A Chance at Life Great Ormond Street

The general surgery unit at Great Ormond Street

performs operations that many other hospitals are unable to do.

I tell you, it's nailed down.

Wow.

This is one operation you wouldn't want to lose control of.

This is a very dangerous thing to do for a living.

It's not dangerous for me,

but it's extraordinarily dangerous for the people that we try and help.

He's going to bleed. I think we need to get the hell out of here.

Would you like to take some deep breaths for me?

I want to be happy with him running around, playing - normal life,

just to live normally.

When you're one of the best in the world,

everyone wants you to say yes.

I'm very happy to try and take this out, but I, I just don't know,

I can't do what's impossible for me. I can only do what I can.

But saying yes means you must also live with the consequences.

Part of the mind-set is that you're going to make people worse,

in order to make them better.

Not all bad results are because of the surgeon,

but, nonetheless, if you do it, you are responsible.

Edward Kiely is one of Great Ormond Street's most experienced surgeons.

He's carried out over 15,000 operations.

He is a world specialist in removing paediatric tumours.

Many of his patients are referred to him

as they are considered to be inoperable.

Nine-year-old Eliana has a massive tumour in her stomach.

Although it's not cancerous, she's had 15 months of chemotherapy

to try and shrink it as it was considered to be inoperable.

But the chemo has been unsuccessful

and the tumour has continued to grow.

Surgery is now her only chance of survival.

Hello there. I'm sorry to be so late,

but I had a couple of lectures to give in Oxford,

and I came charging back.

I drove back at 100 miles an hour, just to see you.

'The only treatment for it is to remove it.'

Otherwise, it will keep on growing,

and, uh...

..will eventually kill her.

I think probably she's lost a bit of weight, yeah.

OK, have a seat.

It's a big lump and you know that it displaces the wee blood vessels in her tummy,

and is attached to them and all that.

I've explained that to you in the past.

So we need to separate off the vital structures and take the lump out.

It's normally possible to do that.

Normally we can take these lumps out.

Even at the size that it is?

The size actually is not relevant at all.

It's more what it's attached to, and in what way it's attached.

Now...

..these things are always dangerous, yeah?

And just trying to do it, in itself, is dangerous, yeah?

There's no way of not entering into danger, I'm afraid.

That's just the way it is.

But, normally, the operation is successful,

we can take the thing out and have done with it.

Any organs in particular in danger, or you just don't know?

-I think the left kidney is the one mainly at risk.

-Right.

Has she been on morphine a lot or not?

Um, I would say about the last four weeks.

Right.

When she lies down, that is when the pain comes more, in the evening.

-She gets a lot of pain.

-Where does she get pain?

-Just, like, her whole... Where the tumour is.

-Right.

Yeah, bit unusual.

-To have the pain?

-Yeah.

-She...has got a fear of dying.

-Yeah.

I think maybe that could be tied up with the pain as well.

-Right. It's just a bit odd.

-OK.

She'll be better off without it, really.

-OK, thank you.

-No problem.

-Thank you so much. Good luck.

-Thank you. OK, I'll see you tomorrow.

-Thank you, yeah.

-Bye.

You're doing what you said you ought to do,

you're doing what you said should happen, and if it goes badly wrong,

and occasionally things do go badly wrong,

you bear the responsibility for giving the advice

and for doing the operation.

Scissors now.

Ha-ha!

There's the kidney and there's the spleen.

The huge tumour has grown into her liver and kidneys.

The challenge is to remove all of it without damaging them.

I tell you, it's nailed down.

Wow.

How the hell am I going to get this thing?

This is one operation you wouldn't want to lose control of.

Holy God!

'It's a thing called a fibromatosis. It's a benign tumour.

'In other words, it doesn't spread round the body,

'but it grows relentlessly.'

Knife now.

'If you don't take the whole thing out,

'it grows again, so the whole thing needs to come out.'

Suction.

Spot of bleeding.

I need a stitch in a second.

Scissors.

Do you see an easy way of doing this?

-No.

-No, neither do I, unfortunately.

Well, I make them look difficult. That's for sure.

That's it, that's the urethra there, that thing down there,

so I'll just go down the medial to it there.

