancer...

..which affected her bones, her neck...

She couldn't breathe, so that was really difficult.

We tried to use anti-cancer treatment, but it didn't work.

We collaborated with groups at Great Ormond Street and the US,

where we programmed her own cells to fight the cancer - it didn't work.

Regular cycles of chemotherapy were taking their toll on her young body.

At this time, a children's charity paid for them

to go to Florida on a holiday.

Wherever we went the video camera always came with us

because we didn't know how long we had Hannah for.

We made a film of Amy, Hannah and Daniel in the pool.

We needed to be reminded of all the good times that we had

because there was no pain with Hannah -

it was all excitement and laughter

and enjoying her brother and sister.

And I just let the film run and I thought,

"I know what I'm going to do with this film."

And although a video would never bring Hannah back...

we needed it. I was going to use it to play.

Hannah was in a no-win situation.

The immunosuppression drugs that were protecting her donor heart

were also causing tumours to ravage her body.

Between the ages of eight and 11,

her doctors struggled to strike a balance

and Hannah came close to the brink many times.

It got to the stage then that she became ill again,

and she was so ill that she was nearly lifeless again.

She was having seizures,

and they said to me that...

"We think the cancer's spread to her spinal cord...

"and she's only got 12 hours to live."

So I said to them,

"You believe what you believe.

"I believe what I believe. I'm going back to Hannah. She needs me."

I left them there and threw my chair across the room and left.

I said, "Thank you very much."

When Hannah woke the next morning,

no-one could believe she was still alive.

She suffered a lot during this period, you can imagine.

And eventually, we decided to reduce the immunosuppression,

hoping that that would improve the cancer, and it worked.

But when the cancer improved, there was a problem

because the donor heart,

that rejection got worse and worse and worse.

We couldn't stop the immunosuppression completely

because that would make the heart almost toxic, the donor heart. Er...

Her own heart, in the meantime,

was getting better and better and better.

In a cruel twist of fate,

the heart that had once saved her was now killing her.

The family were desperate and the man they trusted with her life

was now retired and out of the country.

We had a very good social worker, which is Jo, Jo Wright,

and she's from Hayfield.

She was still in touch with Professor Yacoub, so we said,

"Get back in touch with Professor Yacoub.

"Please ask him, can he do something?"

For Christmas in 2005, 12-year-old Hannah got the welcome news

that Professor Yacoub was flying into the country, and he had a plan.

She said, "We've got the best man back, Mam."

"I said, "We have. We'd only get the best man back."

And then she stopped worrying.

He proposed to remove Hannah's donor heart.

However, no-one had ever dared such a risky procedure before,

and there was no way of knowing if her natural heart

could cope on its own.

We decided to take the donor heart out completely.

People said, "Nobody has done this operation before.

"It's going to be impossible and dangerous," and so on.

I said, "We know where we put it."

The ground-breaking procedure was planned for 20th February, 2006.

With her family by her side,

Hannah prepared for her operation

at Great Ormond Street Hospital, London.

We were getting her ready for the operation and her nerves kicked in...

..and she was worried...

..that she wasn't going to make it.

We were trying to convince her to carry on down the corridor.

She wanted to walk, to go down to have this operation.

But she was hesitating.

When we took her down to the theatre,

we actually gave her a kiss.

Maybe for the last time in my life, I don't know.

It was then, I was looking at her - she was sleeping - thinking,

"Oh, my God, they're going to cut her."

And in my mind, I was thinking, I just want her back.

I don't care how you do it, what you do to her,

just make sure I get her back.

The operation was planned to take eight hours.

Whilst the surgeons worked, all the family could do was wait.

We had this teddy, so we decided to give it a name

while Hannah was having this operation.

So we thought, how can we name this teddy?

We got together the names of the doctors and people

which meant most to us, and we took letters from each of their names

and come up with...

-Bonzy.

-And every letter meant something, didn't it?

-Mmm.

After only four hours, news came from Theatre.

The donor heart that kept Hannah alive for over a decade

had been successfully removed.

She was no longer the girl with two hearts.

'A hug from her mum, as Hannah Clark is overcome by emotion

'at a press conference...'

