0:00:02 > 0:00:08THIS PROGRAMME CONTAINS SCENES WHICH SOME VIEWERS MAY FIND UPSETTING
0:00:08 > 0:00:12Great Ormond Street Children's Hospital - for over 30 years,
0:00:12 > 0:00:16their heart transplant team have made dramatic advances.
0:00:16 > 0:00:18Life expectancy of the new organ
0:00:18 > 0:00:21has doubled over the years.
0:00:21 > 0:00:24But they face a huge problem.
0:00:24 > 0:00:27Every year, the number of donor hearts decreases.
0:00:28 > 0:00:31Safer roads, better intensive care
0:00:31 > 0:00:34and a society reluctant to donate,
0:00:34 > 0:00:36means fewer hearts and longer waits.
0:00:37 > 0:00:39Keeping somebody in hospital
0:00:39 > 0:00:41for three to six months while you're waiting for
0:00:41 > 0:00:44a heart transplant is a very expensive thing to do.
0:00:44 > 0:00:47More and more people will not make it to their transplantation
0:00:47 > 0:00:50and they will die while waiting.
0:00:50 > 0:00:53The medical team face a dilemma -
0:00:53 > 0:00:57while every parent believes their child should be the lucky one,
0:00:57 > 0:00:59doctors must weigh up the risk
0:00:59 > 0:01:01against their limited resources.
0:01:04 > 0:01:07He will ultimately get out of here
0:01:07 > 0:01:09in a good, healthy condition.
0:01:09 > 0:01:11We've got so much trust in the doctors here.
0:01:11 > 0:01:13They will get him through this.
0:01:23 > 0:01:26MONITOR BLEEPS
0:01:26 > 0:01:28VENTILATOR RASPS
0:01:31 > 0:01:33Two-year-old Holly Keogh
0:01:33 > 0:01:36has lived with a heart condition since birth.
0:01:36 > 0:01:39Last week she went into sudden heart failure
0:01:39 > 0:01:41and was flown from Ireland to Great Ormond Street's
0:01:41 > 0:01:45cardiac intensive care unit.
0:01:47 > 0:01:50She's been stable, she's been very calm,
0:01:50 > 0:01:53completely asleep,
0:01:53 > 0:01:55resting, almost like hibernation.
0:01:55 > 0:01:58I think she knows her family are there,
0:01:58 > 0:02:00because when they touch her hand,
0:02:00 > 0:02:03there's a minor change in her observations,
0:02:03 > 0:02:07but other than that, the machines are doing everything for her.
0:02:09 > 0:02:12With her heart failing, she needs a transplant,
0:02:12 > 0:02:14but she could die waiting.
0:02:16 > 0:02:18They've always said she's a little girl running round
0:02:18 > 0:02:19on a heart that doesn't work.
0:02:19 > 0:02:22Obviously, on a hell of a lot of medication,
0:02:22 > 0:02:25so that was helping too, but still, she was managing.
0:02:27 > 0:02:31She, basically, collapsed in my arms
0:02:31 > 0:02:36and a week later then we ended up over here.
0:02:36 > 0:02:40For her safety, the doctors have put her into an induced coma.
0:02:42 > 0:02:46When a doctor's telling you your daughter's at risk of sudden death,
0:02:46 > 0:02:48and you're in a hospital in intensive care,
0:02:48 > 0:02:51it's very scary, you get scared, because you're feeling
0:02:51 > 0:02:54this is the place where it shouldn't happen.
0:02:56 > 0:02:59While they wait for a donor heart to become available,
0:02:59 > 0:03:01their only option is to put Holly onto a machine
0:03:01 > 0:03:03called the Berlin Heart.
0:03:03 > 0:03:07This operation is as risky as a transplant itself.
0:03:15 > 0:03:17At its very basic level, it is just a pump
0:03:17 > 0:03:21and it works by taking blood away from the heart,
0:03:21 > 0:03:24and pumping it back into the body,
0:03:24 > 0:03:27in such a way that the heart goes, "Ahhh!
0:03:27 > 0:03:29"I don't have to do it!" and has a bit of a rest.
0:03:31 > 0:03:36In most situations here we're putting them in to support our patients
0:03:36 > 0:03:40until such time as they can get a heart transplant.
0:03:42 > 0:03:44We can't predict when that's going to happen.
0:03:44 > 0:03:47We wish we could, but we can't. We have to wait.
0:03:47 > 0:03:49LIFT BELL PINGS
0:03:49 > 0:03:50THEY CHATTER
0:04:00 > 0:04:03THEATRE NURSE: OK, so this is Holly Keogh.
0:04:03 > 0:04:07This girl's been listed for a while and been transferred
0:04:07 > 0:04:10urgently from Dublin with a deterioration. Ionotrope dependant.
0:04:10 > 0:04:13She's on a lot of antibiotics. She's had some teicoplanin from us.
0:04:13 > 0:04:16There's blood available. No allergies.
0:04:18 > 0:04:20CLOCK TICKS
0:04:26 > 0:04:28Despite the risks, the Berlin Heart
0:04:28 > 0:04:32has saved the lives of 46 children at Great Ormond Street,
0:04:32 > 0:04:35keeping them alive until a heart became available.
0:04:38 > 0:04:41These are handmade in Germany.
0:04:41 > 0:04:43Rather beautiful, isn't it?
0:04:44 > 0:04:47And 18,500 euros each.
0:04:48 > 0:04:50Cheap at half the price.
0:04:53 > 0:04:55When we started using these,
0:04:55 > 0:04:58we really wondered how children
0:04:58 > 0:05:01and families would just cope with what looks like a monstrosity
0:05:01 > 0:05:05sitting outside their children's tummy
0:05:05 > 0:05:08and it's full of blood.
0:05:08 > 0:05:11This part of the chamber is red because blood's coming in this way
0:05:11 > 0:05:12and going out that way.
0:05:12 > 0:05:16I'm always amazed, whatever disease process you have, how well
0:05:16 > 0:05:20children cope with it and how well their parents cope with it as well.
0:05:20 > 0:05:23I think it just reflects human nature
0:05:23 > 0:05:27and how well you can cope with almost anything life throws at you.
0:05:33 > 0:05:35At anything up to seven hours long,
0:05:35 > 0:05:38this procedure requires the surgical team to install and secure
0:05:38 > 0:05:43tubes into Holly's existing heart chambers, then subtly
0:05:43 > 0:05:45rebalance the pressures of her circulation.
0:05:45 > 0:05:47Think we'll go size nine, yes?
0:05:51 > 0:05:54WATER GURGLES SOFTLY
0:05:58 > 0:06:00SURGEON GIVES INSTRUCTIONS
0:06:05 > 0:06:10For this procedure, Holly was put on a heart bypass machine.
0:06:10 > 0:06:12It's running.
0:06:13 > 0:06:15Two hours into the operation,
0:06:15 > 0:06:18Holly is coming off bypass.
0:06:18 > 0:06:21Only now will the surgical team know if the Berlin Heart
0:06:21 > 0:06:23can keep her alive.
0:06:25 > 0:06:28When we first came off, the right ventricle was very dilated
0:06:28 > 0:06:30and the pressures were very low.
0:06:30 > 0:06:33She was really struggling.
0:06:33 > 0:06:36We've tried various manoeuvres, we've increased adrenaline,
0:06:36 > 0:06:39paced and back on bypass to give her heart a bit of a rest,
0:06:39 > 0:06:42come off again and actually everything's much, much better now.
0:06:42 > 0:06:46So, actually it's looking good at the moment, much better.
0:06:49 > 0:06:52The Berlin Heart has saved her life,
0:06:52 > 0:06:55but around 20% of the children on the device do not survive
0:06:55 > 0:06:56to transplant.
