Buying Time Great Ormond Street


Buying Time

A look at the work of Great Ormond Street's heart transplant team and the revolutionary artificial heart that keeps the patients alive until they can have a transplant.


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Transcript


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THIS PROGRAMME CONTAINS SCENES WHICH SOME VIEWERS MAY FIND UPSETTING

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

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their heart transplant team have made dramatic advances.

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Life expectancy of the new organ

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has doubled over the years.

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But they face a huge problem.

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Every year, the number of donor hearts decreases.

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Safer roads, better intensive care

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and a society reluctant to donate,

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means fewer hearts and longer waits.

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Keeping somebody in hospital

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for three to six months while you're waiting for

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a heart transplant is a very expensive thing to do.

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More and more people will not make it to their transplantation

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and they will die while waiting.

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The medical team face a dilemma -

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

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doctors must weigh up the risk

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against their limited resources.

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He will ultimately get out of here

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in a good, healthy condition.

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

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They will get him through this.

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MONITOR BLEEPS

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VENTILATOR RASPS

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Two-year-old Holly Keogh

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has lived with a heart condition since birth.

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Last week she went into sudden heart failure

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and was flown from Ireland to Great Ormond Street's

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cardiac intensive care unit.

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

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completely asleep,

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resting, almost like hibernation.

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I think she knows her family are there,

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because when they touch her hand,

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there's a minor change in her observations,

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

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With her heart failing, she needs a transplant,

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but she could die waiting.

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

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on a heart that doesn't work.

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Obviously, on a hell of a lot of medication,

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

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She, basically, collapsed in my arms

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and a week later then we ended up over here.

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

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

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and you're in a hospital in intensive care,

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

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this is the place where it shouldn't happen.

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While they wait for a donor heart to become available,

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their only option is to put Holly onto a machine

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called the Berlin Heart.

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This operation is as risky as a transplant itself.

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At its very basic level, it is just a pump

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and it works by taking blood away from the heart,

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and pumping it back into the body,

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

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

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

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until such time as they can get a heart transplant.

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

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

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LIFT BELL PINGS

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THEY CHATTER

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THEATRE NURSE: OK, so this is Holly Keogh.

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

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urgently from Dublin with a deterioration. Ionotrope dependant.

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

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There's blood available. No allergies.

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CLOCK TICKS

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Despite the risks, the Berlin Heart

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

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keeping them alive until a heart became available.

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These are handmade in Germany.

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Rather beautiful, isn't it?

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And 18,500 euros each.

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Cheap at half the price.

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When we started using these,

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we really wondered how children

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and families would just cope with what looks like a monstrosity

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sitting outside their children's tummy

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and it's full of blood.

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

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and going out that way.

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

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

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I think it just reflects human nature

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

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At anything up to seven hours long,

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this procedure requires the surgical team to install and secure

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tubes into Holly's existing heart chambers, then subtly

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rebalance the pressures of her circulation.

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Think we'll go size nine, yes?

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WATER GURGLES SOFTLY

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SURGEON GIVES INSTRUCTIONS

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

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It's running.

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Two hours into the operation,

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Holly is coming off bypass.

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Only now will the surgical team know if the Berlin Heart

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can keep her alive.

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

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and the pressures were very low.

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She was really struggling.

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

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

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

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

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The Berlin Heart has saved her life,

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

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to transplant.

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From being listed for transplant,

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

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

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Unfortunately, there is a huge shortage of small organs

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in the country.

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

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11-year-old Sol Giorgio was diagnosed

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with a severely defective heart before he was even born.

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I've known him since prenatal life,

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

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

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The right and left pumping chambers were inverted.

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

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the hospital where he's undergone numerous procedures.

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You never know when a boy chops his finger off

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whilst making a hamburger and needs a finger.

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

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He wants to go home because he misses his friends,

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he misses his room, he misses his house,

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

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He doesn't need to know too much now,

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because he's 11 years old

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and some things, obviously you

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

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He's able to hold a normal conversation

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and is able to do things at rest.

