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Great Ormond Street Children's Hospital - for over 30 years,

their heart transplant team have made dramatic advances.

Life expectancy of the new organ

has doubled over the years.

But they face a huge problem.

Every year, the number of donor hearts decreases.

Safer roads, better intensive care

and a society reluctant to donate,

means fewer hearts and longer waits.

Keeping somebody in hospital

for three to six months while you're waiting for

a heart transplant is a very expensive thing to do.

More and more people will not make it to their transplantation

and they will die while waiting.

The medical team face a dilemma -

while every parent believes their child should be the lucky one,

doctors must weigh up the risk

against their limited resources.

He will ultimately get out of here

in a good, healthy condition.

We've got so much trust in the doctors here.

They will get him through this.

MONITOR BLEEPS

VENTILATOR RASPS

Two-year-old Holly Keogh

has lived with a heart condition since birth.

Last week she went into sudden heart failure

and was flown from Ireland to Great Ormond Street's

cardiac intensive care unit.

She's been stable, she's been very calm,

completely asleep,

resting, almost like hibernation.

I think she knows her family are there,

because when they touch her hand,

there's a minor change in her observations,

but other than that, the machines are doing everything for her.

With her heart failing, she needs a transplant,

but she could die waiting.

They've always said she's a little girl running round

on a heart that doesn't work.

Obviously, on a hell of a lot of medication,

so that was helping too, but still, she was managing.

She, basically, collapsed in my arms

and a week later then we ended up over here.

For her safety, the doctors have put her into an induced coma.

When a doctor's telling you your daughter's at risk of sudden death,

and you're in a hospital in intensive care,

it's very scary, you get scared, because you're feeling

this is the place where it shouldn't happen.

While they wait for a donor heart to become available,

their only option is to put Holly onto a machine

called the Berlin Heart.

This operation is as risky as a transplant itself.

At its very basic level, it is just a pump

and it works by taking blood away from the heart,

and pumping it back into the body,

in such a way that the heart goes, "Ahhh!

"I don't have to do it!" and has a bit of a rest.

In most situations here we're putting them in to support our patients

until such time as they can get a heart transplant.

We can't predict when that's going to happen.

We wish we could, but we can't. We have to wait.

LIFT BELL PINGS

THEY CHATTER

THEATRE NURSE: OK, so this is Holly Keogh.

This girl's been listed for a while and been transferred

urgently from Dublin with a deterioration. Ionotrope dependant.

She's on a lot of antibiotics. She's had some teicoplanin from us.

There's blood available. No allergies.

CLOCK TICKS

Despite the risks, the Berlin Heart

has saved the lives of 46 children at Great Ormond Street,

keeping them alive until a heart became available.

These are handmade in Germany.

Rather beautiful, isn't it?

And 18,500 euros each.

Cheap at half the price.

When we started using these,

we really wondered how children

and families would just cope with what looks like a monstrosity

sitting outside their children's tummy

and it's full of blood.

This part of the chamber is red because blood's coming in this way

and going out that way.

I'm always amazed, whatever disease process you have, how well

children cope with it and how well their parents cope with it as well.

I think it just reflects human nature

and how well you can cope with almost anything life throws at you.

At anything up to seven hours long,

this procedure requires the surgical team to install and secure

tubes into Holly's existing heart chambers, then subtly

rebalance the pressures of her circulation.

Think we'll go size nine, yes?

WATER GURGLES SOFTLY

SURGEON GIVES INSTRUCTIONS

For this procedure, Holly was put on a heart bypass machine.

It's running.

Two hours into the operation,

Holly is coming off bypass.

Only now will the surgical team know if the Berlin Heart

can keep her alive.

When we first came off, the right ventricle was very dilated

and the pressures were very low.

She was really struggling.

We've tried various manoeuvres, we've increased adrenaline,

paced and back on bypass to give her heart a bit of a rest,

come off again and actually everything's much, much better now.

So, actually it's looking good at the moment, much better.

The Berlin Heart has saved her life,

but around 20% of the children on the device do not survive

to transplant.

From being listed for transplant,

you could have a transplant within hours, which has happened to

some of our patients, or you could wait up to a year or more.

Unfortunately, there is a huge shortage of small organs

in the country.

She could potentially have to wait a good while for her new heart.