0:06:56 > 0:06:59From being listed for transplant,
0:06:59 > 0:07:02you could have a transplant within hours, which has happened to
0:07:02 > 0:07:06some of our patients, or you could wait up to a year or more.
0:07:06 > 0:07:09Unfortunately, there is a huge shortage of small organs
0:07:09 > 0:07:11in the country.
0:07:11 > 0:07:16She could potentially have to wait a good while for her new heart.
0:07:33 > 0:07:3611-year-old Sol Giorgio was diagnosed
0:07:36 > 0:07:40with a severely defective heart before he was even born.
0:07:41 > 0:07:43I've known him since prenatal life,
0:07:43 > 0:07:48from about 20 weeks of gestation, when he was found to have
0:07:48 > 0:07:50a big hole in between the two pumping chambers of the heart.
0:07:50 > 0:07:55The right and left pumping chambers were inverted.
0:07:56 > 0:08:00He's lived with a pacemaker and has been a regular visitor to
0:08:00 > 0:08:03the hospital where he's undergone numerous procedures.
0:08:03 > 0:08:07You never know when a boy chops his finger off
0:08:07 > 0:08:11whilst making a hamburger and needs a finger.
0:08:11 > 0:08:15He knows that he's here to be made better.
0:08:15 > 0:08:17He wants to go home because he misses his friends,
0:08:17 > 0:08:20he misses his room, he misses his house,
0:08:20 > 0:08:24but he knows that he's going to have some sort of operation.
0:08:24 > 0:08:26He doesn't need to know too much now,
0:08:26 > 0:08:28because he's 11 years old
0:08:28 > 0:08:30and some things, obviously you
0:08:30 > 0:08:34can tell him, and some things you may want to be a bit more careful.
0:08:36 > 0:08:39He's able to hold a normal conversation
0:08:39 > 0:08:43and is able to do things at rest.
0:08:43 > 0:08:47He's not really able to walk far, becomes breathless.
0:08:47 > 0:08:49He wouldn't manage a day at school.
0:08:49 > 0:08:51Two weeks ago,
0:08:51 > 0:08:55he came back to hospital as one of the valves in his heart was failing.
0:08:57 > 0:08:59The heart is not well enough
0:08:59 > 0:09:02for us to safely repair this valve at the moment.
0:09:02 > 0:09:06Therefore, we have to think of other forms of treatment for him
0:09:06 > 0:09:09and the other form of treatment that we have discussed
0:09:09 > 0:09:12and thought about was possibly transplantation.
0:09:12 > 0:09:16But because the left-hand side of the heart isn't working very well,
0:09:16 > 0:09:19the pressure in the right-hand side of the heart has increased,
0:09:19 > 0:09:22which makes him at high risk for transplantation.
0:09:24 > 0:09:26But the team face a dilemma.
0:09:26 > 0:09:29Recent tests showed that his irregular circulation
0:09:29 > 0:09:32could cause a transplant to fail,
0:09:32 > 0:09:35but if they do nothing, he will die.
0:09:35 > 0:09:38Doctors have changed his medication
0:09:38 > 0:09:41and are going to repeat the tests, hoping he'll have improved enough
0:09:41 > 0:09:43to be eligible for transplant.
0:09:43 > 0:09:47I feel really tired.
0:09:47 > 0:09:49NURSES CONFER
0:09:49 > 0:09:52Is it because of the medicine that you gave me?
0:09:52 > 0:09:54Yeah, makes you feel sleepy, doesn't it?
0:09:54 > 0:09:56It makes you feel relaxed.
0:10:01 > 0:10:04What I did need everybody to be aware of
0:10:04 > 0:10:06was just how high risk the anaesthetic had been,
0:10:06 > 0:10:09last time, or how stormy the anaesthetic had been last time
0:10:09 > 0:10:12and that this time it will be equally high risk.
0:10:12 > 0:10:15And so therefore, I wanted everybody to be aware
0:10:15 > 0:10:18that something bad could happen this afternoon
0:10:18 > 0:10:22and therefore we could stop the quality of life Sol had left to him
0:10:22 > 0:10:24and I just wanted to make sure that
0:10:24 > 0:10:29it was a genuine idea we really were going to find something different
0:10:29 > 0:10:32this time to make this worthwhile.
0:10:34 > 0:10:36'We've had a long discussion this morning
0:10:36 > 0:10:39'about how justifiable it was to do this investigation.
0:10:39 > 0:10:43'Reluctantly, I think, the anaesthetist has been persuaded'
0:10:43 > 0:10:45that the information would be important
0:10:45 > 0:10:48and does make a huge difference in how we might treat him.
0:10:50 > 0:10:53His parents have been very committed to this child,
0:10:53 > 0:10:55really, from early on in gestation.
0:10:55 > 0:10:59They knew there was a worrying outlook and therefore at this stage,
0:10:59 > 0:11:05they're not happy to give up and think Sol doesn't have a future.
0:11:05 > 0:11:07They still think that Sol has a future,
0:11:07 > 0:11:11even if it means doing quite invasive things to achieve that future.
0:11:26 > 0:11:30The data they collect will decide whether he's suitable for transplant.
0:11:35 > 0:11:38This is very hard to interpret. Breathe away again, please.
0:11:46 > 0:11:48The EDP's up at 29 and 30.
0:11:48 > 0:11:52- It's not good, I'm afraid.- OK.
0:11:53 > 0:11:56A bit disappointing.
0:11:56 > 0:11:59Well, it's very, because he looked better, didn't he?
0:11:59 > 0:12:03He's actually been behaving better and looking better.
0:12:04 > 0:12:06OK, so it's average between the 2.3...
0:12:06 > 0:12:10Dr Graham Derek will give Sol the gas nitric oxide,
0:12:10 > 0:12:15hoping it will open up the blood vessels and normalise his pressures.
0:12:17 > 0:12:19OK, injecting.
0:12:22 > 0:12:24- See you later.- Thanks.
0:12:28 > 0:12:30OK, go. We're ready.
0:12:38 > 0:12:41Now we just wait, just wait to see whether the medicine he inhaled,
0:12:41 > 0:12:46nitric oxide and the increased oxygen, makes a difference to the pressures.
0:12:46 > 0:12:50Can we just checked the zeroes again, please?
0:12:50 > 0:12:53It's down from 28 to 25.
0:12:53 > 0:12:56VOICE FADES OUT
0:12:56 > 0:13:00Half an hour later, the nitric oxide has worked and they have their data.
0:13:00 > 0:13:03The second set of figures are more promising.
0:13:04 > 0:13:10He isn't protecting himself, is he, from pulmonary oedema, by...
0:13:10 > 0:13:12Clamping down.
0:13:12 > 0:13:14Clamping down. Is he, is...
0:13:14 > 0:13:18Do the pulmonary veins respond to nitric oxygen?
0:13:18 > 0:13:20Gosh, I should know.
0:13:23 > 0:13:29He will ultimately get out of here in a good, healthy condition.
0:13:29 > 0:13:31And we know that. Some friends of mine have been asking,
0:13:31 > 0:13:35was there a chance he might lose, he might win?
0:13:35 > 0:13:38That never, honestly, has ever crossed my mind.
0:13:38 > 0:13:41We've got so much trust in the doctors here.
0:13:41 > 0:13:42They will get him through this.
0:13:42 > 0:13:46If it means getting him a new heart, then great.
0:13:48 > 0:13:51Would you not expect his cardiogram to go up?
0:13:51 > 0:13:55Yes, I would've thought it would go up, you see.... But it hasn't.
0:13:57 > 0:14:00Well, it's very difficult.