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

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He wouldn't manage a day at school.

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Two weeks ago,

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

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The heart is not well enough

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for us to safely repair this valve at the moment.

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

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and the other form of treatment that we have discussed

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and thought about was possibly transplantation.

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

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

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which makes him at high risk for transplantation.

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But the team face a dilemma.

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Recent tests showed that his irregular circulation

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could cause a transplant to fail,

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but if they do nothing, he will die.

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Doctors have changed his medication

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

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to be eligible for transplant.

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I feel really tired.

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NURSES CONFER

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Is it because of the medicine that you gave me?

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

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It makes you feel relaxed.

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What I did need everybody to be aware of

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was just how high risk the anaesthetic had been,

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

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and that this time it will be equally high risk.

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And so therefore, I wanted everybody to be aware

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that something bad could happen this afternoon

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

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and I just wanted to make sure that

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

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this time to make this worthwhile.

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'We've had a long discussion this morning

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'about how justifiable it was to do this investigation.

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

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that the information would be important

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

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His parents have been very committed to this child,

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really, from early on in gestation.

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

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

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They still think that Sol has a future,

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

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

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

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The EDP's up at 29 and 30.

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

-OK.

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A bit disappointing.

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

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He's actually been behaving better and looking better.

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

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Dr Graham Derek will give Sol the gas nitric oxide,

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

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OK, injecting.

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-See you later.

-Thanks.

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OK, go. We're ready.

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

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

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Can we just checked the zeroes again, please?

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It's down from 28 to 25.

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VOICE FADES OUT

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

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The second set of figures are more promising.

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

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Clamping down.

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Clamping down. Is he, is...

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Do the pulmonary veins respond to nitric oxygen?

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Gosh, I should know.

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

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

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

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That never, honestly, has ever crossed my mind.

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

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They will get him through this.

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

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Would you not expect his cardiogram to go up?

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

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Well, it's very difficult.

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I think this is do-able.

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

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

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whether to list him for transplant or not.

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Within days on the Berlin Heart,

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

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She's alert, she's active,

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she's almost, has also begun to mobilise,

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

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has been asking for food and having some breakfast,

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so that's really good.

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

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waiting for hearts on Ladybird Ward.

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-Mummy.

-What's that?

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Mummy!

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What is it?

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Mummy!

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

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we didn't have anyway of looking after children

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who had end stage heart failure,

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

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I can remember as a junior doctor

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seeing patients slowly fade away on the ward here.

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So all these children on the Berlin Heart,

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

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Bend it all the way, and kick.

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

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The Berlin Heart is keeping these children alive,

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

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The children are confined to the hospital

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and there are serious dangers having a life supported mechanically.

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

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Clots develop in the circuit

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and we have to change these chambers sometimes,

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but sometimes a big clot may occur very quickly

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and flick off into the circulation

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and strokes is one of the common issues

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with artificial pumps and artificial hearts.

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

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have a major complication and do not survive.

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

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

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

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

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104 days.

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Which is not as long

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as the longest person at Great Ormond Street Hospital.

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

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

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

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We've got our routine sorted out.

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A lot of it is really just Ellie being two

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

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-Are you going to jump in the muddy puddles?

-Yes!

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LAUGHTER AND APPLAUSE

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

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and had four Berlin Heart chamber changes due to clotting.

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Clever girl.

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One undetected clot resulted in a stroke.

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Do your shoes light up?

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

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for such long-term waits for transplant.

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

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These poor children and their families

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are just having very long waits for transplant.

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Internationally, the figures are about one in four

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will never make it to transplant

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

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

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

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

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

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

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

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Older children have shorter waits,

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as they can receive hearts from adult donors.

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The hearts of a size suitable for these children on Ladybird

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are the rarest of all.

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-What flavour ice pops would you like?

-Orange.

-Orange?

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-Would you like strawberry ones?

-Yes.

-Mmm...

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

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-Do you want to sit up a little bit?

-No.

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

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

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She's going to make new friends

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and hopefully enjoy herself as best we can.

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

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-I want to go home.