Because of its size, the tumour must be delicately freed,

piece by piece, from her vital organs.

We'll try and get the kidney off it up here.

-Do you think that's through there?

-I think it is.

There's no point in preserving a kidney that's got a tumour in it.

It's not very heavy, actually.

Mind you, most of it is still in there.

I think there's nothing happening, is there? No, then it's OK.

OK, Martine, we'll take a break.

After five hours of operating, the surgical team take a break.

All these operations terrify me.

They're very frightening, aren't they? Yeah.

They get frightened, too.

They're thinking, "What's he going to do now?"

Right.

Time to rock and roll.

OK, there's another little bit.

Hasn't made a huge difference, has it?

The biggest piece of the tumour is still attached.

-It is amazing.

-It's just attached in one place.

Absolutely. OK, so we'll take this thing first.

That's nice, to have it out, isn't it?

Can we weigh it, please?

Weigh the whole lot, please, if you can.

Have you got a bucket for it?

OK. So, now, is there anything left?

OK, put it all in the one thing.

Well, that is, that's...

Oh, that's lung. That's lung. Right.

-What's the max on the scale?

-The max is one pound.

Eliana's tumour weighs three kilograms.

OK, all fine, all done, all out.

-Oh, my gosh! The whole thing?

-Yeah.

-Oh, that's amazing. And how is she?

-She's fine.

-Yeah?

-She's fine.

She's down and she'll be ready to come back, I'd say, in about an hour.

They'll just let her wake up quietly and slowly, but she's fine.

-No problems?

-No problems.

Oh, my gosh! I'd like to hug you, I'm sorry! Thank you so much.

-Thank you so much.

-Thank you so much.

-You're welcome.

I knew you could do it!

Amazing! Thank you so much, I can't even tell you how I feel.

That's OK. OK, so far as we know, it's all out,

everything I've taken out, everything I could see.

Her kidneys are OK, her spleen's OK,

and everything inside is OK. Nothing else needed to come out.

-And all the veins and the arteries?

-All fine. All fine.

Oh, my God!

There you go.

Thank you so much. So, can we go down now or...?

They'll call you down in a little while and then they'll bring her back up here.

-OK.

-Thanks a lot.

-OK, no problem. There you go. Bye.

She's done well

and I hope that that's the end of the problem for her.

It'll be very nice if it is, you know.

End of story,

tumour gone, cured,

and just get on with her life. That'd be nice.

Unbelievable.

Although it's called the General Surgery Unit,

it is a specialised department.

Each year, they perform surgery on over 1,500 children.

Many of the operations are unique to Great Ormond Street.

For the past year, 17-year-old Sebastian, originally from Colombia,

has been living in Great Ormond Street, being prepared for surgery.

He was born with a condition called oesophageal atresia,

which is a condition where the oesophagus, or swallowing tube,

has not formed completely.

When he eats and drinks, there is spill-over into his windpipe,

and into his lungs, of the content that he eats,

and that's had a long-term damaging effect on his lungs as well.

Hello, Sebastian. How are you?

Sebastian must be fed intravenously every day.

-Playing guitar.

-Playing guitar? No way!

When he was a child, surgeons in Colombia tried to

create an artificial oesophagus.

Some eight to ten operations later,

and having been in hospital for the first 18 months of his life,

was left without an oesophagus, and the doctors there had used

part of the colon, or large bowel,

to bridge the gap between his throat and his stomach.

When I first met him and his family,

I'd said that I felt the surgery was possible to do.

It was going to be very high-risk surgery

but, at the end of the day, if he didn't have some procedure now,

then the deterioration in his lung function was going to kill him.

He's wanted the operation since the day he got here.

He was just like, "Fix me. Do whatever you need to. Fix me."

Initially, it was very difficult for him to get to know all of the staff

and to trust everybody because he'd been sort of really unwell

when he first came into hospital and it was very frightening,

he spoke no English, so I think it's been really difficult for him.

He's now learnt more English

and he's got a good relationship with the staff.

-Can I help you?

-Yeah, you can come and help me.

-OK. In what?

-In the office.

At 17, Sebastian must legally consent to his surgery.

It's an enormous decision for him to make.

You're talking about making decisions that might materially

affect his life, and about his survival.