0:14:01 > 0:14:03I think this is do-able.
0:14:03 > 0:14:06It's a reasonable risk, I think, isn't it? On these numbers?
0:14:09 > 0:14:12Over the next few days, doctors will need to make a decision
0:14:12 > 0:14:15whether to list him for transplant or not.
0:14:25 > 0:14:27Within days on the Berlin Heart,
0:14:27 > 0:14:30there's been a dramatic change in Holly's condition.
0:14:30 > 0:14:34She's alert, she's active,
0:14:34 > 0:14:38she's almost, has also begun to mobilise,
0:14:38 > 0:14:42she stood up for the first time, I think, after coming to the ICU,
0:14:42 > 0:14:46has been asking for food and having some breakfast,
0:14:46 > 0:14:48so that's really good.
0:14:52 > 0:14:54Holly's now well enough to join a queue of children
0:14:54 > 0:14:58waiting for hearts on Ladybird Ward.
0:15:00 > 0:15:03- Mummy.- What's that?
0:15:08 > 0:15:09Mummy!
0:15:16 > 0:15:18What is it?
0:15:20 > 0:15:22Mummy!
0:15:24 > 0:15:28When the programme first began at Great Ormond Street in the 1980s,
0:15:28 > 0:15:31we didn't have anyway of looking after children
0:15:31 > 0:15:34who had end stage heart failure,
0:15:34 > 0:15:38other than drugs and using a ventilator to help their breathing.
0:15:38 > 0:15:40I can remember as a junior doctor
0:15:40 > 0:15:45seeing patients slowly fade away on the ward here.
0:15:45 > 0:15:47So all these children on the Berlin Heart,
0:15:47 > 0:15:52ten years ago, would be dead, if they were on the ward at that time.
0:15:53 > 0:15:55Bend it all the way, and kick.
0:15:55 > 0:16:00And bend it, and kick. And bend it, and kick.
0:16:00 > 0:16:02The Berlin Heart is keeping these children alive,
0:16:02 > 0:16:05but it's a strain on the hospital's resources.
0:16:05 > 0:16:08The children are confined to the hospital
0:16:08 > 0:16:12and there are serious dangers having a life supported mechanically.
0:16:13 > 0:16:18There's three big issues with this - bleeding, clotting and infection.
0:16:18 > 0:16:20Clots develop in the circuit
0:16:20 > 0:16:23and we have to change these chambers sometimes,
0:16:23 > 0:16:25but sometimes a big clot may occur very quickly
0:16:25 > 0:16:28and flick off into the circulation
0:16:28 > 0:16:31and strokes is one of the common issues
0:16:31 > 0:16:34with artificial pumps and artificial hearts.
0:16:36 > 0:16:42There are some children who sadly become very sick while on the Berlin Heart,
0:16:42 > 0:16:45have a major complication and do not survive.
0:16:45 > 0:16:49And in general, the longer you're on Berlin Heart,
0:16:49 > 0:16:53the more likely you are to have some sort of complication.
0:16:57 > 0:17:02Ellie arrived at Great Ormond Street after a virus irreversibly damaged her heart.
0:17:02 > 0:17:07She and her family have been confined to the hospital for over three months.
0:17:10 > 0:17:12104 days.
0:17:12 > 0:17:16Which is not as long
0:17:16 > 0:17:19as the longest person at Great Ormond Street Hospital.
0:17:19 > 0:17:22The longest a child's been on Berlin Heart is 228 days,
0:17:22 > 0:17:25so we've got a way to go, but we're not going for the record.
0:17:28 > 0:17:31We're well dug in now, I think is the way to look at it.
0:17:31 > 0:17:34We've got our routine sorted out.
0:17:34 > 0:17:39A lot of it is really just Ellie being two
0:17:39 > 0:17:45and us being parents and making sure we're good parents towards her.
0:17:45 > 0:17:49- Are you going to jump in the muddy puddles?- Yes!
0:17:49 > 0:17:51LAUGHTER AND APPLAUSE
0:17:51 > 0:17:54During her time on the ward, Ellie has had multiple infections
0:17:54 > 0:17:58and had four Berlin Heart chamber changes due to clotting.
0:17:58 > 0:18:00Clever girl.
0:18:00 > 0:18:03One undetected clot resulted in a stroke.
0:18:05 > 0:18:07Do your shoes light up?
0:18:07 > 0:18:11These devices really weren't, originally considered to be suitable
0:18:11 > 0:18:14for such long-term waits for transplant.
0:18:14 > 0:18:17We're lucky we haven't seen more complications with it.
0:18:17 > 0:18:20These poor children and their families
0:18:20 > 0:18:22are just having very long waits for transplant.
0:18:22 > 0:18:25Internationally, the figures are about one in four
0:18:25 > 0:18:27will never make it to transplant
0:18:27 > 0:18:31because of the complications, but you think everyone's doing,
0:18:31 > 0:18:34doing their best, but it's a really difficult situation.
0:18:38 > 0:18:42Without transplant, there isn't an exit strategy for these children
0:18:42 > 0:18:45and they will get to a stage, I'm sure
0:18:45 > 0:18:46and I think we're feeling very close to it,
0:18:46 > 0:18:52where we are unable to offer more support to the next child,
0:18:52 > 0:18:56because we haven't been able to move any of these other children along.
0:18:56 > 0:18:58Older children have shorter waits,
0:18:58 > 0:19:01as they can receive hearts from adult donors.
0:19:01 > 0:19:04The hearts of a size suitable for these children on Ladybird
0:19:04 > 0:19:07are the rarest of all.
0:19:08 > 0:19:12- What flavour ice pops would you like?- Orange.- Orange?
0:19:12 > 0:19:18- Would you like strawberry ones? - Yes.- Mmm...
0:19:18 > 0:19:20Holly, having just arrived, is at the back of the queue.
0:19:20 > 0:19:24- Do you want to sit up a little bit?- No.
0:19:24 > 0:19:26Today was a big day, because we only got told this morning
0:19:26 > 0:19:30that we were coming to the Ladybird Ward, so that was great.
0:19:30 > 0:19:32She's going to make new friends
0:19:32 > 0:19:35and hopefully enjoy herself as best we can.
0:19:35 > 0:19:38As best we can, isn't that right, baby? What, sweetheart.
0:19:38 > 0:19:44- I want to go home.- We will be going home, very soon, OK?
0:19:44 > 0:19:45OK?
0:19:45 > 0:19:51- You're the best girl, aren't you? - I don't want to stay here.- I know.
0:19:56 > 0:19:57Whoa!
0:19:57 > 0:20:01Sol has recovered from his investigation.
0:20:02 > 0:20:06And his parents are waiting to hear the decision from the team.
0:20:06 > 0:20:09Yes! I can turn back into a car again.
0:20:12 > 0:20:15We discussed Sol in whether we would accept him for a,
0:20:15 > 0:20:19will be a high risk heart transplant,
0:20:19 > 0:20:24or whether we would still consider whether he should be assisted
0:20:24 > 0:20:28while we're waiting for a graft to become available to him.
0:20:28 > 0:20:30That's what we need to discuss today.
0:20:30 > 0:20:34In an ideal world, if there were no complications to assist,
0:20:34 > 0:20:38that would be the safest thing. He would assisted and listed,
0:20:38 > 0:20:43but the complications of assist, we need to balance against that.
0:20:43 > 0:20:47Also, how he is now, really, he's reasonably stable and prepared.
0:20:47 > 0:20:50But I think the risk, I mean,
0:20:50 > 0:20:52it's still not without significant risk,
0:20:52 > 0:20:54bringing on a broken heart, is it?