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

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OK?

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

-I don't want to stay here.

-I know.

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Whoa!

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Sol has recovered from his investigation.

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

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Yes! I can turn back into a car again.

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

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will be a high risk heart transplant,

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or whether we would still consider whether he should be assisted

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

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That's what we need to discuss today.

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

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

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

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

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But I think the risk, I mean,

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it's still not without significant risk,

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bringing on a broken heart, is it?

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

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

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

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

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

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

-Mmm.

-Very pleased.

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VOICES FADE OUT

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Doctors decide to list Sol for transplant.

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They must discuss this with the family

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and convince them this is the right thing to do.

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-I'm Matthew.

-Nice to meet you.

-Hi, you all right?

0:21:460:21:50

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

0:21:500:21:54

but if a child is sick enough

0:21:540:21:55

and there isn't any other treatment option available,

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

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

0:22:020:22:06

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

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

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than they would have without a transplant.

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

0:22:140:22:17

what it means to have a transplant,

0:22:170:22:19

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

0:22:190:22:23

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

0:22:230:22:26

-so you can make a decision...

-Not in too much detail.

0:22:260:22:28

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

0:22:280:22:33

-things like kidney failure.

-Yes.

-Or some kind of cancer.

0:22:330:22:39

So we've mentioned some of the major things

0:22:390:22:41

which can go wrong after transplant,

0:22:410:22:43

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

0:22:430:22:47

-No, he didn't.

-So, if you take ten people now,

0:22:470:22:52

you gave them a transplant,

0:22:520:22:54

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

0:22:540:22:57

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

0:22:570:23:00

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

0:23:000:23:06

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

0:23:060:23:10

It's quite a long way away.

0:23:100:23:12

As far as medical research is concerned and medical change,

0:23:120:23:15

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

0:23:150:23:18

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

0:23:180:23:23

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

0:23:230:23:26

Physically, he's had a limited childhood.

0:23:260:23:29

Intellectually, he's been up there,

0:23:290:23:31

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

0:23:310:23:33

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

0:23:330:23:36

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

0:23:360:23:42

-Well, a normal life.

-Normal, healthy life. Yes, of course.

0:23:420:23:47

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

0:23:470:23:51

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

0:23:510:23:54

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

0:23:540:23:57

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

0:23:570:24:00

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

0:24:000:24:03

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

0:24:030:24:06

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

0:24:060:24:09

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

0:24:090:24:13

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

0:24:130:24:17

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

0:24:170:24:20

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

0:24:200:24:23

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

0:24:230:24:28

-Can we take our time?

-Yes, you've got to feel comfortable.

-Don't want to give a decision now.

0:24:280:24:32

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

0:24:320:24:37

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

0:24:370:24:40

To throw this at him now

0:24:400:24:42

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

0:24:420:24:46

-Yes?

-Good.

-Thank you.

0:24:460:24:49

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

0:24:490:24:52

"how have I ended up in this situation?

0:24:520:24:54

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

0:24:540:24:56

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

0:24:560:25:00

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

0:25:000:25:03

It's not because they're not listening.

0:25:030:25:05

It's purely because their minds are working overtime,

0:25:050:25:08

thinking of all the other things in their lives

0:25:080:25:11

that are going to be affected by this one decision.

0:25:110:25:13

So, it's pretty tough for them.

0:25:130:25:15

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

0:25:150:25:20

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

0:25:200:25:24

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

0:25:240:25:27

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

0:25:270:25:32

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

0:25:320:25:36

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

0:25:360:25:40

he wouldn't be able to have it.

0:25:400:25:42

So...

0:25:420:25:44

OK. Got it.

0:25:440:25:46

The parents have asked Dr Rob Yates to explain to Sol

0:25:460:25:50

why he needs a transplant.

0:25:500:25:52

When I first saw the information from the test

0:25:530:25:57

I was a bit worried,

0:25:570:25:58

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

0:25:580:26:02

had done some further tests,

0:26:020:26:05

it actually looked a whole heap better

0:26:050:26:07

so that's really good news.