He is making some important decisions for himself

and he's demonstrated that he has good understanding about it.

OK, so, I'm going to start

and say that I'm going to go through all of the questions he's given me.

MAN TRANSLATES INTO SPANISH

OK. Now, in doing this operation,

we've had to deal with some difficult decisions

and understand exactly what an operation of this importance means.

If we were to go back to a situation of Sebastian being out of hospital,

trying to eat and drink again, it would put him at significant risk

of developing a serious infection of his chest, losing weight and I think

that would be a very big threat to his life in the very short term.

MAN TRANSLATES FOR MR CURRY

Oh, right. OK.

If I didn't think that the operation had a chance of success,

I wouldn't be putting Sebastian through it.

So, "How many hours does the operation take?"

is question number one.

It's going to take probably anywhere from eight to 12 hours.

And we will want Sebastian to go and be looked after in the

intensive care unit, for anywhere from five to ten days after the operation.

"How long after the operation will I have to wait to eat?"

I don't think it will be in the first two weeks.

HE SPEAKS SPANISH

Do I have to carry more weight or this is enough, what I have now?

Let's put it this way,

if he was to maintain his weight as it is, that would be just fine for me,

but if he can put some more on, that would be even better.

OK. Anything else? OK.

Good.

His main anxiety seems to be around going to intensive care afterwards.

It doesn't seem to be the surgery.

It doesn't particularly seem to be how he'll be after the surgery, either.

It's mostly around what will his scars look like and what will intensive care be like.

It's OK. It's OK.

Don't be scared.

What's wrong?

So you will go to sleep, then you will be here for some time,

then you wake up, but for you it will feel like two minutes.

-You won't remember any of what has gone on.

-OK.

Listen, don't be scared, OK,

because it's always more scary to imagine

than to see.

WOMAN TRANSLATES INTO SPANISH

-OK?

-OK.

Come on.

NATHAN LAUGHS

All right. We will walk round, Sebastian,

and you can look if you want to look,

but you can come back as many times as you feel you need to.

-Organise the colours.

-Organise the colours?

-I don't like the colours.

-You don't like the colour?

I can't really decorate the walls for you, sorry.

While Sebastian's operation is planned,

the general surgeons are on call for emergency referrals from around the country.

It's 2am and a newborn baby has been transferred to Great Ormond Street.

Doctors suspect his bowels have perforated

and are leaking into his abdomen, endangering his life.

Mr Kiely is the surgeon on call.

Mr Kiely, Barney here. Just to let you know that

the antenatal perforation baby has arrived on ICU.

So he was born at about 1.30 yesterday morning,

born in a very poor condition,

and he didn't have his first heartbeat till about 17 minutes,

requiring cardiac massage.

And, also, on his brain scan,

they have done a CFAM with a fluid bolus.

There's an abdominal X-ray...

The extent of the baby's brain damage is still unknown,

but the surgeons must deal with the immediate problem of his stomach.

Tummy mildly distended, stretchy and shiny.

OK. See you then. Bye.

This baby has undoubtedly got a problem in his tummy,

and I think there is no way of avoiding an operation.

So we could do it tonight or we could do it tomorrow or

we could do more investigations,

but I can't see any way that we can avoid doing an operation on him.

OK, I need a non-toothed, please, and a knife.

And so, I'll be just concerned that by not operating he would get worse.

How are you doing?

Fine, thank you,

This must be the gas-filled thing in the middle.

In other words...

Ventilation is pretty good.

But I don't see where the blind end of it is.

Mr Kiely discovers that the baby's bowel has twisted,

causing a blockage that must be removed.

There is an awful lot of bowel proximal to us.

There you go, histology.

Can I have a culture swab, please?

But the other end is stuck down and it's going to be...

It's going to bleed and, given the renal failure and all the rest of it,

I think we need to get the hell out of here.

OK, thanks very much.

The baby is taken to intensive care to recover.

Only now can the doctors turn their attention to the issue of his brain damage.

When he initially had a CFAM test to just check the cerebral function

at his local hospital, initially it showed severe injury,

and we know from previous studies that when we say

there is severe injury, then there is some kind of irreversible damage.

