A Chance at Life

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0:00:02 > 0:00:05The general surgery unit at Great Ormond Street

0:00:05 > 0:00:08performs operations that many other hospitals are unable to do.

0:00:08 > 0:00:10I tell you, it's nailed down.

0:00:10 > 0:00:12Wow.

0:00:13 > 0:00:17This is one operation you wouldn't want to lose control of.

0:00:17 > 0:00:20This is a very dangerous thing to do for a living.

0:00:20 > 0:00:22It's not dangerous for me,

0:00:22 > 0:00:26but it's extraordinarily dangerous for the people that we try and help.

0:00:26 > 0:00:29He's going to bleed. I think we need to get the hell out of here.

0:00:29 > 0:00:32Would you like to take some deep breaths for me?

0:00:32 > 0:00:37I want to be happy with him running around, playing - normal life,

0:00:37 > 0:00:39just to live normally.

0:00:39 > 0:00:41When you're one of the best in the world,

0:00:41 > 0:00:44everyone wants you to say yes.

0:00:44 > 0:00:50I'm very happy to try and take this out, but I, I just don't know,

0:00:50 > 0:00:54I can't do what's impossible for me. I can only do what I can.

0:00:54 > 0:00:59But saying yes means you must also live with the consequences.

0:01:01 > 0:01:04Part of the mind-set is that you're going to make people worse,

0:01:04 > 0:01:06in order to make them better.

0:01:06 > 0:01:09Not all bad results are because of the surgeon,

0:01:09 > 0:01:14but, nonetheless, if you do it, you are responsible.

0:01:30 > 0:01:35Edward Kiely is one of Great Ormond Street's most experienced surgeons.

0:01:35 > 0:01:38He's carried out over 15,000 operations.

0:01:41 > 0:01:45He is a world specialist in removing paediatric tumours.

0:01:45 > 0:01:48Many of his patients are referred to him

0:01:48 > 0:01:51as they are considered to be inoperable.

0:01:58 > 0:02:02Nine-year-old Eliana has a massive tumour in her stomach.

0:02:02 > 0:02:06Although it's not cancerous, she's had 15 months of chemotherapy

0:02:06 > 0:02:10to try and shrink it as it was considered to be inoperable.

0:02:11 > 0:02:13But the chemo has been unsuccessful

0:02:13 > 0:02:16and the tumour has continued to grow.

0:02:16 > 0:02:19Surgery is now her only chance of survival.

0:02:30 > 0:02:32Hello there. I'm sorry to be so late,

0:02:32 > 0:02:34but I had a couple of lectures to give in Oxford,

0:02:34 > 0:02:36and I came charging back.

0:02:36 > 0:02:39I drove back at 100 miles an hour, just to see you.

0:02:39 > 0:02:41'The only treatment for it is to remove it.'

0:02:41 > 0:02:45Otherwise, it will keep on growing,

0:02:45 > 0:02:46and, uh...

0:02:48 > 0:02:50..will eventually kill her.

0:02:50 > 0:02:53I think probably she's lost a bit of weight, yeah.

0:02:59 > 0:03:01OK, have a seat.

0:03:02 > 0:03:07It's a big lump and you know that it displaces the wee blood vessels in her tummy,

0:03:07 > 0:03:10and is attached to them and all that.

0:03:10 > 0:03:12I've explained that to you in the past.

0:03:12 > 0:03:17So we need to separate off the vital structures and take the lump out.

0:03:20 > 0:03:23It's normally possible to do that.

0:03:23 > 0:03:26Normally we can take these lumps out.

0:03:26 > 0:03:28Even at the size that it is?

0:03:28 > 0:03:32The size actually is not relevant at all.

0:03:32 > 0:03:36It's more what it's attached to, and in what way it's attached.

0:03:36 > 0:03:37Now...

0:03:40 > 0:03:44..these things are always dangerous, yeah?

0:03:44 > 0:03:47And just trying to do it, in itself, is dangerous, yeah?

0:03:49 > 0:03:53There's no way of not entering into danger, I'm afraid.

0:03:53 > 0:03:55That's just the way it is.

0:03:55 > 0:03:58But, normally, the operation is successful,

0:03:58 > 0:04:01we can take the thing out and have done with it.

0:04:01 > 0:04:05Any organs in particular in danger, or you just don't know?

0:04:05 > 0:04:08- I think the left kidney is the one mainly at risk.- Right.

0:04:08 > 0:04:10Has she been on morphine a lot or not?

0:04:10 > 0:04:15Um, I would say about the last four weeks.

0:04:15 > 0:04:16Right.

0:04:16 > 0:04:19When she lies down, that is when the pain comes more, in the evening.

0:04:19 > 0:04:22- She gets a lot of pain. - Where does she get pain?

0:04:22 > 0:04:25- Just, like, her whole... Where the tumour is.- Right.

0:04:26 > 0:04:28Yeah, bit unusual.

0:04:28 > 0:04:31- To have the pain?- Yeah.

0:04:31 > 0:04:33- She...has got a fear of dying.- Yeah.

0:04:33 > 0:04:36I think maybe that could be tied up with the pain as well.

0:04:36 > 0:04:38- Right. It's just a bit odd.- OK.

0:04:38 > 0:04:40She'll be better off without it, really.

0:04:40 > 0:04:43- OK, thank you.- No problem. - Thank you so much. Good luck.

0:04:43 > 0:04:46- Thank you. OK, I'll see you tomorrow. - Thank you, yeah.- Bye.

0:04:56 > 0:04:58You're doing what you said you ought to do,

0:04:58 > 0:05:02you're doing what you said should happen, and if it goes badly wrong,

0:05:02 > 0:05:05and occasionally things do go badly wrong,

0:05:05 > 0:05:09you bear the responsibility for giving the advice

0:05:09 > 0:05:12and for doing the operation.

0:05:12 > 0:05:14Scissors now.

0:05:17 > 0:05:19Ha-ha!

0:05:20 > 0:05:23There's the kidney and there's the spleen.