11-year-old Sol Giorgio was diagnosed

with a severely defective heart before he was even born.

I've known him since prenatal life,

from about 20 weeks of gestation, when he was found to have

a big hole in between the two pumping chambers of the heart.

The right and left pumping chambers were inverted.

He's lived with a pacemaker and has been a regular visitor to

the hospital where he's undergone numerous procedures.

You never know when a boy chops his finger off

whilst making a hamburger and needs a finger.

He knows that he's here to be made better.

He wants to go home because he misses his friends,

he misses his room, he misses his house,

but he knows that he's going to have some sort of operation.

He doesn't need to know too much now,

because he's 11 years old

and some things, obviously you

can tell him, and some things you may want to be a bit more careful.

He's able to hold a normal conversation

and is able to do things at rest.

He's not really able to walk far, becomes breathless.

He wouldn't manage a day at school.

Two weeks ago,

he came back to hospital as one of the valves in his heart was failing.

The heart is not well enough

for us to safely repair this valve at the moment.

Therefore, we have to think of other forms of treatment for him

and the other form of treatment that we have discussed

and thought about was possibly transplantation.

But because the left-hand side of the heart isn't working very well,

the pressure in the right-hand side of the heart has increased,

which makes him at high risk for transplantation.

But the team face a dilemma.

Recent tests showed that his irregular circulation

could cause a transplant to fail,

but if they do nothing, he will die.

Doctors have changed his medication

and are going to repeat the tests, hoping he'll have improved enough

to be eligible for transplant.

I feel really tired.

NURSES CONFER

Is it because of the medicine that you gave me?

Yeah, makes you feel sleepy, doesn't it?

It makes you feel relaxed.

What I did need everybody to be aware of

was just how high risk the anaesthetic had been,

last time, or how stormy the anaesthetic had been last time

and that this time it will be equally high risk.

And so therefore, I wanted everybody to be aware

that something bad could happen this afternoon

and therefore we could stop the quality of life Sol had left to him

and I just wanted to make sure that

it was a genuine idea we really were going to find something different

this time to make this worthwhile.

'We've had a long discussion this morning

'about how justifiable it was to do this investigation.

'Reluctantly, I think, the anaesthetist has been persuaded'

that the information would be important

and does make a huge difference in how we might treat him.

His parents have been very committed to this child,

really, from early on in gestation.

They knew there was a worrying outlook and therefore at this stage,

they're not happy to give up and think Sol doesn't have a future.

They still think that Sol has a future,

even if it means doing quite invasive things to achieve that future.

The data they collect will decide whether he's suitable for transplant.

This is very hard to interpret. Breathe away again, please.

The EDP's up at 29 and 30.

-It's not good, I'm afraid.

-OK.

A bit disappointing.

Well, it's very, because he looked better, didn't he?

He's actually been behaving better and looking better.

OK, so it's average between the 2.3...

Dr Graham Derek will give Sol the gas nitric oxide,

hoping it will open up the blood vessels and normalise his pressures.

OK, injecting.

-See you later.

-Thanks.

OK, go. We're ready.

Now we just wait, just wait to see whether the medicine he inhaled,

nitric oxide and the increased oxygen, makes a difference to the pressures.

Can we just checked the zeroes again, please?

It's down from 28 to 25.

VOICE FADES OUT

Half an hour later, the nitric oxide has worked and they have their data.

The second set of figures are more promising.

He isn't protecting himself, is he, from pulmonary oedema, by...

Clamping down.

Clamping down. Is he, is...

Do the pulmonary veins respond to nitric oxygen?

Gosh, I should know.

He will ultimately get out of here in a good, healthy condition.

And we know that. Some friends of mine have been asking,

was there a chance he might lose, he might win?

That never, honestly, has ever crossed my mind.

We've got so much trust in the doctors here.

They will get him through this.

If it means getting him a new heart, then great.

Would you not expect his cardiogram to go up?

Yes, I would've thought it would go up, you see.... But it hasn't.

Well, it's very difficult.

I think this is do-able.

It's a reasonable risk, I think, isn't it? On these numbers?

Over the next few days, doctors will need to make a decision

whether to list him for transplant or not.

Within days on the Berlin Heart,

there's been a dramatic change in Holly's condition.