0:26:070:26:09

But even with that getting better,

0:26:090:26:12

we still think that the problems in your heart are such

0:26:120:26:17

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

0:26:170:26:20

with a straightforward operation. Yeah?

0:26:200:26:23

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

0:26:230:26:31

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

0:26:310:26:37

It's all right, it's fine.

0:26:370:26:39

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

-Good boy.

0:26:390:26:42

You're fine.

0:26:420:26:44

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

0:26:440:26:49

and for being so brave about it, all right?

0:26:490:26:53

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

0:26:530:26:56

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

0:26:560:27:00

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

0:27:000:27:05

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

0:27:050:27:08

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

0:27:080:27:12

OK?

0:27:120:27:15

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

0:27:150:27:20

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

0:27:210:27:26

and the old heart has to be out for several hours

0:27:260:27:30

before we can put the new one in.

0:27:300:27:33

-You know when I wake up?

-Yep.

-When I wake up...

0:27:330:27:36

will I feel that I have a new heart

0:27:360:27:40

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

-You will feel just as you did

0:27:400:27:44

when you went to sleep,

0:27:440:27:46

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

0:27:460:27:49

OK?

0:27:490:27:51

-OK.

-All right?

-It's just like a normal operation,

0:27:510:27:56

-except it'll last a bit longer.

-A bit longer, a bit bigger,

0:27:560:28:00

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

0:28:000:28:03

OK?

0:28:050:28:06

We have a plan now.

0:28:060:28:08

We know where we're going.

0:28:080:28:10

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

0:28:100:28:13

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

0:28:130:28:15

and when we're going to do it.

0:28:150:28:17

-My friend had cancer...

-Mm.

0:28:170:28:19

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

0:28:190:28:23

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

0:28:230:28:27

Didn't he come to see you this morning?

0:28:270:28:29

-Look how fit and well he looked.

-Yeah, exactly.

0:28:290:28:32

And he played with you.

0:28:320:28:34

So... All right, OK, OK.

0:28:340:28:38

-It's going to be fine.

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

0:28:380:28:41

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

0:28:410:28:46

-SOL WAILS OK, all right.

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

0:28:460:28:50

I'm not going anywhere, OK?

0:28:500:28:53

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

0:28:530:28:59

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

0:28:590:29:02

At the moment?

0:29:020:29:04

-I have one more question.

-Yeah.

0:29:050:29:08

-Do you like my Ferrari F50?

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

0:29:080:29:14

Very smart. You've been very brave.

0:29:150:29:17

-He's been very good.

-Yeah, he's been really good.

-He'd done really well.

0:29:170:29:22

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

0:29:220:29:26

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

0:29:260:29:32

in whom the transplant is high-risk,

0:29:320:29:35

then making a decision to do a transplant

0:29:350:29:38

when not very many transplants happen

0:29:380:29:41

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

0:29:410:29:46

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

0:29:460:29:49

is a very difficult decision to make.

0:29:490:29:52

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

0:29:520:29:58

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

0:29:580:30:03

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

0:30:030:30:08

JJ? JJ, what special day is it?

0:30:100:30:12

D'you know what special day it is?

0:30:120:30:16

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

0:30:160:30:21

Yay!

0:30:210:30:23

Ooh.

0:30:250:30:26

There's a birthday on Ladybird Ward

0:30:260:30:28

and they're taking the unusual step

0:30:280:30:30

of going out of the hospital for pizza.

0:30:300:30:32

Unfortunately, Holly's too unwell to join them.

0:30:320:30:38

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

0:30:410:30:43

the emergency pack for the bag,

0:30:430:30:45

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

0:30:450:30:49

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

0:30:490:30:53

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

0:30:530:30:56

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

0:30:560:31:00

Emergency equipment check.

0:31:000:31:02

-Four clamps.

-Yep.

0:31:020:31:05

-Orange power cable.

-Erm, attached to the mains.

0:31:050:31:08

Re-breathe bag. Oxygen tubing.

0:31:080:31:11

-Attached.