What that means in terms of long-term prognosis

is something we have to wait and see.

There's no way that I can make predictions as to what might be

the case in five or ten or 15 years' time.

I worry about what it might be like,

but there's no way anybody can tell me.

I don't know and nobody else can tell me.

It's not for you to say

this family should not be allowed to have this burden,

if there's going to be a burden.

But, at the end of the day, nobody can tell me

what's going to happen to this baby, so I treat it like any other baby.

The following day, there's been no progress in his overall condition.

-Hi.

-Hi.

What's happening?

Current trend is down, his potassium is less than five,

he's still hypernatraemic, but you guys are managing that.

He's been anuric since birth?

And he's now coming up to three days of age and...

He needs to do something soon, otherwise he has no chance.

A few days later, the baby has improved slightly,

but his condition is still critical.

To see him from not moving at all to now making movements

and looking more what as you would call a normal baby,

who would be at home, would be looking like

and actions that they're doing, it's...

Mum is very, very happy.

And, hopefully, this afternoon Mum should get her first cuddle.

Yeah. I know! That's the bit we all look forward to.

We're all very excited about that.

Mum doesn't know yet.

She knows we're hoping to take the tube out,

but that's all she knows at the moment.

In paediatric surgery, there's an awful lot of ethical things to consider,

especially with a child who's got multiple abnormalities,

or a child whose long-term outcome is going to be quite compromised.

No matter how good your treatment,

the child's potential is strictly limited.

You have a child who's alive and well,

and some people would say, "Well, that's fine for you,

"but you've given the parents a child who needs constant attention forever."

Whereas if you hadn't intervened, the child might have died

and they would have had a better life.

But in the end, I suppose for us the child is the patient,

and it's not that you ignore it, or that it's not important,

but you can't go worrying about the lifestyle of the relatives 15 years down the line.

I mean, that's not your business.

The general surgeons meet regularly to assess difficult cases.

Today they are discussing the successful removal

of Eliana's tumour with the oncologists.

And Mr Kiely, quite amazingly,

has operated and got this out,

so how did you do that, Ed?

Compared to the average neuroblastoma, it wasn't...

-It was a cinch?

-It wasn't in the same league.

I mean, it was a bit sticky, but they're not as infiltrative.

This would be considered by most people simply to be inoperable.

So did you find the blood vessels going round the back of it?

MR KIELY CLEARS HIS THROAT

Yes. But, honestly, almost anybody could have done this, seriously.

-Really?

-Yeah, absolutely.

-Seriously?

-Yeah.

I mean, we didn't know that when we started but...

But could we have done better resolution imaging for you to predict that?

No. Honestly, no.

-So you think you have to go and look?

-I'm afraid so, yeah.

Anyway, I'm thrilled with the outcome, thank you very much.

It's Eliana's last day in hospital.

You look quite different to me.

I see the bags are packed,

-so your mummy's going home anyway, is that right?

-Holiday's over!

-And you're going to stay, is that right?

-No, I'm going.

No? You're going as well. Excellent.

OK, home you go. Fantastic.

Fantastic. OK, looks fine.

Thank you. Thank you so much.

OK, no problem. No problem. It was nice to help.

Do you want to say anything to Mr Kiely?

-Thank you.

-That's OK. See how you go.

-Thanks a lot.

-OK, bye now.

-Bye.

-Thank you, Barney.

-Bye.

Say goodbye to your room.

-MR CURRY:

-I like children's surgery because of the fact that

if you do something and you get it right,

you give somebody 70 or 80 years of a normal life...

..and that children generally are designed to get better,

and that really is the biggest help for us as children's surgeons.

Ah, so, Elli, what are we going to do when we get home?

INAUDIBLE

After a year of intravenous feeding,

Sebastian has put on enough weight for his operation.

Mr Curry has come to have a final discussion with him,

before he formally consents to the surgery.

So, now a couple of days away from the planned operation on Friday.

WOMAN TRANSLATES INTO SPANISH

And it's something we've talked a lot about,

in terms of the surgery that we need to do.

But now we get to the stage where I need to go through that again,

because I'm going to be looking for permission to go ahead with

the operation from Sebastian, with assistance from his mum.

And I want to start that process today.