She's alert, she's active,

she's almost, has also begun to mobilise,

she stood up for the first time, I think, after coming to the ICU,

has been asking for food and having some breakfast,

so that's really good.

Holly's now well enough to join a queue of children

waiting for hearts on Ladybird Ward.

-Mummy.

-What's that?

Mummy!

What is it?

Mummy!

When the programme first began at Great Ormond Street in the 1980s,

we didn't have anyway of looking after children

who had end stage heart failure,

other than drugs and using a ventilator to help their breathing.

I can remember as a junior doctor

seeing patients slowly fade away on the ward here.

So all these children on the Berlin Heart,

ten years ago, would be dead, if they were on the ward at that time.

Bend it all the way, and kick.

And bend it, and kick. And bend it, and kick.

The Berlin Heart is keeping these children alive,

but it's a strain on the hospital's resources.

The children are confined to the hospital

and there are serious dangers having a life supported mechanically.

There's three big issues with this - bleeding, clotting and infection.

Clots develop in the circuit

and we have to change these chambers sometimes,

but sometimes a big clot may occur very quickly

and flick off into the circulation

and strokes is one of the common issues

with artificial pumps and artificial hearts.

There are some children who sadly become very sick while on the Berlin Heart,

have a major complication and do not survive.

And in general, the longer you're on Berlin Heart,

the more likely you are to have some sort of complication.

Ellie arrived at Great Ormond Street after a virus irreversibly damaged her heart.

She and her family have been confined to the hospital for over three months.

104 days.

Which is not as long

as the longest person at Great Ormond Street Hospital.

The longest a child's been on Berlin Heart is 228 days,

so we've got a way to go, but we're not going for the record.

We're well dug in now, I think is the way to look at it.

We've got our routine sorted out.

A lot of it is really just Ellie being two

and us being parents and making sure we're good parents towards her.

-Are you going to jump in the muddy puddles?

-Yes!

LAUGHTER AND APPLAUSE

During her time on the ward, Ellie has had multiple infections

and had four Berlin Heart chamber changes due to clotting.

Clever girl.

One undetected clot resulted in a stroke.

Do your shoes light up?

These devices really weren't, originally considered to be suitable

for such long-term waits for transplant.

We're lucky we haven't seen more complications with it.

These poor children and their families

are just having very long waits for transplant.

Internationally, the figures are about one in four

will never make it to transplant

because of the complications, but you think everyone's doing,

doing their best, but it's a really difficult situation.

Without transplant, there isn't an exit strategy for these children

and they will get to a stage, I'm sure

and I think we're feeling very close to it,

where we are unable to offer more support to the next child,

because we haven't been able to move any of these other children along.

Older children have shorter waits,

as they can receive hearts from adult donors.

The hearts of a size suitable for these children on Ladybird

are the rarest of all.

-What flavour ice pops would you like?

-Orange.

-Orange?

-Would you like strawberry ones?

-Yes.

-Mmm...

Holly, having just arrived, is at the back of the queue.

-Do you want to sit up a little bit?

-No.

Today was a big day, because we only got told this morning

that we were coming to the Ladybird Ward, so that was great.

She's going to make new friends

and hopefully enjoy herself as best we can.

As best we can, isn't that right, baby? What, sweetheart.

-I want to go home.

-We will be going home, very soon, OK?

OK?

-You're the best girl, aren't you?

-I don't want to stay here.

-I know.

Whoa!

Sol has recovered from his investigation.

And his parents are waiting to hear the decision from the team.

Yes! I can turn back into a car again.

We discussed Sol in whether we would accept him for a,

will be a high risk heart transplant,

or whether we would still consider whether he should be assisted

while we're waiting for a graft to become available to him.

That's what we need to discuss today.

In an ideal world, if there were no complications to assist,

that would be the safest thing. He would assisted and listed,

but the complications of assist, we need to balance against that.

Also, how he is now, really, he's reasonably stable and prepared.

But I think the risk, I mean,

it's still not without significant risk,

bringing on a broken heart, is it?

The chances are, we would accept him at a higher risk for transplant now.

So, I wouldn't do it a Berlin Heart, personally. What do you feel?

Yes. I think this data's been very helpful. He has improved on the ward.

But he's a much better patient now and is lower risk, I think,

as a result of what's happened with the bed rest and the moving on in time.