When the news broke in the Lancet medical journal

that doctors had helped a human heart recover,

Hannah faced worldwide media attention.

'The doctor who's overseen Hannah's care since she was small

'is delighted by her heart's recovery,

'and says it's the first time

'it's happened to a child.'

The heart is not showing any signs of any deterioration.

As a matter of fact, it's getting better and better with time.

So it's really great.

'Apart from the medical lessons learned from Hannah

'about how children's hearts work,

'her doctors say one of the most important

'for those pushing the boundaries of medicine

'is to never give up.'

'After the operation, we didn't know'

how long she would survive.

It was all new... new territory for everybody.

For the doctors, and every year is a bonus.

So we have two birthdays -

one to celebrate her donor heart coming out,

and one is her own original birthday.

Today, seven years on since the removal operation,

Hannah is at the Magdi Yacoub Heart Science Centre,

as the professor wants to review her case.

-Hey!

-Hello!

-Hannah, how are you?

Lovely to see you. My God, you have grown!

-You are so tall now.

-Sort of!

-Still tiny!

-What do you mean, still tiny?

-Still short.

A very, very attractive young lady.

I think the long-term is quite good.

Her heart has been monitored regularly

since the removal operation.

Now, Hannah and her family want to know,

has their ordeal finally come to an end?

All the indications point in the direction that Hannah is cured.

What's going to happen in 100 years, I don't know.

-I probably won't be here in 100 years.

-You probably will!

It was amazing. It's really good.

Things like that will help other people in the future.

This is how they cure these illnesses and solve these problems.

And hopefully, the future will be brighter

and she'll keep heading the way that she's heading.

-The main thing is, are you enjoying life?

-Yes.

-In what way?

-Just going out, doing normal things.

So you finished school?

Yeah, I finished school. I finished college...

'Hannah has taught us many things,

'er, what the human body can endure,

'in terms of many problems she has been through.'

This is heart muscle...

'And, er, more than that is

'all the findings about the immune system,

'fighting cancer,

'and how it can actually win against very aggressive...'

I mean, very aggressive cancer.

Now you have a beautiful heart, that's the thing to remember.

And you'll look after it.

'So, with Hannah, and other people in the recovery,

'we want to solve the mystery'

of heart failure,

and the mystery of biology, if you like.

Such, er, an intricate story.

At London's Royal Brompton Hospital,

doctors are already putting into practice

what was learned from Professor Yacoub and this breakthrough case.

Hannah's surgery really was a step of

advancing our understanding

of how the diseased,

failing human heart can recover,

that it is a potentially rescuable situation.

The evolution in cardiac medicine

over the past 50 years has been dramatic.

First came better drug treatments, transplantation followed.

Today, doctors are looking to lay down their scalpels

and are turning to cutting-edge genetics to repair,

rather than replace, broken hearts.

The era of biological repair solutions

to a variety of different diseases doesn't mean that

we'll be in a new era for modern medicine.

Only time will tell whether the step-wise impact

is the same as the discovery of antibiotics.

But it's conceivable that

it could have a major impact on our healthcare.

Whilst the story of Hannah's heartbeat

resonates around the world,

in Mountain Ash, she has her own future to consider,

a future she could never have dreamt of

if it wasn't for those who gave her the gift of life.

Without people so dedicated in their job, Hannah wouldn't be here.

And also, with people making the right decision

by allowing their child to be a donor.

If it wasn't for donors, Hannah wouldn't be here. Simple.

It's very hard to use the word 'miracle'.

What does 'miracle' mean?

Very unusual, er...

unexpected, er...

miraculous? I don't know, what is a miracle?

Yeah, it's veering on that.

Professor Yacoub is like a second father to me,

cos he's known me inside-out

and he is the bestest man I have ever met, apart from my dad.

He is incredible and means so much to me

and my family, cos he's brought me back to life.

Not once, but twice.

And I wouldn't be here without him.

I actually feel that it's a privilege for somebody like me

to be involved with such a speciality, which I love,

enjoy, particularly seeing people getting better.

There is, er,

nothing better than that.