This is just some drawings that I've made.

First of all, this one shows the three openings, one in the tummy,

one in the chest, and one in the neck.

Mr Curry explains that he's going to pull Sebastian's stomach

up into his chest, and connect it to his throat so he can eat again.

And this part of the stomach will then be brought up

and joined to here, so it looks like this.

So, we now need to talk about what are the risks of the operation.

And the operation is one that has significant risk,

in terms of his life.

And I've estimated that risk to be at around 10%.

And that really means a one in ten chance

of not surviving after the surgery.

The illness that he has and the treatment that it needs creates,

I think, a much bigger risk to his life, than the 10% from the surgery.

So, although this is an operation that has significant risk,

I think it's the best long-term answer to making sure that

Sebastian stays healthy and well for the rest of his life.

OK.

INTERPRETER: One question.

Please tell me you haven't operated on nine people this week.

LAUGHTER

He's absolutely right. I haven't operated on nine people this week.

You do have to understand what it means for a family,

because if you are somebody who can be completely detached,

you'll never really understand

what it is for a family to have a child who's either

having a hernia operation...

What could be simpler?

It's just a hernia operation. It's a day case. I do 100 a year.

Why are you so upset?

It's a huge thing. It's a huge thing for your child to have an operation.

My son's had two operations here and, you know, I've, I've kissed him

on the forehead when he's gone under anaesthetic...

and my God, I tell you, it's really hard.

He was only having his toenails taken out, for crying out loud!

And I think understanding a little bit about the family,

what they're going through, helps you.

OK, I'll see you tomorrow.

Just to wish you all the best of luck tomorrow

and everything is going to be fine, we are certain...

-Yes.

-..that it's going to...

-Me too.

It's an end to a long journey. Well, actually it's not the end.

-It's the middle of a long journey, let's put it that way.

-Yeah.

-OK.

-Thank you so much. See you tomorrow.

-See you later.

Aarin is five and is being treated for a rare form of cancer.

He has a tumour in his abdomen, a neuroblastoma,

which must be removed to give him every chance of surviving.

The surgeons tried to remove it last year,

and they couldn't take it out

because it was too attached to some of the key vessels.

Come on! After you, sir.

And, yeah, so that was a huge setback for us

because, just before that, he was clear of all his secondary cancer,

and the tumour was the only thing that needed to be taken out.

So where shall I listen for your heart, then?

-Shall I listen to it there?

-Is that the heart?

-Hmm, I'm not sure.

-I don't think so.

Aarin has been receiving a radical new antibody therapy in Germany,

in the hope that the tumour will become operable.

And again.

AARIN BREATHES DEEPLY

Now the hope is that the tumour has become smaller

because of all of that and is more...

If it's not become smaller, at least it's become more easier to remove.

Just push against your tummy, that's it. Good boy.

And so we are hoping now that the surgeons will come

and say, "Yes, we can remove it."

Give me your hand.

That's it.

Mr Kiely attempted to remove the tumour last year, but he failed.

Last year was horrible, it was absolutely horrible,

and made no progress at all.

He needs to look at the scans to see if there's any change.

OK, so here you are, and there it is.

Yeah, that's probably in the same size,

just judging from where the heart is.

The scan shows there has been little change in Aarin's tumour.

But you have to say most of the disease is at the top of this.

It may be a bit more unpleasant down here.

But if this is inferior to the diaphragm,

and it is then by definition separated from the aorta,

-then that ought to come away.

-Mm-hm.

I wouldn't know whether that's the tumour or not. It might be.

Mr Kiely cannot tell from the scans if he can successfully remove the tumour.

The only option is to operate again.

Do you see any changes on the tumour?

To me it looks a little bit smaller...

..but it's not the size of the tumour that decides whether you can take it out.

It's how it is attached to the blood vessels.

That's what decides in the end whether this is possible or not.

OK.

And you can't tell that from the scan.

I'm very happy to try and take this out,

but I-I just don't know.

OK?

And if we do not...

-If we are not successful in removing the tumour...

-Yes?

What are the repercussions then,

I mean, with regards to his, you know, eventual remission?

Because that's the only thing that's remaining at the moment.