-I'm very encouraged by this, I must say.

-Mmm.

-Very pleased.

VOICES FADE OUT

Doctors decide to list Sol for transplant.

They must discuss this with the family

and convince them this is the right thing to do.

-I'm Matthew.

-Nice to meet you.

-Hi, you all right?

Transplant isn't something that you want to do for any family,

but if a child is sick enough

and there isn't any other treatment option available,

then ultimately, transplant is the only thing left to some families.

They just need to take away the basics, that this isn't a cure.

This is a treatment option that's going to give, hopefully,

a really good quality of life for a longer amount of time

than they would have without a transplant.

It's a teamwork thing, so we need to have a conversation about

what it means to have a transplant,

what the quality-of-life is. I don't know whether Dr Birch covered all that,

things that can go wrong and all those sorts of things,

-so you can make a decision...

-Not in too much detail.

He gave us the, you know, what certain risks there could be,

-things like kidney failure.

-Yes.

-Or some kind of cancer.

So we've mentioned some of the major things

which can go wrong after transplant,

and did Dr Birch tell you about life expectancy after transplant?

-No, he didn't.

-So, if you take ten people now,

you gave them a transplant,

in 15 to 20 years' time, only half of those,

seven, five to five seven of those would be alive at that point.

So, survival is, for that particular graft, is 15, 20 years.

When you talk about life expectancy, it's such a big thing to face...

It's quite a long way away.

As far as medical research is concerned and medical change,

there's still, there's still potential for change.

We want him to feel as normal as possible growing up,

cos he's still only 11 and he hasn't, he's...

Physically, he's had a limited childhood.

Intellectually, he's been up there,

he's done very well, we're so proud of him,

but he's never been able to run and really commit himself physically.

We just want him to have a normal, normal teenage years. Really...

-Well, a normal life.

-Normal, healthy life. Yes, of course.

And then we come down to how we talk to him about it

and how we do that, and that's for you to kind of think about.

Sometimes it's a bit like saying you have a car that's not working

and you need to change the engine, it just needs a new engine

and we expect he'll have a really good quality of life afterwards

and he'll go to school and he'll be able to play football,

all those things and we look at the positive side and try not to frighten him.

If you feel comfortable, I would like to talk to him today,

because the longer you, this as a conversation rather than me saying,

I would like to get him on the list as soon as possible

and we're in a position to be able to list him today.

We have the antibodies back and there were very few, but I don't want to push you too hard.

-Can we take our time?

-Yes, you've got to feel comfortable.

-Don't want to give a decision now.

No, fine. You've got to feel comfortable with it. Absolutely. Absolutely.

He's just gone through a lot in the last 24 hours.

To throw this at him now

is going to be too much for an 11-year-old to take on.

-Yes?

-Good.

-Thank you.

'Really, their minds are working overtime, thinking,'

"how have I ended up in this situation?

"I can't believe we're here."

Very often you have to repeat things quite a few times just so you're sure

that they know exactly what they're getting themselves into.

It's not because they're not listening.

It's purely because their minds are working overtime,

thinking of all the other things in their lives

that are going to be affected by this one decision.

So, it's pretty tough for them.

You don't have to tell him today. I'll be very, very clear about that.

The issue is, if you don't tell him today, he can't be listed today.

If we talk to him on Monday then we can list him first thing Monday,

but that's the only thing that... If you're happy for him not to,

then that's fine. We're happy for him not to be told today,

it just means that he won't be able... If a heart came along,

he wouldn't be able to have it.

So...

OK. Got it.

The parents have asked Dr Rob Yates to explain to Sol

why he needs a transplant.

When I first saw the information from the test

I was a bit worried,

but after we'd done some further tests and that kind Dr Derek

had done some further tests,

it actually looked a whole heap better

so that's really good news.

But even with that getting better,

we still think that the problems in your heart are such

that it's not going to be possible to fix it

with a straightforward operation. Yeah?

But we do think that it would be possible to think about doing a transplant operation instead, OK?

Now, that's a big step. I know that that's been said to you already...

It's all right, it's fine.

-He's doing OK. You're doing really, really well.

-Good boy.

You're fine.

We're proud of you for what you've gone through

and for being so brave about it, all right?