-Appropriate-sized mask?

-Yep.

0:31:110:31:14

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

0:31:140:31:17

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

-Ah, right.

0:31:170:31:20

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

0:31:200:31:23

The first time he's been out since January.

0:31:320:31:37

Now, what do you think?

0:31:500:31:52

You want food?

0:31:520:31:53

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

0:31:530:31:56

in the department.

0:31:560:31:59

If you have a very small number of children

0:32:000:32:03

who have very expensive treatment,

0:32:030:32:05

then it has a negative effect

0:32:050:32:08

on a hospital's budget,

0:32:080:32:09

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

0:32:090:32:12

while you're waiting for a heart transplant

0:32:120:32:15

is a very expensive thing to do.

0:32:150:32:18

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

0:32:180:32:21

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

0:32:210:32:24

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

0:32:240:32:27

but that isn't how we see it,

0:32:270:32:29

because we see truly positive results from children

0:32:290:32:34

who are extremely ill having successful cardiac transplants

0:32:340:32:38

and having extremely good quality of life.

0:32:380:32:40

MACHINE BEEPS ONCE

0:32:510:32:52

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

0:32:520:32:58

His heart reserve had fallen,

0:33:000:33:03

'he was much more breathless, exhausted and tired

0:33:030:33:06

'and had lost his appetite'

0:33:060:33:08

and that's a really bad sign.

0:33:080:33:10

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

0:33:100:33:14

'His liver was much bigger.

0:33:140:33:16

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

0:33:160:33:19

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

0:33:250:33:27

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

0:33:270:33:31

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

0:33:310:33:35

THEY MURMUR

0:33:380:33:40

There's no time to wait for a transplant.

0:33:400:33:42

The doctors decide to put Sol on a Berlin Heart.

0:33:420:33:46

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

0:33:470:33:52

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

0:33:540:33:58

After four hours,

0:34:250:34:26

surgeons have successfully installed the Berlin Heart.

0:34:260:34:30

We haven't done this before.

0:34:350:34:39

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

0:34:390:34:41

but we know the alternative is patient demise.

0:34:410:34:44

Faced with that reality,

0:34:440:34:48

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

0:34:480:34:52

erm, into the unknown, together with the parents

0:34:520:34:57

and the whole unit.

0:34:570:34:59

After the huge investment and effort,

0:34:590:35:03

doctors hope that it will not simply defer the inevitable.

0:35:030:35:07

'The more children that we support with the Berlin Heart

0:35:090:35:12

'and other mechanical devices,'

0:35:120:35:14

their only exit route from that whole process

0:35:140:35:17

is to have a heart transplant.

0:35:170:35:19

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

0:35:190:35:23

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

0:35:230:35:27

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

0:35:270:35:33

is to be able to increase donor numbers somehow.

0:35:330:35:36

What are you doing?

0:35:390:35:42

-I'm looking at the goldfish.

-There you go.

0:35:420:35:44

-Are you seeing them?

-Why can't we take that off?

0:35:440:35:47

-So we can see a fish.

-Have you seen the goldfish today?

0:35:470:35:51

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

0:36:000:36:04

from over 1,000 miles away in Europe.

0:36:040:36:07

It's a match for Ellie.

0:36:070:36:10

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

0:36:100:36:12

-Good to go.

-OK?

0:36:120:36:15

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

0:36:150:36:18

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

0:36:180:36:21

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

0:36:210:36:24

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

0:36:240:36:29

-OK. Yes.

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

0:36:290:36:33

OK?

0:36:330:36:35

'So happy for them.'

0:36:350:36:36

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

0:36:360:36:39

"That's never going to happen."

0:36:390:36:41

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

0:36:410:36:43

'because I was looking at them, going,

0:36:430:36:45

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

0:36:450:36:49

it wasn't going to happen

0:36:490:36:50

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

0:36:500:36:53

I was beginning to think

0:36:530:36:55

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

0:36:550:36:58

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

0:36:580:37:03

Having spent over five months on the Berlin Heart,

0:37:120:37:15

Ellie finally gets her chance.