Absolutely. The simple answer is that if we can take the tumour out,

we believe that it gives him

an increased chance of coming through this,

but it's not a huge difference, yeah?

It's an improved chance,

but it doesn't mean, if we fail again, that he has no chance.

It's not like that.

And the number who survive after successful surgery

is just a little bit greater than the number who survive after no surgery,

or failed surgery.

But you're dealing with small margins

and you're trying to give him every possible chance.

But it's not an either or, yeah?

So it's an extra chance of surviving,

but it doesn't mean he has no chance or a much, much lesser chance.

-It's not like that.

-OK.

OK. I'll do my best for him,

but I can't...

I can't do what's impossible for me. I can only do what I can.

I appreciate that.

And it's very similar to the last time.

'General surgeons will always want to try,

'rather than to give up without trying.'

So, it's very difficult not to try.

Very difficult, yeah.

Yeah, we can go now.

-Slowly, slowly!

-OK?

-Thank you very much.

-OK, I'll see you tomorrow. OK, bye.

So, here in surgery will - I have no doubt - have me at the absolute limit of my ability.

That's what I expect.

And that's where I was when I operated on him last year,

and I couldn't do it.

Only an idiot wouldn't be frightened by that.

Can I put my little light on your finger?

Ah, you've had this done before, haven't you?

Which finger would you like?

That one?

I suppose some days you might feel more courageous than other days, I don't know.

A very good surgeon I once worked for, who was an orthopaedic surgeon,

he said he would never have somebody operate on his back who wasn't frightened.

I thought that was a very interesting statement.

And a lot of the good surgeons I worked for got very wound up.

I'm not sure they would admit to you they were frightened,

but they certainly looked like they were very frightened,

and they were very good surgeons.

And you go to sleep, OK?

Night milk and go to sleep.

That's right. OK, you can give him a little kiss.

We'll look after him and we'll see you when it's good, OK?

See you a bit later on.

-Thanks, Dad.

-See you later on.

MR KIELY: Give me a knife, long handle.

Aarin's tumour is embedded around his major blood vessels,

and Mr Kiely must cut between them with absolute precision,

leaving nothing behind.

OK. So there we are.

And there we are, part of it anyway.

That is undoubtedly tumour, because it's all calcified and peculiar.

The tumours are wrapped around the blood vessels

and so, to take the tumour out, you've got to free them.

You've got to cut them, so you cut with the knife between the tumour and blood vessel,

and there is no space there, and it's not an easy thing to do.

But sometimes you can't. You simply can't physically do it.

About one in ten of the patients I operate on,

I can't take anything out.

Is that tumour up there?

There's tumour there, but...

Tricky here.

That's a big artery.

Shall we just plod away?

I mean, we're moving so far but there's a lot to do.

All he knows is doctors, nurses, hospital visits - nothing normal.

He doesn't have friends.

Doesn't have anything.

Let's re-evaluate.

It's very difficult and it's not getting any easier.

-Very difficult.

-Is it?

-Mm.

We're waiting for the day when he will go to school,

he will have play dates.

Yeah, that's what I'm looking forward to.

I'm not enjoying this very much.

There it is.

After six hours, the first tiny piece of tumour is removed.

That's not bad.

OK.

Jeepers creepers! What the hell was that?

Suction, please.

It takes Mr Kiely ten hours to remove all of the tumour.

That's it.

What shall we call that specimen?

-Er, tissue from hepatic artery.

-Tissue from hepatic artery.

Just to mark the unpleasantness of it all.

Now that the tumour has been removed,

statistically, Aarin's chances of survival have improved.

It isn't fantastic, you know, adrenaline rush. It's none of that.

Well, for me anyway, it's none of that.

Just... We've done what we set out to do,

and it worked and that's good.

And you don't have to go and tell the parents we failed,

which is an awful business.

Hello. All fine. All fine.

We've taken it out and he's fine.

Everything?

All we could see.

OK.

It'll be a little while before he's ready to come back,

but he's fine and he was fine throughout.

OK.

-ALL:

-Thank you very much.

It's the day of Sebastian's surgery.

Mr Curry will attempt to move his stomach up into his chest

and attach it to his throat.

This is a street above anything else probably that I'll do this year,

in terms of the length of the procedure,

the complexity of the procedure and the danger of the procedure.