It's OK. There's some really good things about that, too,

because it would mean that you wouldn't need a new pacemaker box.

If everything went fine, I would never need another operation.

Erm, I would hope that you wouldn't need another operation,

I can't promise. The likelihood would be small.

OK?

When my old one's out, how long will it be out for?

Sometimes it's difficult for us to put hearts in children who've had lots of operations before

and the old heart has to be out for several hours

before we can put the new one in.

-You know when I wake up?

-Yep.

-When I wake up...

will I feel that I have a new heart

-or will I feel as I did when I went to sleep?

-You will feel just as you did

when you went to sleep,

but I hope that you'll feel healthier and better.

OK?

-OK.

-All right?

-It's just like a normal operation,

-except it'll last a bit longer.

-A bit longer, a bit bigger,

but we think that this is the best way forward for you.

OK?

We have a plan now.

We know where we're going.

I think it's been jolly difficult for Mum and Dad

because they haven't known what we're going to do

and when we're going to do it.

-My friend had cancer...

-Mm.

..and what's more important, this or cancer?

They're just as important. There isn't a more important bit.

Didn't he come to see you this morning?

-Look how fit and well he looked.

-Yeah, exactly.

And he played with you.

So... All right, OK, OK.

-It's going to be fine.

-Hey, hey, hey. It's all right. It's fine.

You've been brave up to this point and you can be brave from here on.

-SOL WAILS OK, all right.

-It's all right, nobody's going away.

I'm not going anywhere, OK?

It's all good. It's all good. You're just going to get better and better and better and better and better, OK?

Shall we stop... Do you have any other questions?

At the moment?

-I have one more question.

-Yeah.

-Do you like my Ferrari F50?

-I do. Yeah, I like your Ferrari F50.

Very smart. You've been very brave.

-He's been very good.

-Yeah, he's been really good.

-He'd done really well.

'It's been hard work. It's been a real team effort.'

When we try and do transplants in children with difficult heart problems

in whom the transplant is high-risk,

then making a decision to do a transplant

when not very many transplants happen

and high-risk transplants mean that the recipient may not get such benefit

from the transplanted organ as someone who's not high-risk,

is a very difficult decision to make.

It's a scarce resource and it's one of the resources

which is not financially, but is by necessity, rationed within the NHS

and there is no way round that. So it is a very difficult decision.

JJ? JJ, what special day is it?

D'you know what special day it is?

Can you remember? Shall I tell you, J? It's my birthday!

Yay!

Ooh.

There's a birthday on Ladybird Ward

and they're taking the unusual step

of going out of the hospital for pizza.

Unfortunately, Holly's too unwell to join them.

We're just checking that we've got everything -

the emergency pack for the bag,

erm, it's been so long since we've been outside the hospital

that we don't even have a nappy bag or proper nappy wipes or anything.

We've forgotten the type of things we used to take out with us.

Yeah, we've forgotten the routine of life, so we're just improvising.

Emergency equipment check.

-Four clamps.

-Yep.

-Orange power cable.

-Erm, attached to the mains.

Re-breathe bag. Oxygen tubing.

-Attached.

-Appropriate-sized mask?

-Yep.

When that's switched on, you'll get a little green light.

-You're drawing on the battery, it's not a "charged" light.

-Ah, right.

Ignore that completely, there is no charge indicator on the battery.

The first time he's been out since January.

Now, what do you think?

You want food?

As a group, the Berlin Heart children are the most expensive

in the department.

If you have a very small number of children

who have very expensive treatment,

then it has a negative effect

on a hospital's budget,

and keeping somebody in hospital for three-to-six months

while you're waiting for a heart transplant

is a very expensive thing to do.

There we go, some pizza and a little bit of chicken.

'Some people might think we're crazy to be doing this,'

you know, that this is a complete waste of money,

but that isn't how we see it,

because we see truly positive results from children

who are extremely ill having successful cardiac transplants

and having extremely good quality of life.

MACHINE BEEPS ONCE

Over the last few days, Sol's taken a turn for the worse.

His heart reserve had fallen,

'he was much more breathless, exhausted and tired

'and had lost his appetite'

and that's a really bad sign.

When you stop eating when you've got heart failure, that's a bad sign.

'His liver was much bigger.