0:20:54 > 0:21:00The chances are, we would accept him at a higher risk for transplant now.
0:21:00 > 0:21:04So, I wouldn't do it a Berlin Heart, personally. What do you feel?
0:21:05 > 0:21:10Yes. I think this data's been very helpful. He has improved on the ward.
0:21:10 > 0:21:16But he's a much better patient now and is lower risk, I think,
0:21:16 > 0:21:19as a result of what's happened with the bed rest and the moving on in time.
0:21:21 > 0:21:24- I'm very encouraged by this, I must say.- Mmm.- Very pleased.
0:21:24 > 0:21:26VOICES FADE OUT
0:21:30 > 0:21:33Doctors decide to list Sol for transplant.
0:21:35 > 0:21:37They must discuss this with the family
0:21:37 > 0:21:40and convince them this is the right thing to do.
0:21:46 > 0:21:50- I'm Matthew.- Nice to meet you. - Hi, you all right?
0:21:50 > 0:21:54Transplant isn't something that you want to do for any family,
0:21:54 > 0:21:55but if a child is sick enough
0:21:55 > 0:21:58and there isn't any other treatment option available,
0:21:58 > 0:22:02then ultimately, transplant is the only thing left to some families.
0:22:02 > 0:22:06They just need to take away the basics, that this isn't a cure.
0:22:06 > 0:22:09This is a treatment option that's going to give, hopefully,
0:22:09 > 0:22:12a really good quality of life for a longer amount of time
0:22:12 > 0:22:14than they would have without a transplant.
0:22:14 > 0:22:17It's a teamwork thing, so we need to have a conversation about
0:22:17 > 0:22:19what it means to have a transplant,
0:22:19 > 0:22:23what the quality-of-life is. I don't know whether Dr Birch covered all that,
0:22:23 > 0:22:26things that can go wrong and all those sorts of things,
0:22:26 > 0:22:28- so you can make a decision... - Not in too much detail.
0:22:28 > 0:22:33He gave us the, you know, what certain risks there could be,
0:22:33 > 0:22:39- things like kidney failure. - Yes.- Or some kind of cancer.
0:22:39 > 0:22:41So we've mentioned some of the major things
0:22:41 > 0:22:43which can go wrong after transplant,
0:22:43 > 0:22:47and did Dr Birch tell you about life expectancy after transplant?
0:22:47 > 0:22:52- No, he didn't. - So, if you take ten people now,
0:22:52 > 0:22:54you gave them a transplant,
0:22:54 > 0:22:57in 15 to 20 years' time, only half of those,
0:22:57 > 0:23:00seven, five to five seven of those would be alive at that point.
0:23:00 > 0:23:06So, survival is, for that particular graft, is 15, 20 years.
0:23:06 > 0:23:10When you talk about life expectancy, it's such a big thing to face...
0:23:10 > 0:23:12It's quite a long way away.
0:23:12 > 0:23:15As far as medical research is concerned and medical change,
0:23:15 > 0:23:18there's still, there's still potential for change.
0:23:18 > 0:23:23We want him to feel as normal as possible growing up,
0:23:23 > 0:23:26cos he's still only 11 and he hasn't, he's...
0:23:26 > 0:23:29Physically, he's had a limited childhood.
0:23:29 > 0:23:31Intellectually, he's been up there,
0:23:31 > 0:23:33he's done very well, we're so proud of him,
0:23:33 > 0:23:36but he's never been able to run and really commit himself physically.
0:23:36 > 0:23:42We just want him to have a normal, normal teenage years. Really...
0:23:42 > 0:23:47- Well, a normal life.- Normal, healthy life. Yes, of course.
0:23:47 > 0:23:51And then we come down to how we talk to him about it
0:23:51 > 0:23:54and how we do that, and that's for you to kind of think about.
0:23:54 > 0:23:57Sometimes it's a bit like saying you have a car that's not working
0:23:57 > 0:24:00and you need to change the engine, it just needs a new engine
0:24:00 > 0:24:03and we expect he'll have a really good quality of life afterwards
0:24:03 > 0:24:06and he'll go to school and he'll be able to play football,
0:24:06 > 0:24:09all those things and we look at the positive side and try not to frighten him.
0:24:09 > 0:24:13If you feel comfortable, I would like to talk to him today,
0:24:13 > 0:24:17because the longer you, this as a conversation rather than me saying,
0:24:17 > 0:24:20I would like to get him on the list as soon as possible
0:24:20 > 0:24:23and we're in a position to be able to list him today.
0:24:23 > 0:24:28We have the antibodies back and there were very few, but I don't want to push you too hard.
0:24:28 > 0:24:32- Can we take our time? - Yes, you've got to feel comfortable. - Don't want to give a decision now.
0:24:32 > 0:24:37No, fine. You've got to feel comfortable with it. Absolutely. Absolutely.
0:24:37 > 0:24:40He's just gone through a lot in the last 24 hours.
0:24:40 > 0:24:42To throw this at him now
0:24:42 > 0:24:46is going to be too much for an 11-year-old to take on.
0:24:46 > 0:24:49- Yes?- Good.- Thank you.
0:24:49 > 0:24:52'Really, their minds are working overtime, thinking,'
0:24:52 > 0:24:54"how have I ended up in this situation?
0:24:54 > 0:24:56"I can't believe we're here."
0:24:56 > 0:25:00Very often you have to repeat things quite a few times just so you're sure
0:25:00 > 0:25:03that they know exactly what they're getting themselves into.
0:25:03 > 0:25:05It's not because they're not listening.
0:25:05 > 0:25:08It's purely because their minds are working overtime,
0:25:08 > 0:25:11thinking of all the other things in their lives
0:25:11 > 0:25:13that are going to be affected by this one decision.
0:25:13 > 0:25:15So, it's pretty tough for them.
0:25:15 > 0:25:20You don't have to tell him today. I'll be very, very clear about that.
0:25:20 > 0:25:24The issue is, if you don't tell him today, he can't be listed today.
0:25:24 > 0:25:27If we talk to him on Monday then we can list him first thing Monday,
0:25:27 > 0:25:32but that's the only thing that... If you're happy for him not to,
0:25:32 > 0:25:36then that's fine. We're happy for him not to be told today,
0:25:36 > 0:25:40it just means that he won't be able... If a heart came along,
0:25:40 > 0:25:42he wouldn't be able to have it.
0:25:42 > 0:25:44So...
0:25:44 > 0:25:46OK. Got it.
0:25:46 > 0:25:50The parents have asked Dr Rob Yates to explain to Sol
0:25:50 > 0:25:52why he needs a transplant.
0:25:53 > 0:25:57When I first saw the information from the test
0:25:57 > 0:25:58I was a bit worried,
0:25:58 > 0:26:02but after we'd done some further tests and that kind Dr Derek
0:26:02 > 0:26:05had done some further tests,
0:26:05 > 0:26:07it actually looked a whole heap better
0:26:07 > 0:26:09so that's really good news.
0:26:09 > 0:26:12But even with that getting better,
0:26:12 > 0:26:17we still think that the problems in your heart are such
0:26:17 > 0:26:20that it's not going to be possible to fix it
0:26:20 > 0:26:23with a straightforward operation. Yeah?
0:26:23 > 0:26:31But we do think that it would be possible to think about doing a transplant operation instead, OK?
0:26:31 > 0:26:37Now, that's a big step. I know that that's been said to you already...
0:26:37 > 0:26:39It's all right, it's fine.
0:26:39 > 0:26:42- He's doing OK. You're doing really, really well.- Good boy.
0:26:42 > 0:26:44You're fine.
0:26:44 > 0:26:49We're proud of you for what you've gone through
0:26:49 > 0:26:53and for being so brave about it, all right?