0:37:150:37:19

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

0:37:470:37:50

So, heart's there.

0:38:020:38:05

And then paperwork's here.

0:38:070:38:09

Right, time to take out the old.

0:38:130:38:17

Take a look.

0:38:280:38:30

Still beating.

0:38:300:38:31

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

0:38:390:38:42

-there's a sad story behind it.

-Oh, yeah, absolutely.

0:38:420:38:46

Because the heart's been ischaemic

0:38:510:38:53

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

0:38:530:38:55

we've had to put some external pacing wires on

0:38:550:38:58

to try and get it to contract,

0:38:580:38:59

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

0:38:590:39:02

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

0:39:020:39:06

and it should take over its own contraction.

0:39:060:39:10

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

0:39:100:39:12

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

0:39:120:39:15

BEEPING

0:39:160:39:18

HE MUMBLES

0:39:180:39:21

I've no action,

0:39:290:39:31

no cardiac action for about a good 30 minutes.

0:39:310:39:34

I've never had that before.

0:39:340:39:37

It just said, "Still."

0:39:370:39:39

And you can see.

0:39:390:39:41

Don't fill any more?

0:39:440:39:46

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

0:39:460:39:48

BEEPING CONTINUES

0:39:480:39:50

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

0:39:500:39:53

That's bad...right?

0:39:530:39:56

You're putting in a new heart.

0:39:560:39:58

This heart is supposed to be healthy, vigorous, powerful

0:39:580:40:02

and after you establish blood flow,

0:40:020:40:05

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

0:40:050:40:09

then that's bad.

0:40:090:40:10

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

0:40:140:40:18

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

0:40:180:40:21

Fortunately it's been a young donor heart

0:40:210:40:23

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

0:40:230:40:28

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

0:40:280:40:31

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

0:40:310:40:35

So we'll be optimistic,

0:40:350:40:37

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

0:40:370:40:40

It's going to be a difficult night.

0:40:400:40:42

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

0:40:490:40:52

when there's a problem.

0:40:520:40:54

The surgeon is called back into theatre.

0:40:540:40:56

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

0:40:560:41:00

that suggests there's an RV failure here.

0:41:000:41:03

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

0:41:050:41:08

Oop, CV just dropped.

0:41:080:41:10

What's going on?

0:41:140:41:16

Suddenly, just bang.

0:41:160:41:18

Yeah.

0:41:180:41:19

That is just the strangest thing I have ever seen.

0:41:190:41:22

Weird.

0:41:230:41:26

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

0:41:290:41:32

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

0:41:320:41:36

So...touchy.

0:41:360:41:38

Oh, well. I wish I'd known.

0:41:410:41:43

After eight hours in surgery,

0:41:430:41:45

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

0:41:450:41:48

Now the truth.

0:41:520:41:53

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

0:41:580:42:02

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

0:42:020:42:09

the new heart typically starts to beat pretty quickly.

0:42:090:42:11

For some reason this heart was very sluggish.

0:42:110:42:16

In fact, it was inactive for about 30 minutes,

0:42:160:42:19

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

0:42:190:42:23

All of a sudden it got better.

0:42:230:42:25

Again, for no good reason.

0:42:250:42:27

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

0:42:270:42:30

the bottom line is that she's stable.

0:42:300:42:32

The numbers are good right now

0:42:320:42:35

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

0:42:350:42:40

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

0:42:400:42:46

The bleeding is under control.

0:42:460:42:48

Is that OK?

0:42:480:42:49

So it's another waiting game?

0:42:490:42:51

-Yes.

-OK.

0:42:510:42:52

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

0:42:540:42:58

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

0:42:590:43:05

After three days on cardiac intensive care,

0:43:350:43:38

Ellie's new heart is beating well

0:43:380:43:40

and the team are pleased with her progress.

0:43:400:43:42

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

0:43:480:43:52

That day was really difficult,

0:43:550:43:57

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

0:43:570:44:01

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

0:44:010:44:07

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

0:44:070:44:11

when it comes to the heart operation,

0:44:110:44:14

cos this was a lot more difficult than the transplant.