'He was not going to wait much longer for a transplant.'

So he doesn't... He gets one beat,

but he can't produce an output on the second beat, which...

He's not filling enough to, maybe... I don't know. On that second beat...

THEY MURMUR

There's no time to wait for a transplant.

The doctors decide to put Sol on a Berlin Heart.

They've never used it to support someone with such a complex condition before.

But he's dying, so there's no other option.

After four hours,

surgeons have successfully installed the Berlin Heart.

We haven't done this before.

We don't really know how it's going to work out

but we know the alternative is patient demise.

Faced with that reality,

it was a step that we were all willing to take,

erm, into the unknown, together with the parents

and the whole unit.

After the huge investment and effort,

doctors hope that it will not simply defer the inevitable.

'The more children that we support with the Berlin Heart

'and other mechanical devices,'

their only exit route from that whole process

is to have a heart transplant.

'So there's going to be a point where we're going to see

'that people coming into the unit to be provided with that support'

are going to be stuck because there's not enough donors, and what we really need

is to be able to increase donor numbers somehow.

What are you doing?

-I'm looking at the goldfish.

-There you go.

-Are you seeing them?

-Why can't we take that off?

-So we can see a fish.

-Have you seen the goldfish today?

Overnight, the team have finally had an offer of a heart

from over 1,000 miles away in Europe.

It's a match for Ellie.

OK. Had the call, it's good to go.

-Good to go.

-OK?

They're still in theatre, they've viewed the heart,

the heart looks good. They're not leaving just yet,

I need to let theatres know that they're all good to go and get up and running,

but we'll probably be going to theatre in the next 10, 15 minutes, I would have thought.

-OK. Yes.

-Fantastic. That's fantastic news, that really is.

OK?

'So happy for them.'

Pure relief, because they've had five months of, they were like,

"That's never going to happen."

'As well as that, it was relief as well on my behalf,

'because I was looking at them, going,

' "God, it can happen," because I was beginning to believe'

it wasn't going to happen

because we had three children all at a very close, similar age.

I was beginning to think

'that this age group was just going to build up and build up.

'Now at least there's a chance, maybe, Holly might get one.'

Having spent over five months on the Berlin Heart,

Ellie finally gets her chance.

OK, let's do it. Do it to it.

So, heart's there.

And then paperwork's here.

Right, time to take out the old.

Take a look.

Still beating.

It's kind of sad. For every heart you get,

-there's a sad story behind it.

-Oh, yeah, absolutely.

Because the heart's been ischaemic

for a period of time and has lost its own innovation,

we've had to put some external pacing wires on

to try and get it to contract,

so we're pacing it at the moment to stimulate it to beat

and hopefully, once it's sorted itself out, we turn off the pacing

and it should take over its own contraction.

It may take 24 hours, it may take a few hours,

it may take a few minutes, it just needs time to recover.

BEEPING

HE MUMBLES

I've no action,

no cardiac action for about a good 30 minutes.

I've never had that before.

It just said, "Still."

And you can see.

Don't fill any more?

Yeah, don't fill any more. Oh, jeez.

BEEPING CONTINUES

'It wasn't beating. It was just still.'

That's bad...right?

You're putting in a new heart.

This heart is supposed to be healthy, vigorous, powerful

and after you establish blood flow,

when this new heart gets blood flow, it is still...

then that's bad.

He was very concerned that the heart took some time to get going

and initially, really, there wasn't very much cardiac activity.

Fortunately it's been a young donor heart

and young hearts will improve even though they've been under

quite a lot of stress, there's been travel time,

I think there's still a good chance things are going to work out here.

So we'll be optimistic,

but still, I think we have to be a little bit cautious.

It's going to be a difficult night.

They're about to take Ellie up to intensive care for recovery

when there's a problem.

The surgeon is called back into theatre.

It's a combination of high CV and low blood pressure

that suggests there's an RV failure here.

Yeah... It was just so sudden, it was like mechanical.

Oop, CV just dropped.

What's going on?

Suddenly, just bang.

Yeah.

That is just the strangest thing I have ever seen.

Weird.

The pressure started to drop and then we were opening the chest,

there's not that much bleeding, and all of a sudden it got better.

So...touchy.

Oh, well. I wish I'd known.

After eight hours in surgery,

TY, the surgeon, wants to speak to the parents.