0:26:53 > 0:26:56It's OK. There's some really good things about that, too,
0:26:56 > 0:27:00because it would mean that you wouldn't need a new pacemaker box.
0:27:00 > 0:27:05If everything went fine, I would never need another operation.
0:27:05 > 0:27:08Erm, I would hope that you wouldn't need another operation,
0:27:08 > 0:27:12I can't promise. The likelihood would be small.
0:27:12 > 0:27:15OK?
0:27:15 > 0:27:20When my old one's out, how long will it be out for?
0:27:21 > 0:27:26Sometimes it's difficult for us to put hearts in children who've had lots of operations before
0:27:26 > 0:27:30and the old heart has to be out for several hours
0:27:30 > 0:27:33before we can put the new one in.
0:27:33 > 0:27:36- You know when I wake up?- Yep. - When I wake up...
0:27:36 > 0:27:40will I feel that I have a new heart
0:27:40 > 0:27:44- or will I feel as I did when I went to sleep? - You will feel just as you did
0:27:44 > 0:27:46when you went to sleep,
0:27:46 > 0:27:49but I hope that you'll feel healthier and better.
0:27:49 > 0:27:51OK?
0:27:51 > 0:27:56- OK.- All right? - It's just like a normal operation,
0:27:56 > 0:28:00- except it'll last a bit longer. - A bit longer, a bit bigger,
0:28:00 > 0:28:03but we think that this is the best way forward for you.
0:28:05 > 0:28:06OK?
0:28:06 > 0:28:08We have a plan now.
0:28:08 > 0:28:10We know where we're going.
0:28:10 > 0:28:13I think it's been jolly difficult for Mum and Dad
0:28:13 > 0:28:15because they haven't known what we're going to do
0:28:15 > 0:28:17and when we're going to do it.
0:28:17 > 0:28:19- My friend had cancer...- Mm.
0:28:19 > 0:28:23..and what's more important, this or cancer?
0:28:23 > 0:28:27They're just as important. There isn't a more important bit.
0:28:27 > 0:28:29Didn't he come to see you this morning?
0:28:29 > 0:28:32- Look how fit and well he looked. - Yeah, exactly.
0:28:32 > 0:28:34And he played with you.
0:28:34 > 0:28:38So... All right, OK, OK.
0:28:38 > 0:28:41- It's going to be fine.- Hey, hey, hey. It's all right. It's fine.
0:28:41 > 0:28:46You've been brave up to this point and you can be brave from here on.
0:28:46 > 0:28:50- SOL WAILS OK, all right. - It's all right, nobody's going away.
0:28:50 > 0:28:53I'm not going anywhere, OK?
0:28:53 > 0:28:59It's all good. It's all good. You're just going to get better and better and better and better and better, OK?
0:28:59 > 0:29:02Shall we stop... Do you have any other questions?
0:29:02 > 0:29:04At the moment?
0:29:05 > 0:29:08- I have one more question.- Yeah.
0:29:08 > 0:29:14- Do you like my Ferrari F50?- I do. Yeah, I like your Ferrari F50.
0:29:15 > 0:29:17Very smart. You've been very brave.
0:29:17 > 0:29:22- He's been very good.- Yeah, he's been really good.- He'd done really well.
0:29:22 > 0:29:26'It's been hard work. It's been a real team effort.'
0:29:26 > 0:29:32When we try and do transplants in children with difficult heart problems
0:29:32 > 0:29:35in whom the transplant is high-risk,
0:29:35 > 0:29:38then making a decision to do a transplant
0:29:38 > 0:29:41when not very many transplants happen
0:29:41 > 0:29:46and high-risk transplants mean that the recipient may not get such benefit
0:29:46 > 0:29:49from the transplanted organ as someone who's not high-risk,
0:29:49 > 0:29:52is a very difficult decision to make.
0:29:52 > 0:29:58It's a scarce resource and it's one of the resources
0:29:58 > 0:30:03which is not financially, but is by necessity, rationed within the NHS
0:30:03 > 0:30:08and there is no way round that. So it is a very difficult decision.
0:30:10 > 0:30:12JJ? JJ, what special day is it?
0:30:12 > 0:30:16D'you know what special day it is?
0:30:16 > 0:30:21Can you remember? Shall I tell you, J? It's my birthday!
0:30:21 > 0:30:23Yay!
0:30:25 > 0:30:26Ooh.
0:30:26 > 0:30:28There's a birthday on Ladybird Ward
0:30:28 > 0:30:30and they're taking the unusual step
0:30:30 > 0:30:32of going out of the hospital for pizza.
0:30:32 > 0:30:38Unfortunately, Holly's too unwell to join them.
0:30:41 > 0:30:43We're just checking that we've got everything -
0:30:43 > 0:30:45the emergency pack for the bag,
0:30:45 > 0:30:49erm, it's been so long since we've been outside the hospital
0:30:49 > 0:30:53that we don't even have a nappy bag or proper nappy wipes or anything.
0:30:53 > 0:30:56We've forgotten the type of things we used to take out with us.
0:30:56 > 0:31:00Yeah, we've forgotten the routine of life, so we're just improvising.
0:31:00 > 0:31:02Emergency equipment check.
0:31:02 > 0:31:05- Four clamps.- Yep.
0:31:05 > 0:31:08- Orange power cable. - Erm, attached to the mains.
0:31:08 > 0:31:11Re-breathe bag. Oxygen tubing.
0:31:11 > 0:31:14- Attached.- Appropriate-sized mask? - Yep.
0:31:14 > 0:31:17When that's switched on, you'll get a little green light.
0:31:17 > 0:31:20- You're drawing on the battery, it's not a "charged" light.- Ah, right.
0:31:20 > 0:31:23Ignore that completely, there is no charge indicator on the battery.
0:31:32 > 0:31:37The first time he's been out since January.
0:31:50 > 0:31:52Now, what do you think?
0:31:52 > 0:31:53You want food?
0:31:53 > 0:31:56As a group, the Berlin Heart children are the most expensive
0:31:56 > 0:31:59in the department.
0:32:00 > 0:32:03If you have a very small number of children
0:32:03 > 0:32:05who have very expensive treatment,
0:32:05 > 0:32:08then it has a negative effect
0:32:08 > 0:32:09on a hospital's budget,
0:32:09 > 0:32:12and keeping somebody in hospital for three-to-six months
0:32:12 > 0:32:15while you're waiting for a heart transplant
0:32:15 > 0:32:18is a very expensive thing to do.
0:32:18 > 0:32:21There we go, some pizza and a little bit of chicken.
0:32:21 > 0:32:24'Some people might think we're crazy to be doing this,'
0:32:24 > 0:32:27you know, that this is a complete waste of money,
0:32:27 > 0:32:29but that isn't how we see it,
0:32:29 > 0:32:34because we see truly positive results from children
0:32:34 > 0:32:38who are extremely ill having successful cardiac transplants
0:32:38 > 0:32:40and having extremely good quality of life.
0:32:51 > 0:32:52MACHINE BEEPS ONCE
0:32:52 > 0:32:58Over the last few days, Sol's taken a turn for the worse.
0:33:00 > 0:33:03His heart reserve had fallen,
0:33:03 > 0:33:06'he was much more breathless, exhausted and tired
0:33:06 > 0:33:08'and had lost his appetite'
0:33:08 > 0:33:10and that's a really bad sign.
0:33:10 > 0:33:14When you stop eating when you've got heart failure, that's a bad sign.
0:33:14 > 0:33:16'His liver was much bigger.
0:33:16 > 0:33:19'He was not going to wait much longer for a transplant.'