0:05:25 > 0:05:28The huge tumour has grown into her liver and kidneys.

0:05:28 > 0:05:32The challenge is to remove all of it without damaging them.

0:05:32 > 0:05:35I tell you, it's nailed down.

0:05:35 > 0:05:36Wow.

0:05:39 > 0:05:41How the hell am I going to get this thing?

0:05:41 > 0:05:44This is one operation you wouldn't want to lose control of.

0:05:48 > 0:05:50Holy God!

0:05:52 > 0:05:56'It's a thing called a fibromatosis. It's a benign tumour.

0:05:56 > 0:05:59'In other words, it doesn't spread round the body,

0:05:59 > 0:06:01'but it grows relentlessly.'

0:06:01 > 0:06:02Knife now.

0:06:02 > 0:06:04'If you don't take the whole thing out,

0:06:04 > 0:06:07'it grows again, so the whole thing needs to come out.'

0:06:10 > 0:06:12Suction.

0:06:12 > 0:06:14Spot of bleeding.

0:06:14 > 0:06:15I need a stitch in a second.

0:06:18 > 0:06:20Scissors.

0:06:22 > 0:06:24Do you see an easy way of doing this?

0:06:24 > 0:06:27- No.- No, neither do I, unfortunately.

0:06:31 > 0:06:33Well, I make them look difficult. That's for sure.

0:06:33 > 0:06:37That's it, that's the urethra there, that thing down there,

0:06:37 > 0:06:39so I'll just go down the medial to it there.

0:06:41 > 0:06:45Because of its size, the tumour must be delicately freed,

0:06:45 > 0:06:48piece by piece, from her vital organs.

0:06:48 > 0:06:52We'll try and get the kidney off it up here.

0:06:52 > 0:06:54- Do you think that's through there? - I think it is.

0:06:54 > 0:06:58There's no point in preserving a kidney that's got a tumour in it.

0:07:06 > 0:07:08It's not very heavy, actually.

0:07:13 > 0:07:15Mind you, most of it is still in there.

0:07:19 > 0:07:23I think there's nothing happening, is there? No, then it's OK.

0:07:23 > 0:07:24OK, Martine, we'll take a break.

0:07:28 > 0:07:32After five hours of operating, the surgical team take a break.

0:07:34 > 0:07:36All these operations terrify me.

0:07:38 > 0:07:40They're very frightening, aren't they? Yeah.

0:07:40 > 0:07:42They get frightened, too.

0:07:42 > 0:07:45They're thinking, "What's he going to do now?"

0:07:48 > 0:07:49Right.

0:07:52 > 0:07:54Time to rock and roll.

0:07:57 > 0:07:59OK, there's another little bit.

0:08:01 > 0:08:04Hasn't made a huge difference, has it?

0:08:04 > 0:08:07The biggest piece of the tumour is still attached.

0:08:09 > 0:08:12- It is amazing.- It's just attached in one place.

0:08:12 > 0:08:15Absolutely. OK, so we'll take this thing first.

0:08:20 > 0:08:22That's nice, to have it out, isn't it?

0:08:22 > 0:08:24Can we weigh it, please?

0:08:28 > 0:08:32Weigh the whole lot, please, if you can.

0:08:32 > 0:08:35Have you got a bucket for it?

0:08:35 > 0:08:38OK. So, now, is there anything left?

0:08:41 > 0:08:43OK, put it all in the one thing.

0:08:44 > 0:08:46Well, that is, that's...

0:08:46 > 0:08:48Oh, that's lung. That's lung. Right.

0:08:51 > 0:08:53- What's the max on the scale? - The max is one pound.

0:08:57 > 0:08:59Eliana's tumour weighs three kilograms.

0:09:08 > 0:09:10OK, all fine, all done, all out.

0:09:10 > 0:09:13- Oh, my gosh! The whole thing?- Yeah.

0:09:13 > 0:09:17- Oh, that's amazing. And how is she? - She's fine.- Yeah?- She's fine.

0:09:17 > 0:09:20She's down and she'll be ready to come back, I'd say, in about an hour.

0:09:20 > 0:09:24They'll just let her wake up quietly and slowly, but she's fine.

0:09:24 > 0:09:26- No problems?- No problems.

0:09:26 > 0:09:29Oh, my gosh! I'd like to hug you, I'm sorry! Thank you so much.

0:09:29 > 0:09:32- Thank you so much. - Thank you so much.- You're welcome.

0:09:32 > 0:09:34I knew you could do it!

0:09:34 > 0:09:38Amazing! Thank you so much, I can't even tell you how I feel.

0:09:38 > 0:09:40That's OK. OK, so far as we know, it's all out,

0:09:40 > 0:09:43everything I've taken out, everything I could see.

0:09:43 > 0:09:46Her kidneys are OK, her spleen's OK,

0:09:46 > 0:09:49and everything inside is OK. Nothing else needed to come out.

0:09:49 > 0:09:52- And all the veins and the arteries? - All fine. All fine.

0:09:52 > 0:09:53Oh, my God!

0:09:53 > 0:09:55There you go.

0:09:55 > 0:09:57Thank you so much. So, can we go down now or...?

0:09:57 > 0:10:01They'll call you down in a little while and then they'll bring her back up here.

0:10:01 > 0:10:05- OK.- Thanks a lot. - OK, no problem. There you go. Bye.

0:10:25 > 0:10:27She's done well

0:10:27 > 0:10:30and I hope that that's the end of the problem for her.

0:10:30 > 0:10:32It'll be very nice if it is, you know.

0:10:34 > 0:10:36End of story,

0:10:36 > 0:10:38tumour gone, cured,

0:10:38 > 0:10:41and just get on with her life. That'd be nice.

0:10:42 > 0:10:44Unbelievable.

0:10:56 > 0:10:59Although it's called the General Surgery Unit,

0:10:59 > 0:11:02it is a specialised department.

0:11:02 > 0:11:06Each year, they perform surgery on over 1,500 children.

0:11:06 > 0:11:09Many of the operations are unique to Great Ormond Street.