Now the truth.

The surgery itself went fine. The thing is, though,

typically when you release the clamp to allow blood to fill the new heart,

the new heart typically starts to beat pretty quickly.

For some reason this heart was very sluggish.

In fact, it was inactive for about 30 minutes,

and that's a little unusual, so that raised a little bit the alarm bell.

All of a sudden it got better.

Again, for no good reason.

I couldn't tell you why, so what you need to know,

the bottom line is that she's stable.

The numbers are good right now

and she's on a moderate amount of support with drugs.

She's off the Berlin Heart. She doesn't probably need ECMO right now.

The bleeding is under control.

Is that OK?

So it's another waiting game?

-Yes.

-OK.

Well, thank you for doing what you've done, you must be tired.

This is a healthy heart. It SHOULD recover just with some TLC, I guess.

After three days on cardiac intensive care,

Ellie's new heart is beating well

and the team are pleased with her progress.

Sol, now on the Berlin Heart, is weak but stable.

That day was really difficult,

but once we overcame that and we see how well he's doing,

then I think to myself, now I know that he's looking after us upstairs,

and you know, at the same time I know it's going to be fine

when it comes to the heart operation,

cos this was a lot more difficult than the transplant.

Definitely.

It's 1am and after a three-week wait for Sol,

his parents have been told a donor organ might be available.

A team has been sent out to check the donor heart is suitable.

It's very good news... the heart's fine.

Brilliant, brilliant, thank you so much.

Thank you, I want to kiss you now!

LAUGHING: Don't kiss me, I've done nothing!

Thank you so much.

All the donor team, or the donor.

-Without the donor we wouldn't be in this position.

-Oh, God, yeah.

OK? So everything looks good at the moment.

The surgical team up there are more than happy with the heart function.

It will be a while before we go to theatre, probably about an hour.

That's fine. That's fine...

Going to theatre. So we need to tell him.

I feel, personally, excited, but worried, obviously.

And...

It's very mixed emotions.

It's so mixed emotions.

-And it's normal.

-Yeah.

It is really normal to go through this.

And the medical team that are doing it are...

They're all here waiting.

It's going to be fine.

He's going to be playing football sooner than we know.

I'll just pop my head in and make sure he's decent.

I need to get you into one of these sexy gowns in a minute, OK?

'It's been really difficult for him waiting.

'Especially since he's been on intensive care for a while now

'and he is awake and up and about so he is absorbing everything

'that's going on around him,'

and it's not always pleasant.

So I think he'll be happy that he can have a heart

and potentially get out of intensive care and get home, but I think

he's also going to be very worried and very scared,

like he has normally going into his anaesthetics that he's previously had,

and I think you know, he's got reason to be worried.

Do you guys want to go up to the family room or do you want to

go to the flat and, I know it sounds funny,

but try and lay down for a little while?

It's probably going to be at least 4-5 hours before we see anything, OK?

SUCTION

The bleeding is now becoming horrendous. It's a nightmare here.

After ten hours of surgery, there's been a change of theatre team

and the parents are being told that the transplant is not going to plan.

The heart is a bit disappointing.

-We've got an ECMO.

-Yep, no worries.

The new heart, for reasons I don't understand, it's often a risk

that the heart does struggle to cope post-transplant

as it is here.

I'm not entirely sure why,

but clearly this new heart isn't doing well enough at the moment...

..to allow us to let it take over completely.

So we're going to convert the bypass circuit to ECMO.

It'll take us the best part of an hour to get all that sorted out,

and then go up into ITU on ECMO.

The ECMO machine will breathe for Sol and pump blood around his body.

Given time, it's hoped Sol's new heart will strengthen,

gradually taking over from the ECMO machine.

My fears are that it's not going to work or he's not going to wake up, I guess.

Or he has another complication from the procedures we're doing

with respect to the bypass circuit

and the ECMO circuit which means that he's severely affected.

And that's very frustrating.

Just remember when you see him today, he's not been well,

he's had a long day, and he's not going to look well.

-I know.

-All right?

-We know, we know.

-OK.

INDISTINCT CHATTER

Hey, Solly. Hey, soldier.

Hey, baby, you made it.

You made it, sweetheart, you made it.

You're going to be fine.