I'm scared.

-Why do you look scared?

-It's not my evening.

-How are you doing?

-All right.

-Got some funky shoes on there.

-MR CURRY:

-There's been lots of challenges,

not only from a language barrier, but from an age barrier,

but, you know, he's responded to it very well.

He's been upbeat throughout.

There have been many difficulties along the way,

but you just have to speak to the nurses on the ward who say now

how quiet it's going to be,

and how they're going to miss him over the weekend.

He's become part of the furniture up here.

It's going to be sad to miss him up here for a little bit.

Everybody's looking forward to getting him back.

This is one of the department's most challenging operations this year,

and Mr Kiely will be assisting Mr Curry.

Instead of having ten years of my experience and 25 years of

Mr Kiely's experience, you've got 35 years of experience.

And I just think that the more poundage of years of experience

stood around the table, the better it is for any individual child.

Right, we're done.

OK, so do that stuff that's on the front there,

because I think that's just a lesion underneath the liver.

I'm just wondering whether, because it's still attached,

-whether it provides...

-It's an easy way to pull it down?

-Yeah.

Right. It probably is.

This hiatus, this thing here...

-I think you could probably...

-It is, isn't it?

-Yes. Yeah, I think so.

-Let's just do the edge of the hiatus there.

Scissors, please.

So, colon's out and the stomach's ready to bring up into the chest,

so we're just waiting for a tube that we can pass down through the tunnel where the colon was,

attach it to the top of the stomach,

and then bring that up to the neck

to join it to the remainder of the oesophagus in the neck.

Well, that moved. It moved.

It's as tight as a drum up here.

And down there?

Tightish.

I'll put a couple of stays, one on either side,

double-hitched stays and see if we can hold it here.

After 12 hours,

Sebastian's stomach has been successfully attached to his throat.

He will now be kept in a medically induced coma

to allow his body to recover.

The operation went well.

And Sebastian is well.

Bringing the stomach up was difficult

and the new join is quite tight,

but we were happy with it when we'd finished.

OK, thank you very much.

Thank you, thank you very much.

It went well, we were happy.

This is good news for me. Thank you very much.

So he now stays in intensive care, for probably a week to ten days.

For the first five days,

he'll be fully asleep and paralysed with the drugs.

OK.

-OK, thank you very much.

-Thank you very much.

While Sebastian's surgery was successful,

two days later, he has developed a massive infection.

Scans show it has spread to his brain.

He's going to have a CT scan of his chest and abdomen this morning.

When did it pop?

About 11 o'clock last night.

He remains pyrexial.

So, I think we'll just try some things with...

I mean, I haven't seen either of them but Mary, who was on overnight,

said his neck, particularly, is horrendous.

It would be nice to...

We'll probably want to see those at some stage later on today.

And the CT - head, as opposed to the MRI?

CT, chest and abdomen today.

-He had an MRI yesterday of his head...

-Right.

..and they're querying that he might have left-side empyema

in his chest, which is basically the reason for the CT.

I think the general problems with the infection in the neck and the abdomen

would be predictable things following this kind of surgery,

but I think that the problem,

potentially, in his head with infection

is much more catastrophic,

in terms of what it's going to do to his brain and his,

you know, him as a person.

Just don't have that information yet so...

But it's obviously a very, very worrying time at this stage.

We've, we've all known him as the person he is

and, er, we just hope and pray

that he'll still be that person...at the end of it,

So, we just don't know.

Yeah, we just have to wait and see.

Sebastian's condition has worsened.

The infection has exposed the carotid artery in his neck

and if it ruptures, he will not survive.

There's a process going on inside Sebastian

and we just don't understand it.

And not understanding that process sometimes means you just don't know

what the best thing to do is to control it,

to, to make him turn the corner, to start to see a healing process.

At the moment, we're just in a...

It feels like a spiral of downward deterioration and everything's going wrong.

Um, and everything that we've done so far hasn't made a difference to that process.

And our concern is how far down the spiral can we go before he succumbs.

And unless we start to see some improvement,

some turning of the corner, some change in his body,

over the next two or three days,

I don't think that he could get much sicker without dying.