0:11:17 > 0:11:21For the past year, 17-year-old Sebastian, originally from Colombia,

0:11:21 > 0:11:25has been living in Great Ormond Street, being prepared for surgery.

0:11:25 > 0:11:28He was born with a condition called oesophageal atresia,

0:11:28 > 0:11:32which is a condition where the oesophagus, or swallowing tube,

0:11:32 > 0:11:33has not formed completely.

0:11:35 > 0:11:38When he eats and drinks, there is spill-over into his windpipe,

0:11:38 > 0:11:40and into his lungs, of the content that he eats,

0:11:40 > 0:11:43and that's had a long-term damaging effect on his lungs as well.

0:11:43 > 0:11:45Hello, Sebastian. How are you?

0:11:48 > 0:11:51Sebastian must be fed intravenously every day.

0:11:52 > 0:11:54- Playing guitar. - Playing guitar? No way!

0:11:56 > 0:12:00When he was a child, surgeons in Colombia tried to

0:12:00 > 0:12:01create an artificial oesophagus.

0:12:01 > 0:12:03Some eight to ten operations later,

0:12:03 > 0:12:07and having been in hospital for the first 18 months of his life,

0:12:07 > 0:12:10was left without an oesophagus, and the doctors there had used

0:12:10 > 0:12:12part of the colon, or large bowel,

0:12:12 > 0:12:15to bridge the gap between his throat and his stomach.

0:12:32 > 0:12:34When I first met him and his family,

0:12:34 > 0:12:37I'd said that I felt the surgery was possible to do.

0:12:37 > 0:12:40It was going to be very high-risk surgery

0:12:40 > 0:12:43but, at the end of the day, if he didn't have some procedure now,

0:12:43 > 0:12:47then the deterioration in his lung function was going to kill him.

0:12:49 > 0:12:51He's wanted the operation since the day he got here.

0:12:51 > 0:12:54He was just like, "Fix me. Do whatever you need to. Fix me."

0:12:57 > 0:13:01Initially, it was very difficult for him to get to know all of the staff

0:13:01 > 0:13:04and to trust everybody because he'd been sort of really unwell

0:13:04 > 0:13:06when he first came into hospital and it was very frightening,

0:13:06 > 0:13:09he spoke no English, so I think it's been really difficult for him.

0:13:12 > 0:13:13He's now learnt more English

0:13:13 > 0:13:16and he's got a good relationship with the staff.

0:13:16 > 0:13:18- Can I help you? - Yeah, you can come and help me.

0:13:18 > 0:13:21- OK. In what?- In the office.

0:13:21 > 0:13:25At 17, Sebastian must legally consent to his surgery.

0:13:25 > 0:13:29It's an enormous decision for him to make.

0:13:29 > 0:13:32You're talking about making decisions that might materially

0:13:32 > 0:13:34affect his life, and about his survival.

0:13:34 > 0:13:37He is making some important decisions for himself

0:13:37 > 0:13:40and he's demonstrated that he has good understanding about it.

0:13:44 > 0:13:46OK, so, I'm going to start

0:13:46 > 0:13:50and say that I'm going to go through all of the questions he's given me.

0:13:50 > 0:13:51MAN TRANSLATES INTO SPANISH

0:13:51 > 0:13:54OK. Now, in doing this operation,

0:13:54 > 0:13:58we've had to deal with some difficult decisions

0:13:58 > 0:14:03and understand exactly what an operation of this importance means.

0:14:05 > 0:14:09If we were to go back to a situation of Sebastian being out of hospital,

0:14:09 > 0:14:14trying to eat and drink again, it would put him at significant risk

0:14:14 > 0:14:18of developing a serious infection of his chest, losing weight and I think

0:14:18 > 0:14:22that would be a very big threat to his life in the very short term.

0:14:30 > 0:14:32MAN TRANSLATES FOR MR CURRY

0:14:32 > 0:14:33Oh, right. OK.

0:14:33 > 0:14:36If I didn't think that the operation had a chance of success,

0:14:36 > 0:14:39I wouldn't be putting Sebastian through it.

0:14:41 > 0:14:43So, "How many hours does the operation take?"

0:14:43 > 0:14:45is question number one.

0:14:47 > 0:14:50It's going to take probably anywhere from eight to 12 hours.

0:14:53 > 0:14:57And we will want Sebastian to go and be looked after in the

0:14:57 > 0:15:02intensive care unit, for anywhere from five to ten days after the operation.

0:15:02 > 0:15:05"How long after the operation will I have to wait to eat?"

0:15:05 > 0:15:08I don't think it will be in the first two weeks.

0:15:09 > 0:15:11HE SPEAKS SPANISH

0:15:16 > 0:15:19Do I have to carry more weight or this is enough, what I have now?

0:15:19 > 0:15:21Let's put it this way,

0:15:21 > 0:15:25if he was to maintain his weight as it is, that would be just fine for me,

0:15:25 > 0:15:29but if he can put some more on, that would be even better.

0:15:29 > 0:15:32OK. Anything else? OK.

0:15:32 > 0:15:33Good.

0:16:03 > 0:16:06His main anxiety seems to be around going to intensive care afterwards.

0:16:06 > 0:16:08It doesn't seem to be the surgery.

0:16:08 > 0:16:12It doesn't particularly seem to be how he'll be after the surgery, either.

0:16:12 > 0:16:16It's mostly around what will his scars look like and what will intensive care be like.

0:16:17 > 0:16:19It's OK. It's OK.

0:16:27 > 0:16:29Don't be scared.

0:16:29 > 0:16:32What's wrong?

0:16:32 > 0:16:35So you will go to sleep, then you will be here for some time,

0:16:35 > 0:16:39then you wake up, but for you it will feel like two minutes.

0:16:39 > 0:16:43- You won't remember any of what has gone on.- OK.

0:16:46 > 0:16:51Listen, don't be scared, OK,

0:16:51 > 0:16:58because it's always more scary to imagine

0:16:58 > 0:17:00than to see.