After three days,

attempts to take Sol off the ECMO machine have failed.

So, since we last spoke yesterday we had a look at Sol's heart in detail again,

and what we need to try and do is seize a window where the heart

appears to be working well, where he's free of infection,

where the lungs are as good as possible, and go from there.

Now, having tried today and not been able to get him

off the ECMO machine, I think we're going to wait

for a minimum of 48 hours before we would try again.

The average time that children would spend on

an ECMO machine is somewhere between seven and ten days.

When we're getting beyond 10-14 days,

I think that we're less likely to see recovery of heart function.

Up to that point we would anticipate that the heart will take that

sort of time to recover from a big insult and to recover

and to be strong enough to work on it's own.

We've been here before.

We know that children with this scenario CAN come off the ECMO machine.

And that their hearts will work,

so we just need to hang in there

for a little bit longer for the time being.

We are right up against what's possible.

We've pushed the boundaries to try

and do the heart transplant in the first place. We know that.

And there's no question that Sol has lurched

from crisis to crisis and it has been a question of crisis management.

That's why we're here.

We hope that we're going to win in the end

and we still have confidence that we will do, but it's difficult

and it's going to be even more difficult for the parents.

It's very difficult to know, even with the benefit of hindsight,

if we've made the right decisions for Sol.

And clearly if he's out of hospital in three or four month's time

then it 's been worthwhile.

If sadly, despite all the efforts that have been done,

he...doesn't get through this,

or his quality of life is really very poor afterwards,

then our decisions for him and his family weren't correct.

They were done in good faith.

Sol's case represents pushing the boundaries of cardiac transplantation

and Great Ormond Street Hospital and the cardiac unit

have always pushed the boundaries as far as is possible

and we should be proud of being able to do that.

As a consequence, we learn what is possible and what's not possible.

Three weeks after his transplant, Sol is still on intensive care.

He came off ECMO, but has not been problem-free since then.

His heart has worked reasonable well, but his lungs have struggled.

He's still ventilated.

His kidneys took a severe hit, or suffered a severe insult,

and it may be that there will be some long-standing kidney damage

as a result of that.

It has been a massively traumatic event for his body.

Are you hot? Or are you cold?

Yet, we still feel that there is hope that he will have

enough of a quality of life to justify all of the suffering that he,

primarily, and his family have had to go through to get this far.

Ellie has left Ladybird Ward

and moved into the hospital accommodation with her parents.

14 days after the transplant, she is going home.

We're talking about 12 medicines,

some of them given three times a day,

so there are three periods of drug-giving.

This is a small one, this is just three different medicines.

Part of our life, this is, syringes.

We are told that Ellie will not remember most of this.

Erm, but I guess at some stage we have to explain to her

in some detail how she got the scar

and how she is a little bit different to most other children.

Are you going?!

Ellie is going home today.

Ellie!

Those left on Ladybird, however,

will be one step closer to getting a heart of their own.

It's quite emotional, actually, to be honest.

Ellie!

Is she your friend?

Where is she going?

-Best of luck.

-And to you.

I'm absolutely delighted for you, I really am.

'Obviously there's the uncertainty of the length of her life

'and how well the transplant will take, all those sort of things.'

And it's this issue of, you know, every parent wants their child

to be perfect, and Ellie's been through an awful lot of things

that you wouldn't want to inflict on...

..well, anybody at all.

And its our daughter we've had to allow to go through

'this whole process, and I guess we're now redefining

'what we understand by perfect, cos she is still perfect,

'but that concept of perfect is just a little bit different,'

so you sort of live for the moment with an eye on the future, I guess.

That's what we have to do.

-We'll be in touch.

-Yeah. Talk to you soon.

-Thank you!

-You'll be back on Wednesday!

Yeah!

'We always have to warn families that it doesn't last forever.

'Your average life expectancy after a transplant is around 15 years.'

We have had patients whose new hearts have lasted up to 30 years,

which is excellent, but in essence, you're not offering a cure.

This isn't going to solve all of their problems,

so while it's an excellent thing to do, it also has its drawbacks.

The long-term outlook is now

so much better than it was even five or ten years ago.

Much, much better. It's not perfect. It's improving all the time.

We know that the treatment with transplant produces a good quality of life,

IF you can get the donation.

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