0:33:25 > 0:33:27So he doesn't... He gets one beat,
0:33:27 > 0:33:31but he can't produce an output on the second beat, which...
0:33:31 > 0:33:35He's not filling enough to, maybe... I don't know. On that second beat...
0:33:38 > 0:33:40THEY MURMUR
0:33:40 > 0:33:42There's no time to wait for a transplant.
0:33:42 > 0:33:46The doctors decide to put Sol on a Berlin Heart.
0:33:47 > 0:33:52They've never used it to support someone with such a complex condition before.
0:33:54 > 0:33:58But he's dying, so there's no other option.
0:34:25 > 0:34:26After four hours,
0:34:26 > 0:34:30surgeons have successfully installed the Berlin Heart.
0:34:35 > 0:34:39We haven't done this before.
0:34:39 > 0:34:41We don't really know how it's going to work out
0:34:41 > 0:34:44but we know the alternative is patient demise.
0:34:44 > 0:34:48Faced with that reality,
0:34:48 > 0:34:52it was a step that we were all willing to take,
0:34:52 > 0:34:57erm, into the unknown, together with the parents
0:34:57 > 0:34:59and the whole unit.
0:34:59 > 0:35:03After the huge investment and effort,
0:35:03 > 0:35:07doctors hope that it will not simply defer the inevitable.
0:35:09 > 0:35:12'The more children that we support with the Berlin Heart
0:35:12 > 0:35:14'and other mechanical devices,'
0:35:14 > 0:35:17their only exit route from that whole process
0:35:17 > 0:35:19is to have a heart transplant.
0:35:19 > 0:35:23'So there's going to be a point where we're going to see
0:35:23 > 0:35:27'that people coming into the unit to be provided with that support'
0:35:27 > 0:35:33are going to be stuck because there's not enough donors, and what we really need
0:35:33 > 0:35:36is to be able to increase donor numbers somehow.
0:35:39 > 0:35:42What are you doing?
0:35:42 > 0:35:44- I'm looking at the goldfish. - There you go.
0:35:44 > 0:35:47- Are you seeing them? - Why can't we take that off?
0:35:47 > 0:35:51- So we can see a fish. - Have you seen the goldfish today?
0:36:00 > 0:36:04Overnight, the team have finally had an offer of a heart
0:36:04 > 0:36:07from over 1,000 miles away in Europe.
0:36:07 > 0:36:10It's a match for Ellie.
0:36:10 > 0:36:12OK. Had the call, it's good to go.
0:36:12 > 0:36:15- Good to go.- OK?
0:36:15 > 0:36:18They're still in theatre, they've viewed the heart,
0:36:18 > 0:36:21the heart looks good. They're not leaving just yet,
0:36:21 > 0:36:24I need to let theatres know that they're all good to go and get up and running,
0:36:24 > 0:36:29but we'll probably be going to theatre in the next 10, 15 minutes, I would have thought.
0:36:29 > 0:36:33- OK. Yes.- Fantastic. That's fantastic news, that really is.
0:36:33 > 0:36:35OK?
0:36:35 > 0:36:36'So happy for them.'
0:36:36 > 0:36:39Pure relief, because they've had five months of, they were like,
0:36:39 > 0:36:41"That's never going to happen."
0:36:41 > 0:36:43'As well as that, it was relief as well on my behalf,
0:36:43 > 0:36:45'because I was looking at them, going,
0:36:45 > 0:36:49' "God, it can happen," because I was beginning to believe'
0:36:49 > 0:36:50it wasn't going to happen
0:36:50 > 0:36:53because we had three children all at a very close, similar age.
0:36:53 > 0:36:55I was beginning to think
0:36:55 > 0:36:58'that this age group was just going to build up and build up.
0:36:58 > 0:37:03'Now at least there's a chance, maybe, Holly might get one.'
0:37:12 > 0:37:15Having spent over five months on the Berlin Heart,
0:37:15 > 0:37:19Ellie finally gets her chance.
0:37:47 > 0:37:50OK, let's do it. Do it to it.
0:38:02 > 0:38:05So, heart's there.
0:38:07 > 0:38:09And then paperwork's here.
0:38:13 > 0:38:17Right, time to take out the old.
0:38:28 > 0:38:30Take a look.
0:38:30 > 0:38:31Still beating.
0:38:39 > 0:38:42It's kind of sad. For every heart you get,
0:38:42 > 0:38:46- there's a sad story behind it. - Oh, yeah, absolutely.
0:38:51 > 0:38:53Because the heart's been ischaemic
0:38:53 > 0:38:55for a period of time and has lost its own innovation,
0:38:55 > 0:38:58we've had to put some external pacing wires on
0:38:58 > 0:38:59to try and get it to contract,
0:38:59 > 0:39:02so we're pacing it at the moment to stimulate it to beat
0:39:02 > 0:39:06and hopefully, once it's sorted itself out, we turn off the pacing
0:39:06 > 0:39:10and it should take over its own contraction.
0:39:10 > 0:39:12It may take 24 hours, it may take a few hours,
0:39:12 > 0:39:15it may take a few minutes, it just needs time to recover.
0:39:16 > 0:39:18BEEPING
0:39:18 > 0:39:21HE MUMBLES
0:39:29 > 0:39:31I've no action,
0:39:31 > 0:39:34no cardiac action for about a good 30 minutes.
0:39:34 > 0:39:37I've never had that before.
0:39:37 > 0:39:39It just said, "Still."
0:39:39 > 0:39:41And you can see.
0:39:44 > 0:39:46Don't fill any more?
0:39:46 > 0:39:48Yeah, don't fill any more. Oh, jeez.
0:39:48 > 0:39:50BEEPING CONTINUES
0:39:50 > 0:39:53'It wasn't beating. It was just still.'
0:39:53 > 0:39:56That's bad...right?
0:39:56 > 0:39:58You're putting in a new heart.
0:39:58 > 0:40:02This heart is supposed to be healthy, vigorous, powerful
0:40:02 > 0:40:05and after you establish blood flow,
0:40:05 > 0:40:09when this new heart gets blood flow, it is still...
0:40:09 > 0:40:10then that's bad.
0:40:14 > 0:40:18He was very concerned that the heart took some time to get going
0:40:18 > 0:40:21and initially, really, there wasn't very much cardiac activity.
0:40:21 > 0:40:23Fortunately it's been a young donor heart
0:40:23 > 0:40:28and young hearts will improve even though they've been under
0:40:28 > 0:40:31quite a lot of stress, there's been travel time,
0:40:31 > 0:40:35I think there's still a good chance things are going to work out here.
0:40:35 > 0:40:37So we'll be optimistic,
0:40:37 > 0:40:40but still, I think we have to be a little bit cautious.
0:40:40 > 0:40:42It's going to be a difficult night.
0:40:49 > 0:40:52They're about to take Ellie up to intensive care for recovery
0:40:52 > 0:40:54when there's a problem.
0:40:54 > 0:40:56The surgeon is called back into theatre.
0:40:56 > 0:41:00It's a combination of high CV and low blood pressure
0:41:00 > 0:41:03that suggests there's an RV failure here.
0:41:05 > 0:41:08Yeah... It was just so sudden, it was like mechanical.
0:41:08 > 0:41:10Oop, CV just dropped.
0:41:14 > 0:41:16What's going on?
0:41:16 > 0:41:18Suddenly, just bang.
0:41:18 > 0:41:19Yeah.
0:41:19 > 0:41:22That is just the strangest thing I have ever seen.
0:41:23 > 0:41:26Weird.
0:41:29 > 0:41:32The pressure started to drop and then we were opening the chest,
0:41:32 > 0:41:36there's not that much bleeding, and all of a sudden it got better.