0:17:00 > 0:17:02WOMAN TRANSLATES INTO SPANISH

0:17:07 > 0:17:10- OK?- OK.

0:17:10 > 0:17:11Come on.

0:17:11 > 0:17:13NATHAN LAUGHS

0:17:15 > 0:17:18All right. We will walk round, Sebastian,

0:17:18 > 0:17:20and you can look if you want to look,

0:17:20 > 0:17:24but you can come back as many times as you feel you need to.

0:17:26 > 0:17:28- Organise the colours. - Organise the colours?

0:17:28 > 0:17:32- I don't like the colours. - You don't like the colour?

0:17:34 > 0:17:38I can't really decorate the walls for you, sorry.

0:18:31 > 0:18:33While Sebastian's operation is planned,

0:18:33 > 0:18:38the general surgeons are on call for emergency referrals from around the country.

0:18:38 > 0:18:44It's 2am and a newborn baby has been transferred to Great Ormond Street.

0:18:44 > 0:18:47Doctors suspect his bowels have perforated

0:18:47 > 0:18:51and are leaking into his abdomen, endangering his life.

0:18:51 > 0:18:53Mr Kiely is the surgeon on call.

0:18:55 > 0:18:58Mr Kiely, Barney here. Just to let you know that

0:18:58 > 0:19:01the antenatal perforation baby has arrived on ICU.

0:19:01 > 0:19:05So he was born at about 1.30 yesterday morning,

0:19:05 > 0:19:08born in a very poor condition,

0:19:08 > 0:19:12and he didn't have his first heartbeat till about 17 minutes,

0:19:12 > 0:19:15requiring cardiac massage.

0:19:15 > 0:19:19And, also, on his brain scan,

0:19:19 > 0:19:22they have done a CFAM with a fluid bolus.

0:19:22 > 0:19:24There's an abdominal X-ray...

0:19:24 > 0:19:27The extent of the baby's brain damage is still unknown,

0:19:27 > 0:19:31but the surgeons must deal with the immediate problem of his stomach.

0:19:31 > 0:19:36Tummy mildly distended, stretchy and shiny.

0:19:36 > 0:19:39OK. See you then. Bye.

0:19:46 > 0:19:50This baby has undoubtedly got a problem in his tummy,

0:19:50 > 0:19:53and I think there is no way of avoiding an operation.

0:19:55 > 0:19:57So we could do it tonight or we could do it tomorrow or

0:19:57 > 0:19:59we could do more investigations,

0:19:59 > 0:20:02but I can't see any way that we can avoid doing an operation on him.

0:20:02 > 0:20:07OK, I need a non-toothed, please, and a knife.

0:20:09 > 0:20:14And so, I'll be just concerned that by not operating he would get worse.

0:20:17 > 0:20:18How are you doing?

0:20:18 > 0:20:20Fine, thank you,

0:20:21 > 0:20:25This must be the gas-filled thing in the middle.

0:20:25 > 0:20:26In other words...

0:20:26 > 0:20:29Ventilation is pretty good.

0:20:29 > 0:20:32But I don't see where the blind end of it is.

0:20:32 > 0:20:36Mr Kiely discovers that the baby's bowel has twisted,

0:20:36 > 0:20:38causing a blockage that must be removed.

0:20:38 > 0:20:41There is an awful lot of bowel proximal to us.

0:20:59 > 0:21:01There you go, histology.

0:21:01 > 0:21:04Can I have a culture swab, please?

0:21:07 > 0:21:11But the other end is stuck down and it's going to be...

0:21:11 > 0:21:14It's going to bleed and, given the renal failure and all the rest of it,

0:21:14 > 0:21:16I think we need to get the hell out of here.

0:21:16 > 0:21:18OK, thanks very much.

0:21:23 > 0:21:26The baby is taken to intensive care to recover.

0:21:26 > 0:21:30Only now can the doctors turn their attention to the issue of his brain damage.

0:21:30 > 0:21:34When he initially had a CFAM test to just check the cerebral function

0:21:34 > 0:21:38at his local hospital, initially it showed severe injury,

0:21:38 > 0:21:43and we know from previous studies that when we say

0:21:43 > 0:21:48there is severe injury, then there is some kind of irreversible damage.

0:21:48 > 0:21:50What that means in terms of long-term prognosis

0:21:50 > 0:21:52is something we have to wait and see.

0:21:54 > 0:21:57There's no way that I can make predictions as to what might be

0:21:57 > 0:21:59the case in five or ten or 15 years' time.

0:22:01 > 0:22:04I worry about what it might be like,

0:22:04 > 0:22:09but there's no way anybody can tell me.

0:22:09 > 0:22:12I don't know and nobody else can tell me.

0:22:14 > 0:22:16It's not for you to say

0:22:16 > 0:22:19this family should not be allowed to have this burden,

0:22:19 > 0:22:20if there's going to be a burden.

0:22:20 > 0:22:22But, at the end of the day, nobody can tell me

0:22:22 > 0:22:26what's going to happen to this baby, so I treat it like any other baby.

0:22:35 > 0:22:39The following day, there's been no progress in his overall condition.

0:22:42 > 0:22:43- Hi.- Hi.

0:22:43 > 0:22:45What's happening?

0:22:45 > 0:22:48Current trend is down, his potassium is less than five,

0:22:48 > 0:22:52he's still hypernatraemic, but you guys are managing that.

0:22:52 > 0:22:54He's been anuric since birth?

0:22:54 > 0:22:57And he's now coming up to three days of age and...

0:23:01 > 0:23:05He needs to do something soon, otherwise he has no chance.

0:23:15 > 0:23:18A few days later, the baby has improved slightly,

0:23:18 > 0:23:21but his condition is still critical.

0:23:22 > 0:23:26To see him from not moving at all to now making movements

0:23:26 > 0:23:31and looking more what as you would call a normal baby,

0:23:31 > 0:23:35who would be at home, would be looking like

0:23:35 > 0:23:38and actions that they're doing, it's...

0:23:38 > 0:23:41Mum is very, very happy.