An urgent meeting is called to discuss how they can treat

the infection in Sebastian's neck.

So I think the main reason

for discussing him here is to get people's views

about what investigation should be done next,

what treatment should be offered.

When the sedation was reduced and muscle relaxants stopped,

he was noted to be not very responsive,

and an MRI scan of his head showed diffuse changes in the brain

which was described as haemorrhagic encephalitis,

thought to be possibly related to infection in the wound,

so he's being treated with

broad spectrum antibacterials, antivirals and antifungals.

I guess the question we had about dressings to the wound is that

he's got quite a lot of liquefication of pus

and debris in the wound, and we had wondered,

from a general surgical perspective,

whether a sugar-type dressing would be appropriate

to act both as an anti-bacteria sidal agent,

and also as an absorptive agent,

which wouldn't require physical packing

and a sort of manipulation of the tissues in an ongoing way.

Just put sugar in the bloody wound.

It works, it does the job,

it's sterile and it's the fastest way of cleaning the thing.

And you're not manipulating...

You're not manipulating, you're not pushing the carotid around.

It's easy to do - you just keep filling it up,

wash it out once a day, and then fill it up again.

-It's the only thing that'll work. You'd agree?

-Yes.

-Yeah.

OK. So, sugar dressings for the next few days, week,

and then, if the infection's under control, possibly...

Well, the median time to clean an open sternotomy,

and they know much more about it than I do,

is about six days - filthy open sternotomies.

They're sterile in about six days, and that's what you're looking at.

And you hope his carotid will be OK.

If his carotid goes, nobody will save him.

So we will re-look again once...

-MAN:

-Maybe re-discuss next week?

Yeah, whenever.

-OK, good.

-Thank you very much.

Having exhausted all antibiotic treatments,

they are now trying sugar.

Right, so how is he today?

He's OK, just apart from this belly pain, he has pain here.

It started last evening.

OK. Has he had any breakfast?

Just some milk.

He's been taking some pureed food, which would seem to be OK.

It's just the gastric fluids...

Look, Mummy, it's a pattern.

It goes turtle, turtle, car.

Turtle, turtle, turtle, car.

There you go.

OK.

-NURSE:

-The mum asked for it to be stopped this morning

cos he was in a bit of pain.

Right. Well, can we try him with some breakfast

and see how he gets on with eating solids?

OK. Great.

-MOTHER:

-OK. Thank you, doctor.

And are we going to go home today?

AARIN: Yeah.

-Let's pack up our bags.

-Have you packed all your bags?

Yeah.

Have you?

And look, we got Mummy bag.

Successful operation for an advanced disease like his,

the benefits are fairly small.

But if it's your child, you'd take anything.

If you give them a few extra per cent chance of surviving,

wouldn't you give it a go? Yeah.

I've thought 100,000 times about whether what we did was right,

and whether, even knowing what the outcome was,

whether I'd do it again, and the answer is yes, I would.

Because it was, it was the right thing to do.

It was a chance at life that he...

He didn't really have another option,

in terms of what we are able to offer here.

I thought that all of the planning and everything else that we put into it would be enough.

But I think nature is a wonderful thing,

but nature will sometimes come back and just show you who's boss.

In the nine years that I've been here as consultant,

I haven't had a relationship with a boy and a family like this,

to spend a year in hospital getting to know them, and it's...

You know, I don't have any surgical pride in me about, you know, the challenge of the operation.

It's just about the boy, the human, the family and, you know, that's...

I kind of miss him, really.

You'll have to stop cos I'm going to blub.

If you're doing big operations,

on children who are more complicated than normal,

this sort of thing happens more often.

I mean, you don't become immune to the thing.

But in some way, um...

..you have to carry on.

There will always need to be an institution like this,

um, that will take on those operations for those children,

knowing that they're high risk, but knowing that, that, you know,

if you have everything that this hospital can give, that,

if you do that and you do it well,

you will get good results for children.

But you won't get it for every child,

and there is the dilemma - that you have to...

You, you can't just pack up and give up if, if one child doesn't survive,

because it's not fair on all those other children in whom it will work, and they will survive.

It's, it's individually crushing for the people involved,

but, you know, you've got to carry on.

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