0:41:36 > 0:41:38So...touchy.
0:41:41 > 0:41:43Oh, well. I wish I'd known.
0:41:43 > 0:41:45After eight hours in surgery,
0:41:45 > 0:41:48TY, the surgeon, wants to speak to the parents.
0:41:52 > 0:41:53Now the truth.
0:41:58 > 0:42:02The surgery itself went fine. The thing is, though,
0:42:02 > 0:42:09typically when you release the clamp to allow blood to fill the new heart,
0:42:09 > 0:42:11the new heart typically starts to beat pretty quickly.
0:42:11 > 0:42:16For some reason this heart was very sluggish.
0:42:16 > 0:42:19In fact, it was inactive for about 30 minutes,
0:42:19 > 0:42:23and that's a little unusual, so that raised a little bit the alarm bell.
0:42:23 > 0:42:25All of a sudden it got better.
0:42:25 > 0:42:27Again, for no good reason.
0:42:27 > 0:42:30I couldn't tell you why, so what you need to know,
0:42:30 > 0:42:32the bottom line is that she's stable.
0:42:32 > 0:42:35The numbers are good right now
0:42:35 > 0:42:40and she's on a moderate amount of support with drugs.
0:42:40 > 0:42:46She's off the Berlin Heart. She doesn't probably need ECMO right now.
0:42:46 > 0:42:48The bleeding is under control.
0:42:48 > 0:42:49Is that OK?
0:42:49 > 0:42:51So it's another waiting game?
0:42:51 > 0:42:52- Yes.- OK.
0:42:54 > 0:42:58Well, thank you for doing what you've done, you must be tired.
0:42:59 > 0:43:05This is a healthy heart. It SHOULD recover just with some TLC, I guess.
0:43:35 > 0:43:38After three days on cardiac intensive care,
0:43:38 > 0:43:40Ellie's new heart is beating well
0:43:40 > 0:43:42and the team are pleased with her progress.
0:43:48 > 0:43:52Sol, now on the Berlin Heart, is weak but stable.
0:43:55 > 0:43:57That day was really difficult,
0:43:57 > 0:44:01but once we overcame that and we see how well he's doing,
0:44:01 > 0:44:07then I think to myself, now I know that he's looking after us upstairs,
0:44:07 > 0:44:11and you know, at the same time I know it's going to be fine
0:44:11 > 0:44:14when it comes to the heart operation,
0:44:14 > 0:44:18cos this was a lot more difficult than the transplant.
0:44:18 > 0:44:19Definitely.
0:44:27 > 0:44:30It's 1am and after a three-week wait for Sol,
0:44:30 > 0:44:34his parents have been told a donor organ might be available.
0:44:35 > 0:44:39A team has been sent out to check the donor heart is suitable.
0:44:46 > 0:44:49It's very good news... the heart's fine.
0:44:49 > 0:44:52Brilliant, brilliant, thank you so much.
0:44:52 > 0:44:54Thank you, I want to kiss you now!
0:44:54 > 0:44:56LAUGHING: Don't kiss me, I've done nothing!
0:44:56 > 0:44:58Thank you so much.
0:44:58 > 0:45:00All the donor team, or the donor.
0:45:00 > 0:45:03- Without the donor we wouldn't be in this position. - Oh, God, yeah.
0:45:03 > 0:45:05OK? So everything looks good at the moment.
0:45:05 > 0:45:08The surgical team up there are more than happy with the heart function.
0:45:08 > 0:45:14It will be a while before we go to theatre, probably about an hour.
0:45:14 > 0:45:16That's fine. That's fine...
0:45:16 > 0:45:19Going to theatre. So we need to tell him.
0:45:19 > 0:45:26I feel, personally, excited, but worried, obviously.
0:45:28 > 0:45:29And...
0:45:29 > 0:45:31It's very mixed emotions.
0:45:31 > 0:45:33It's so mixed emotions.
0:45:33 > 0:45:34- And it's normal.- Yeah.
0:45:34 > 0:45:36It is really normal to go through this.
0:45:36 > 0:45:39And the medical team that are doing it are...
0:45:39 > 0:45:42They're all here waiting.
0:45:44 > 0:45:46It's going to be fine.
0:45:46 > 0:45:49He's going to be playing football sooner than we know.
0:45:56 > 0:45:59I'll just pop my head in and make sure he's decent.
0:46:05 > 0:46:08I need to get you into one of these sexy gowns in a minute, OK?
0:46:09 > 0:46:12'It's been really difficult for him waiting.
0:46:12 > 0:46:15'Especially since he's been on intensive care for a while now
0:46:15 > 0:46:18'and he is awake and up and about so he is absorbing everything
0:46:18 > 0:46:21'that's going on around him,'
0:46:21 > 0:46:22and it's not always pleasant.
0:46:22 > 0:46:25So I think he'll be happy that he can have a heart
0:46:25 > 0:46:28and potentially get out of intensive care and get home, but I think
0:46:28 > 0:46:31he's also going to be very worried and very scared,
0:46:31 > 0:46:35like he has normally going into his anaesthetics that he's previously had,
0:46:35 > 0:46:38and I think you know, he's got reason to be worried.
0:46:40 > 0:46:44Do you guys want to go up to the family room or do you want to
0:46:44 > 0:46:46go to the flat and, I know it sounds funny,
0:46:46 > 0:46:48but try and lay down for a little while?
0:46:48 > 0:46:53It's probably going to be at least 4-5 hours before we see anything, OK?
0:46:54 > 0:46:57SUCTION
0:47:20 > 0:47:24The bleeding is now becoming horrendous. It's a nightmare here.
0:47:24 > 0:47:28After ten hours of surgery, there's been a change of theatre team
0:47:28 > 0:47:32and the parents are being told that the transplant is not going to plan.
0:47:39 > 0:47:41The heart is a bit disappointing.
0:47:45 > 0:47:47- We've got an ECMO. - Yep, no worries.
0:47:48 > 0:47:54The new heart, for reasons I don't understand, it's often a risk
0:47:54 > 0:48:00that the heart does struggle to cope post-transplant
0:48:00 > 0:48:03as it is here.
0:48:03 > 0:48:04I'm not entirely sure why,
0:48:04 > 0:48:08but clearly this new heart isn't doing well enough at the moment...
0:48:10 > 0:48:12..to allow us to let it take over completely.
0:48:12 > 0:48:17So we're going to convert the bypass circuit to ECMO.
0:48:17 > 0:48:21It'll take us the best part of an hour to get all that sorted out,
0:48:21 > 0:48:23and then go up into ITU on ECMO.
0:48:27 > 0:48:33The ECMO machine will breathe for Sol and pump blood around his body.
0:48:34 > 0:48:38Given time, it's hoped Sol's new heart will strengthen,
0:48:38 > 0:48:40gradually taking over from the ECMO machine.
0:48:44 > 0:48:49My fears are that it's not going to work or he's not going to wake up, I guess.
0:48:49 > 0:48:53Or he has another complication from the procedures we're doing
0:48:53 > 0:48:55with respect to the bypass circuit
0:48:55 > 0:48:58and the ECMO circuit which means that he's severely affected.
0:48:58 > 0:49:01And that's very frustrating.
0:49:13 > 0:49:16Just remember when you see him today, he's not been well,
0:49:16 > 0:49:19he's had a long day, and he's not going to look well.
0:49:19 > 0:49:21- I know.- All right? - We know, we know.- OK.
0:49:34 > 0:49:37INDISTINCT CHATTER
0:49:37 > 0:49:39Hey, Solly. Hey, soldier.
0:49:40 > 0:49:43Hey, baby, you made it.
0:49:43 > 0:49:46You made it, sweetheart, you made it.