0:23:41 > 0:23:46And, hopefully, this afternoon Mum should get her first cuddle.

0:23:46 > 0:23:50Yeah. I know! That's the bit we all look forward to.

0:23:50 > 0:23:52We're all very excited about that.

0:23:52 > 0:23:53Mum doesn't know yet.

0:23:53 > 0:23:56She knows we're hoping to take the tube out,

0:23:56 > 0:23:58but that's all she knows at the moment.

0:24:00 > 0:24:05In paediatric surgery, there's an awful lot of ethical things to consider,

0:24:05 > 0:24:09especially with a child who's got multiple abnormalities,

0:24:09 > 0:24:14or a child whose long-term outcome is going to be quite compromised.

0:24:14 > 0:24:16No matter how good your treatment,

0:24:16 > 0:24:19the child's potential is strictly limited.

0:24:19 > 0:24:22You have a child who's alive and well,

0:24:22 > 0:24:25and some people would say, "Well, that's fine for you,

0:24:25 > 0:24:30"but you've given the parents a child who needs constant attention forever."

0:24:30 > 0:24:34Whereas if you hadn't intervened, the child might have died

0:24:34 > 0:24:36and they would have had a better life.

0:24:36 > 0:24:41But in the end, I suppose for us the child is the patient,

0:24:41 > 0:24:45and it's not that you ignore it, or that it's not important,

0:24:45 > 0:24:51but you can't go worrying about the lifestyle of the relatives 15 years down the line.

0:24:51 > 0:24:53I mean, that's not your business.

0:25:02 > 0:25:06The general surgeons meet regularly to assess difficult cases.

0:25:09 > 0:25:12Today they are discussing the successful removal

0:25:12 > 0:25:15of Eliana's tumour with the oncologists.

0:25:15 > 0:25:17And Mr Kiely, quite amazingly,

0:25:17 > 0:25:20has operated and got this out,

0:25:20 > 0:25:22so how did you do that, Ed?

0:25:22 > 0:25:25Compared to the average neuroblastoma, it wasn't...

0:25:25 > 0:25:28- It was a cinch? - It wasn't in the same league.

0:25:28 > 0:25:33I mean, it was a bit sticky, but they're not as infiltrative.

0:25:33 > 0:25:38This would be considered by most people simply to be inoperable.

0:25:38 > 0:25:42So did you find the blood vessels going round the back of it?

0:25:42 > 0:25:43MR KIELY CLEARS HIS THROAT

0:25:43 > 0:25:48Yes. But, honestly, almost anybody could have done this, seriously.

0:25:48 > 0:25:50- Really?- Yeah, absolutely. - Seriously?- Yeah.

0:25:50 > 0:25:53I mean, we didn't know that when we started but...

0:25:53 > 0:25:57But could we have done better resolution imaging for you to predict that?

0:25:57 > 0:25:58No. Honestly, no.

0:25:58 > 0:26:01- So you think you have to go and look?- I'm afraid so, yeah.

0:26:01 > 0:26:03Anyway, I'm thrilled with the outcome, thank you very much.

0:26:05 > 0:26:08It's Eliana's last day in hospital.

0:26:10 > 0:26:12You look quite different to me.

0:26:12 > 0:26:14I see the bags are packed,

0:26:14 > 0:26:17- so your mummy's going home anyway, is that right?- Holiday's over!

0:26:17 > 0:26:19- And you're going to stay, is that right?- No, I'm going.

0:26:19 > 0:26:22No? You're going as well. Excellent.

0:26:22 > 0:26:24OK, home you go. Fantastic.

0:26:24 > 0:26:26Fantastic. OK, looks fine.

0:26:26 > 0:26:28Thank you. Thank you so much.

0:26:28 > 0:26:30OK, no problem. No problem. It was nice to help.

0:26:30 > 0:26:33Do you want to say anything to Mr Kiely?

0:26:33 > 0:26:35- Thank you.- That's OK. See how you go.

0:26:35 > 0:26:38- Thanks a lot.- OK, bye now.- Bye.

0:26:38 > 0:26:40- Thank you, Barney.- Bye.

0:26:43 > 0:26:44Say goodbye to your room.

0:26:46 > 0:26:50- MR CURRY:- I like children's surgery because of the fact that

0:26:50 > 0:26:51if you do something and you get it right,

0:26:51 > 0:26:56you give somebody 70 or 80 years of a normal life...

0:27:00 > 0:27:04..and that children generally are designed to get better,

0:27:04 > 0:27:09and that really is the biggest help for us as children's surgeons.

0:27:12 > 0:27:15Ah, so, Elli, what are we going to do when we get home?

0:27:15 > 0:27:17INAUDIBLE

0:27:23 > 0:27:25After a year of intravenous feeding,

0:27:25 > 0:27:29Sebastian has put on enough weight for his operation.

0:27:29 > 0:27:32Mr Curry has come to have a final discussion with him,

0:27:32 > 0:27:34before he formally consents to the surgery.

0:27:34 > 0:27:39So, now a couple of days away from the planned operation on Friday.

0:27:39 > 0:27:41WOMAN TRANSLATES INTO SPANISH

0:27:41 > 0:27:44And it's something we've talked a lot about,

0:27:44 > 0:27:47in terms of the surgery that we need to do.

0:27:50 > 0:27:54But now we get to the stage where I need to go through that again,

0:27:54 > 0:27:57because I'm going to be looking for permission to go ahead with

0:27:57 > 0:28:01the operation from Sebastian, with assistance from his mum.

0:28:01 > 0:28:04And I want to start that process today.

0:28:06 > 0:28:09This is just some drawings that I've made.

0:28:09 > 0:28:12First of all, this one shows the three openings, one in the tummy,

0:28:12 > 0:28:14one in the chest, and one in the neck.

0:28:14 > 0:28:17Mr Curry explains that he's going to pull Sebastian's stomach

0:28:17 > 0:28:22up into his chest, and connect it to his throat so he can eat again.

0:28:22 > 0:28:25And this part of the stomach will then be brought up

0:28:25 > 0:28:28and joined to here, so it looks like this.