0:44:140:44:18

Definitely.

0:44:180:44:19

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

0:44:270:44:30

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

0:44:300:44:34

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

0:44:350:44:39

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

0:44:460:44:49

Brilliant, brilliant, thank you so much.

0:44:490:44:52

Thank you, I want to kiss you now!

0:44:520:44:54

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

0:44:540:44:56

Thank you so much.

0:44:560:44:58

All the donor team, or the donor.

0:44:580:45:00

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

-Oh, God, yeah.

0:45:000:45:03

OK? So everything looks good at the moment.

0:45:030:45:05

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

0:45:050:45:08

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

0:45:080:45:14

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

0:45:140:45:16

Going to theatre. So we need to tell him.

0:45:160:45:19

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

0:45:190:45:26

And...

0:45:280:45:29

It's very mixed emotions.

0:45:290:45:31

It's so mixed emotions.

0:45:310:45:33

-And it's normal.

-Yeah.

0:45:330:45:34

It is really normal to go through this.

0:45:340:45:36

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

0:45:360:45:39

They're all here waiting.

0:45:390:45:42

It's going to be fine.

0:45:440:45:46

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

0:45:460:45:49

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

0:45:560:45:59

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

0:46:050:46:08

'It's been really difficult for him waiting.

0:46:090:46:12

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

0:46:120:46:15

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

0:46:150:46:18

'that's going on around him,'

0:46:180:46:21

and it's not always pleasant.

0:46:210:46:22

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

0:46:220:46:25

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

0:46:250:46:28

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

0:46:280:46:31

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

0:46:310:46:35

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

0:46:350:46:38

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

0:46:400:46:44

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

0:46:440:46:46

but try and lay down for a little while?

0:46:460:46:48

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

0:46:480:46:53

SUCTION

0:46:540:46:57

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

0:47:200:47:24

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

0:47:240:47:28

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

0:47:280:47:32

The heart is a bit disappointing.

0:47:390:47:41

-We've got an ECMO.

-Yep, no worries.

0:47:450:47:47

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

0:47:480:47:54

that the heart does struggle to cope post-transplant

0:47:540:48:00

as it is here.

0:48:000:48:03

I'm not entirely sure why,

0:48:030:48:04

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

0:48:040:48:08

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

0:48:100:48:12

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

0:48:120:48:17

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

0:48:170:48:21

and then go up into ITU on ECMO.

0:48:210:48:23

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

0:48:270:48:33

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

0:48:340:48:38

gradually taking over from the ECMO machine.

0:48:380:48:40

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

0:48:440:48:49

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

0:48:490:48:53

with respect to the bypass circuit

0:48:530:48:55

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

0:48:550:48:58

And that's very frustrating.

0:48:580:49:01

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

0:49:130:49:16

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

0:49:160:49:19

-I know.

-All right?

-We know, we know.

-OK.

0:49:190:49:21

INDISTINCT CHATTER

0:49:340:49:37

Hey, Solly. Hey, soldier.

0:49:370:49:39

Hey, baby, you made it.

0:49:400:49:43

You made it, sweetheart, you made it.

0:49:430:49:46

You're going to be fine.

0:49:460:49:47

After three days,

0:49:560:49:58

attempts to take Sol off the ECMO machine have failed.

0:49:580:50:01

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

0:50:060:50:14

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

0:50:140:50:20

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

0:50:200:50:23

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

0:50:230:50:27

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

0:50:270:50:30

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

0:50:300:50:32

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

0:50:320:50:36

The average time that children would spend on

0:50:360:50:38

an ECMO machine is somewhere between seven and ten days.

0:50:380:50:42

When we're getting beyond 10-14 days,

0:50:420:50:45

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

0:50:450:50:50

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

0:50:520:50:56

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

0:50:560:51:00

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

0:51:000:51:03

We've been here before.

0:51:050:51:07

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

0:51:070:51:12

And that their hearts will work,

0:51:120:51:15

so we just need to hang in there

0:51:150:51:18

for a little bit longer for the time being.