0:49:46 > 0:49:47You're going to be fine.
0:49:56 > 0:49:58After three days,
0:49:58 > 0:50:01attempts to take Sol off the ECMO machine have failed.
0:50:06 > 0:50:14So, since we last spoke yesterday we had a look at Sol's heart in detail again,
0:50:14 > 0:50:20and what we need to try and do is seize a window where the heart
0:50:20 > 0:50:23appears to be working well, where he's free of infection,
0:50:23 > 0:50:27where the lungs are as good as possible, and go from there.
0:50:27 > 0:50:30Now, having tried today and not been able to get him
0:50:30 > 0:50:32off the ECMO machine, I think we're going to wait
0:50:32 > 0:50:36for a minimum of 48 hours before we would try again.
0:50:36 > 0:50:38The average time that children would spend on
0:50:38 > 0:50:42an ECMO machine is somewhere between seven and ten days.
0:50:42 > 0:50:45When we're getting beyond 10-14 days,
0:50:45 > 0:50:50I think that we're less likely to see recovery of heart function.
0:50:52 > 0:50:56Up to that point we would anticipate that the heart will take that
0:50:56 > 0:51:00sort of time to recover from a big insult and to recover
0:51:00 > 0:51:03and to be strong enough to work on it's own.
0:51:05 > 0:51:07We've been here before.
0:51:07 > 0:51:12We know that children with this scenario CAN come off the ECMO machine.
0:51:12 > 0:51:15And that their hearts will work,
0:51:15 > 0:51:18so we just need to hang in there
0:51:18 > 0:51:20for a little bit longer for the time being.
0:51:23 > 0:51:26We are right up against what's possible.
0:51:26 > 0:51:27We've pushed the boundaries to try
0:51:27 > 0:51:31and do the heart transplant in the first place. We know that.
0:51:31 > 0:51:34And there's no question that Sol has lurched
0:51:34 > 0:51:38from crisis to crisis and it has been a question of crisis management.
0:51:38 > 0:51:41That's why we're here.
0:51:41 > 0:51:44We hope that we're going to win in the end
0:51:44 > 0:51:48and we still have confidence that we will do, but it's difficult
0:51:48 > 0:51:52and it's going to be even more difficult for the parents.
0:52:07 > 0:52:11It's very difficult to know, even with the benefit of hindsight,
0:52:11 > 0:52:15if we've made the right decisions for Sol.
0:52:15 > 0:52:18And clearly if he's out of hospital in three or four month's time
0:52:18 > 0:52:20then it 's been worthwhile.
0:52:20 > 0:52:25If sadly, despite all the efforts that have been done,
0:52:25 > 0:52:28he...doesn't get through this,
0:52:28 > 0:52:34or his quality of life is really very poor afterwards,
0:52:34 > 0:52:39then our decisions for him and his family weren't correct.
0:52:39 > 0:52:41They were done in good faith.
0:52:43 > 0:52:48Sol's case represents pushing the boundaries of cardiac transplantation
0:52:48 > 0:52:52and Great Ormond Street Hospital and the cardiac unit
0:52:52 > 0:52:55have always pushed the boundaries as far as is possible
0:52:55 > 0:52:57and we should be proud of being able to do that.
0:52:59 > 0:53:05As a consequence, we learn what is possible and what's not possible.
0:53:08 > 0:53:13Three weeks after his transplant, Sol is still on intensive care.
0:53:14 > 0:53:20He came off ECMO, but has not been problem-free since then.
0:53:20 > 0:53:23His heart has worked reasonable well, but his lungs have struggled.
0:53:23 > 0:53:26He's still ventilated.
0:53:26 > 0:53:31His kidneys took a severe hit, or suffered a severe insult,
0:53:31 > 0:53:34and it may be that there will be some long-standing kidney damage
0:53:34 > 0:53:35as a result of that.
0:53:35 > 0:53:39It has been a massively traumatic event for his body.
0:53:42 > 0:53:45Are you hot? Or are you cold?
0:53:47 > 0:53:50Yet, we still feel that there is hope that he will have
0:53:50 > 0:53:54enough of a quality of life to justify all of the suffering that he,
0:53:54 > 0:53:58primarily, and his family have had to go through to get this far.
0:54:10 > 0:54:12Ellie has left Ladybird Ward
0:54:12 > 0:54:16and moved into the hospital accommodation with her parents.
0:54:16 > 0:54:2114 days after the transplant, she is going home.
0:54:21 > 0:54:24We're talking about 12 medicines,
0:54:24 > 0:54:26some of them given three times a day,
0:54:26 > 0:54:30so there are three periods of drug-giving.
0:54:30 > 0:54:33This is a small one, this is just three different medicines.
0:54:34 > 0:54:37Part of our life, this is, syringes.
0:54:43 > 0:54:46We are told that Ellie will not remember most of this.
0:54:48 > 0:54:52Erm, but I guess at some stage we have to explain to her
0:54:52 > 0:54:53in some detail how she got the scar
0:54:53 > 0:54:57and how she is a little bit different to most other children.
0:54:58 > 0:55:00Are you going?!
0:55:06 > 0:55:08Ellie is going home today.
0:55:09 > 0:55:10Ellie!
0:55:10 > 0:55:12Those left on Ladybird, however,
0:55:12 > 0:55:14will be one step closer to getting a heart of their own.
0:55:14 > 0:55:17It's quite emotional, actually, to be honest.
0:55:18 > 0:55:20Ellie!
0:55:23 > 0:55:25Is she your friend?
0:55:25 > 0:55:27Where is she going?
0:55:30 > 0:55:32- Best of luck.- And to you.
0:55:32 > 0:55:34I'm absolutely delighted for you, I really am.
0:55:34 > 0:55:37'Obviously there's the uncertainty of the length of her life
0:55:37 > 0:55:41'and how well the transplant will take, all those sort of things.'
0:55:41 > 0:55:46And it's this issue of, you know, every parent wants their child
0:55:46 > 0:55:51to be perfect, and Ellie's been through an awful lot of things
0:55:51 > 0:55:54that you wouldn't want to inflict on...
0:55:56 > 0:55:58..well, anybody at all.
0:55:58 > 0:56:04And its our daughter we've had to allow to go through
0:56:04 > 0:56:10'this whole process, and I guess we're now redefining
0:56:10 > 0:56:14'what we understand by perfect, cos she is still perfect,
0:56:14 > 0:56:19'but that concept of perfect is just a little bit different,'
0:56:19 > 0:56:23so you sort of live for the moment with an eye on the future, I guess.
0:56:23 > 0:56:25That's what we have to do.
0:56:32 > 0:56:34- We'll be in touch.- Yeah. Talk to you soon.
0:56:36 > 0:56:39- Thank you! - You'll be back on Wednesday!
0:56:39 > 0:56:40Yeah!
0:56:40 > 0:56:43'We always have to warn families that it doesn't last forever.
0:56:43 > 0:56:48'Your average life expectancy after a transplant is around 15 years.'
0:56:48 > 0:56:52We have had patients whose new hearts have lasted up to 30 years,
0:56:52 > 0:56:55which is excellent, but in essence, you're not offering a cure.
0:56:55 > 0:56:57This isn't going to solve all of their problems,
0:56:57 > 0:57:02so while it's an excellent thing to do, it also has its drawbacks.
0:57:05 > 0:57:07The long-term outlook is now
0:57:07 > 0:57:12so much better than it was even five or ten years ago.
0:57:12 > 0:57:16Much, much better. It's not perfect. It's improving all the time.
0:57:17 > 0:57:22We know that the treatment with transplant produces a good quality of life,
0:57:22 > 0:57:24IF you can get the donation.
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