0:28:28 > 0:28:32So, we now need to talk about what are the risks of the operation.

0:28:34 > 0:28:38And the operation is one that has significant risk,

0:28:38 > 0:28:41in terms of his life.

0:28:41 > 0:28:45And I've estimated that risk to be at around 10%.

0:28:47 > 0:28:50And that really means a one in ten chance

0:28:50 > 0:28:53of not surviving after the surgery.

0:28:56 > 0:29:02The illness that he has and the treatment that it needs creates,

0:29:02 > 0:29:06I think, a much bigger risk to his life, than the 10% from the surgery.

0:29:13 > 0:29:18So, although this is an operation that has significant risk,

0:29:18 > 0:29:21I think it's the best long-term answer to making sure that

0:29:21 > 0:29:25Sebastian stays healthy and well for the rest of his life.

0:29:31 > 0:29:32OK.

0:29:34 > 0:29:36INTERPRETER: One question.

0:29:41 > 0:29:47Please tell me you haven't operated on nine people this week.

0:29:47 > 0:29:49LAUGHTER

0:29:49 > 0:29:53He's absolutely right. I haven't operated on nine people this week.

0:29:56 > 0:30:01You do have to understand what it means for a family,

0:30:01 > 0:30:06because if you are somebody who can be completely detached,

0:30:06 > 0:30:10you'll never really understand

0:30:10 > 0:30:14what it is for a family to have a child who's either

0:30:14 > 0:30:16having a hernia operation...

0:30:16 > 0:30:17What could be simpler?

0:30:17 > 0:30:21It's just a hernia operation. It's a day case. I do 100 a year.

0:30:21 > 0:30:22Why are you so upset?

0:30:22 > 0:30:26It's a huge thing. It's a huge thing for your child to have an operation.

0:30:33 > 0:30:37My son's had two operations here and, you know, I've, I've kissed him

0:30:37 > 0:30:40on the forehead when he's gone under anaesthetic...

0:30:40 > 0:30:42and my God, I tell you, it's really hard.

0:30:42 > 0:30:45He was only having his toenails taken out, for crying out loud!

0:30:45 > 0:30:49And I think understanding a little bit about the family,

0:30:49 > 0:30:52what they're going through, helps you.

0:30:52 > 0:30:54OK, I'll see you tomorrow.

0:30:54 > 0:30:57Just to wish you all the best of luck tomorrow

0:30:57 > 0:31:00and everything is going to be fine, we are certain...

0:31:00 > 0:31:02- Yes.- ..that it's going to...- Me too.

0:31:04 > 0:31:07It's an end to a long journey. Well, actually it's not the end.

0:31:07 > 0:31:11- It's the middle of a long journey, let's put it that way.- Yeah.

0:31:11 > 0:31:14- OK.- Thank you so much. See you tomorrow.- See you later.

0:31:34 > 0:31:38Aarin is five and is being treated for a rare form of cancer.

0:31:42 > 0:31:45He has a tumour in his abdomen, a neuroblastoma,

0:31:45 > 0:31:48which must be removed to give him every chance of surviving.

0:31:50 > 0:31:53The surgeons tried to remove it last year,

0:31:53 > 0:31:55and they couldn't take it out

0:31:55 > 0:31:58because it was too attached to some of the key vessels.

0:31:58 > 0:32:00Come on! After you, sir.

0:32:03 > 0:32:06And, yeah, so that was a huge setback for us

0:32:06 > 0:32:10because, just before that, he was clear of all his secondary cancer,

0:32:10 > 0:32:14and the tumour was the only thing that needed to be taken out.

0:32:14 > 0:32:17So where shall I listen for your heart, then?

0:32:17 > 0:32:21- Shall I listen to it there?- Is that the heart?- Hmm, I'm not sure. - I don't think so.

0:32:23 > 0:32:27Aarin has been receiving a radical new antibody therapy in Germany,

0:32:27 > 0:32:30in the hope that the tumour will become operable.

0:32:30 > 0:32:31And again.

0:32:31 > 0:32:33AARIN BREATHES DEEPLY

0:32:35 > 0:32:37Now the hope is that the tumour has become smaller

0:32:37 > 0:32:39because of all of that and is more...

0:32:39 > 0:32:43If it's not become smaller, at least it's become more easier to remove.

0:32:43 > 0:32:47Just push against your tummy, that's it. Good boy.

0:32:49 > 0:32:51And so we are hoping now that the surgeons will come

0:32:51 > 0:32:54and say, "Yes, we can remove it."

0:32:54 > 0:32:55Give me your hand.

0:32:58 > 0:32:59That's it.

0:33:04 > 0:33:08Mr Kiely attempted to remove the tumour last year, but he failed.

0:33:09 > 0:33:12Last year was horrible, it was absolutely horrible,

0:33:12 > 0:33:13and made no progress at all.

0:33:15 > 0:33:18He needs to look at the scans to see if there's any change.

0:33:24 > 0:33:27OK, so here you are, and there it is.

0:33:29 > 0:33:32Yeah, that's probably in the same size,

0:33:32 > 0:33:34just judging from where the heart is.

0:33:34 > 0:33:38The scan shows there has been little change in Aarin's tumour.

0:33:39 > 0:33:44But you have to say most of the disease is at the top of this.

0:33:44 > 0:33:48It may be a bit more unpleasant down here.

0:33:49 > 0:33:52But if this is inferior to the diaphragm,

0:33:52 > 0:33:55and it is then by definition separated from the aorta,

0:33:55 > 0:33:57- then that ought to come away.- Mm-hm.

0:33:59 > 0:34:02I wouldn't know whether that's the tumour or not. It might be.

0:34:07 > 0:34:12Mr Kiely cannot tell from the scans if he can successfully remove the tumour.

0:34:12 > 0:34:16The only option is to operate again.

0:34:16 > 0:34:18Do you see any changes on the tumour?

0:34:18 > 0:34:20To me it looks a little bit smaller...