0:51:180:51:20

We are right up against what's possible.

0:51:230:51:26

We've pushed the boundaries to try

0:51:260:51:27

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

0:51:270:51:31

And there's no question that Sol has lurched

0:51:310:51:34

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

0:51:340:51:38

That's why we're here.

0:51:380:51:41

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

0:51:410:51:44

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

0:51:440:51:48

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

0:51:480:51:52

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

0:52:070:52:11

if we've made the right decisions for Sol.

0:52:110:52:15

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

0:52:150:52:18

then it 's been worthwhile.

0:52:180:52:20

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

0:52:200:52:25

he...doesn't get through this,

0:52:250:52:28

or his quality of life is really very poor afterwards,

0:52:280:52:34

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

0:52:340:52:39

They were done in good faith.

0:52:390:52:41

Sol's case represents pushing the boundaries of cardiac transplantation

0:52:430:52:48

and Great Ormond Street Hospital and the cardiac unit

0:52:480:52:52

have always pushed the boundaries as far as is possible

0:52:520:52:55

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

0:52:550:52:57

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

0:52:590:53:05

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

0:53:080:53:13

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

0:53:140:53:20

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

0:53:200:53:23

He's still ventilated.

0:53:230:53:26

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

0:53:260:53:31

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

0:53:310:53:34

as a result of that.

0:53:340:53:35

It has been a massively traumatic event for his body.

0:53:350:53:39

Are you hot? Or are you cold?

0:53:420:53:45

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

0:53:470:53:50

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

0:53:500:53:54

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

0:53:540:53:58

Ellie has left Ladybird Ward

0:54:100:54:12

and moved into the hospital accommodation with her parents.

0:54:120:54:16

14 days after the transplant, she is going home.

0:54:160:54:21

We're talking about 12 medicines,

0:54:210:54:24

some of them given three times a day,

0:54:240:54:26

so there are three periods of drug-giving.

0:54:260:54:30

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

0:54:300:54:33

Part of our life, this is, syringes.

0:54:340:54:37

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

0:54:430:54:46

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

0:54:480:54:52

in some detail how she got the scar

0:54:520:54:53

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

0:54:530:54:57

Are you going?!

0:54:580:55:00

Ellie is going home today.

0:55:060:55:08

Ellie!

0:55:090:55:10

Those left on Ladybird, however,

0:55:100:55:12

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

0:55:120:55:14

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

0:55:140:55:17

Ellie!

0:55:180:55:20

Is she your friend?

0:55:230:55:25

Where is she going?

0:55:250:55:27

-Best of luck.

-And to you.

0:55:300:55:32

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

0:55:320:55:34

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

0:55:340:55:37

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

0:55:370:55:41

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

0:55:410:55:46

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

0:55:460:55:51

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

0:55:510:55:54

..well, anybody at all.

0:55:560:55:58

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

0:55:580:56:04

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

0:56:040:56:10

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

0:56:100:56:14

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

0:56:140:56:19

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

0:56:190:56:23

That's what we have to do.

0:56:230:56:25

-We'll be in touch.

-Yeah. Talk to you soon.

0:56:320:56:34

-Thank you!

-You'll be back on Wednesday!

0:56:360:56:39

Yeah!

0:56:390:56:40

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

0:56:400:56:43

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

0:56:430:56:48

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

0:56:480:56:52

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

0:56:520:56:55

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

0:56:550:56:57

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

0:56:570:57:02

The long-term outlook is now

0:57:050:57:07

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

0:57:070:57:12

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

0:57:120:57:16

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

0:57:170:57:22

IF you can get the donation.

0:57:220:57:24

Subtitles by Red Bee Media Ltd

0:58:220:58:25

This episode focuses on Great Ormond Street's heart transplant team. 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 for children for whom transplant is the last resort. The Berlin Heart is a revolutionary machine that keeps these children alive. However, it's a precarious existence as the machine can only buy them time until the rare gift of a heart is made.


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