0:34:22 > 0:34:27..but it's not the size of the tumour that decides whether you can take it out.

0:34:27 > 0:34:31It's how it is attached to the blood vessels.

0:34:31 > 0:34:34That's what decides in the end whether this is possible or not.

0:34:34 > 0:34:36OK.

0:34:36 > 0:34:38And you can't tell that from the scan.

0:34:38 > 0:34:41I'm very happy to try and take this out,

0:34:41 > 0:34:44but I-I just don't know.

0:34:44 > 0:34:45OK?

0:34:49 > 0:34:51And if we do not...

0:34:51 > 0:34:55- If we are not successful in removing the tumour...- Yes?

0:34:55 > 0:34:57What are the repercussions then,

0:34:57 > 0:35:02I mean, with regards to his, you know, eventual remission?

0:35:03 > 0:35:07Because that's the only thing that's remaining at the moment.

0:35:07 > 0:35:12Absolutely. The simple answer is that if we can take the tumour out,

0:35:12 > 0:35:15we believe that it gives him

0:35:15 > 0:35:19an increased chance of coming through this,

0:35:19 > 0:35:22but it's not a huge difference, yeah?

0:35:22 > 0:35:25It's an improved chance,

0:35:25 > 0:35:28but it doesn't mean, if we fail again, that he has no chance.

0:35:28 > 0:35:29It's not like that.

0:35:31 > 0:35:35And the number who survive after successful surgery

0:35:35 > 0:35:39is just a little bit greater than the number who survive after no surgery,

0:35:39 > 0:35:40or failed surgery.

0:35:40 > 0:35:43But you're dealing with small margins

0:35:43 > 0:35:46and you're trying to give him every possible chance.

0:35:46 > 0:35:50But it's not an either or, yeah?

0:35:50 > 0:35:52So it's an extra chance of surviving,

0:35:52 > 0:35:56but it doesn't mean he has no chance or a much, much lesser chance.

0:35:56 > 0:35:57- It's not like that.- OK.

0:35:57 > 0:36:01OK. I'll do my best for him,

0:36:01 > 0:36:03but I can't...

0:36:03 > 0:36:07I can't do what's impossible for me. I can only do what I can.

0:36:07 > 0:36:08I appreciate that.

0:36:13 > 0:36:16And it's very similar to the last time.

0:36:16 > 0:36:19'General surgeons will always want to try,

0:36:19 > 0:36:23'rather than to give up without trying.'

0:36:27 > 0:36:32So, it's very difficult not to try.

0:36:32 > 0:36:33Very difficult, yeah.

0:36:39 > 0:36:40Yeah, we can go now.

0:36:40 > 0:36:42- Slowly, slowly!- OK?

0:36:42 > 0:36:45- Thank you very much. - OK, I'll see you tomorrow. OK, bye.

0:36:56 > 0:37:02So, here in surgery will - I have no doubt - have me at the absolute limit of my ability.

0:37:02 > 0:37:03That's what I expect.

0:37:10 > 0:37:13And that's where I was when I operated on him last year,

0:37:13 > 0:37:15and I couldn't do it.

0:37:16 > 0:37:19Only an idiot wouldn't be frightened by that.

0:37:19 > 0:37:21Can I put my little light on your finger?

0:37:21 > 0:37:23Ah, you've had this done before, haven't you?

0:37:23 > 0:37:25Which finger would you like?

0:37:25 > 0:37:27That one?

0:37:27 > 0:37:31I suppose some days you might feel more courageous than other days, I don't know.

0:37:33 > 0:37:37A very good surgeon I once worked for, who was an orthopaedic surgeon,

0:37:37 > 0:37:43he said he would never have somebody operate on his back who wasn't frightened.

0:37:43 > 0:37:46I thought that was a very interesting statement.

0:37:46 > 0:37:50And a lot of the good surgeons I worked for got very wound up.

0:37:50 > 0:37:53I'm not sure they would admit to you they were frightened,

0:37:53 > 0:37:55but they certainly looked like they were very frightened,

0:37:55 > 0:37:57and they were very good surgeons.

0:37:59 > 0:38:01And you go to sleep, OK?

0:38:01 > 0:38:03Night milk and go to sleep.

0:38:03 > 0:38:07That's right. OK, you can give him a little kiss.

0:38:07 > 0:38:09We'll look after him and we'll see you when it's good, OK?

0:38:09 > 0:38:11See you a bit later on.

0:38:18 > 0:38:20- Thanks, Dad.- See you later on.

0:38:26 > 0:38:29MR KIELY: Give me a knife, long handle.

0:38:31 > 0:38:34Aarin's tumour is embedded around his major blood vessels,

0:38:34 > 0:38:38and Mr Kiely must cut between them with absolute precision,

0:38:38 > 0:38:39leaving nothing behind.

0:38:41 > 0:38:43OK. So there we are.

0:38:43 > 0:38:47And there we are, part of it anyway.

0:38:47 > 0:38:51That is undoubtedly tumour, because it's all calcified and peculiar.

0:38:53 > 0:38:56The tumours are wrapped around the blood vessels

0:38:56 > 0:38:59and so, to take the tumour out, you've got to free them.

0:38:59 > 0:39:04You've got to cut them, so you cut with the knife between the tumour and blood vessel,

0:39:04 > 0:39:09and there is no space there, and it's not an easy thing to do.

0:39:09 > 0:39:13But sometimes you can't. You simply can't physically do it.

0:39:13 > 0:39:16About one in ten of the patients I operate on,

0:39:16 > 0:39:17I can't take anything out.

0:39:21 > 0:39:22Is that tumour up there?

0:39:22 > 0:39:25There's tumour there, but...

0:39:29 > 0:39:31Tricky here.

0:39:34 > 0:39:36That's a big artery.

0:39:41 > 0:39:43Shall we just plod away?

0:39:43 > 0:39:46I mean, we're moving so far but there's a lot to do.

0:39:49 > 0:39:53All he knows is doctors, nurses, hospital visits - nothing normal.

0:39:53 > 0:39:56He doesn't have friends.

0:39:56 > 0:39:58Doesn't have anything.

0:40:01 > 0:40:02Let's re-evaluate.

0:40:05 > 0:40:07It's very difficult and it's not getting any easier.

0:40:09 > 0:40:12- Very difficult.- Is it?- Mm.

0:40:15 > 0:40:19We're waiting for the day when he will go to school,

0:40:19 > 0:40:22he will have play dates.

0:40:22 > 0:40:25Yeah, that's what I'm looking forward to.

0:40:29 > 0:40:31I'm not enjoying this very much.

0:40:35 > 0:40:37There it is.

0:40:37 > 0:40:42After six hours, the first tiny piece of tumour is removed.

0:40:43 > 0:40:44That's not bad.

0:40:49 > 0:40:50OK.

0:40:50 > 0:40:52Jeepers creepers! What the hell was that?

0:40:52 > 0:40:54Suction, please.

0:40:57 > 0:41:00It takes Mr Kiely ten hours to remove all of the tumour.

0:41:02 > 0:41:03That's it.

0:41:03 > 0:41:05What shall we call that specimen?

0:41:05 > 0:41:09- Er, tissue from hepatic artery. - Tissue from hepatic artery.

0:41:09 > 0:41:12Just to mark the unpleasantness of it all.

0:41:15 > 0:41:18Now that the tumour has been removed,

0:41:18 > 0:41:22statistically, Aarin's chances of survival have improved.

0:41:23 > 0:41:27It isn't fantastic, you know, adrenaline rush. It's none of that.

0:41:27 > 0:41:29Well, for me anyway, it's none of that.

0:41:29 > 0:41:34Just... We've done what we set out to do,

0:41:34 > 0:41:38and it worked and that's good.

0:41:38 > 0:41:41And you don't have to go and tell the parents we failed,

0:41:41 > 0:41:43which is an awful business.

0:41:49 > 0:41:52Hello. All fine. All fine.

0:41:52 > 0:41:55We've taken it out and he's fine.

0:41:55 > 0:41:57Everything?

0:41:57 > 0:41:59All we could see.

0:41:59 > 0:42:00OK.

0:42:02 > 0:42:05It'll be a little while before he's ready to come back,

0:42:05 > 0:42:08but he's fine and he was fine throughout.

0:42:10 > 0:42:12OK.

0:42:12 > 0:42:15- ALL:- Thank you very much.

0:42:23 > 0:42:26It's the day of Sebastian's surgery.

0:42:26 > 0:42:30Mr Curry will attempt to move his stomach up into his chest

0:42:30 > 0:42:31and attach it to his throat.

0:42:33 > 0:42:37This is a street above anything else probably that I'll do this year,

0:42:37 > 0:42:40in terms of the length of the procedure,

0:42:40 > 0:42:44the complexity of the procedure and the danger of the procedure.

0:42:52 > 0:42:53I'm scared.

0:42:53 > 0:42:56- Why do you look scared? - It's not my evening.

0:42:56 > 0:42:59- How are you doing?- All right. - Got some funky shoes on there.

0:42:59 > 0:43:01- MR CURRY:- There's been lots of challenges,

0:43:01 > 0:43:04not only from a language barrier, but from an age barrier,

0:43:04 > 0:43:07but, you know, he's responded to it very well.

0:43:07 > 0:43:08He's been upbeat throughout.

0:43:08 > 0:43:11There have been many difficulties along the way,

0:43:11 > 0:43:14but you just have to speak to the nurses on the ward who say now

0:43:14 > 0:43:15how quiet it's going to be,

0:43:15 > 0:43:17and how they're going to miss him over the weekend.

0:43:17 > 0:43:20He's become part of the furniture up here.

0:43:20 > 0:43:23It's going to be sad to miss him up here for a little bit.

0:43:23 > 0:43:26Everybody's looking forward to getting him back.

0:43:32 > 0:43:37This is one of the department's most challenging operations this year,

0:43:37 > 0:43:40and Mr Kiely will be assisting Mr Curry.

0:43:45 > 0:43:49Instead of having ten years of my experience and 25 years of

0:43:49 > 0:43:52Mr Kiely's experience, you've got 35 years of experience.

0:43:52 > 0:43:57And I just think that the more poundage of years of experience

0:43:57 > 0:44:01stood around the table, the better it is for any individual child.

0:44:01 > 0:44:04Right, we're done.

0:44:04 > 0:44:07OK, so do that stuff that's on the front there,

0:44:07 > 0:44:11because I think that's just a lesion underneath the liver.

0:44:11 > 0:44:14I'm just wondering whether, because it's still attached,

0:44:14 > 0:44:17- whether it provides...- It's an easy way to pull it down?- Yeah.

0:44:17 > 0:44:18Right. It probably is.

0:44:21 > 0:44:23This hiatus, this thing here...

0:44:23 > 0:44:25- I think you could probably... - It is, isn't it?

0:44:25 > 0:44:29- Yes. Yeah, I think so.- Let's just do the edge of the hiatus there.

0:44:29 > 0:44:31Scissors, please.

0:44:36 > 0:44:43So, colon's out and the stomach's ready to bring up into the chest,

0:44:43 > 0:44:48so we're just waiting for a tube that we can pass down through the tunnel where the colon was,

0:44:48 > 0:44:49attach it to the top of the stomach,

0:44:49 > 0:44:51and then bring that up to the neck

0:44:51 > 0:44:54to join it to the remainder of the oesophagus in the neck.

0:45:02 > 0:45:04Well, that moved. It moved.

0:45:09 > 0:45:12It's as tight as a drum up here.

0:45:12 > 0:45:14And down there?

0:45:14 > 0:45:15Tightish.

0:45:17 > 0:45:20I'll put a couple of stays, one on either side,

0:45:20 > 0:45:23double-hitched stays and see if we can hold it here.

0:45:27 > 0:45:29After 12 hours,

0:45:29 > 0:45:33Sebastian's stomach has been successfully attached to his throat.

0:45:33 > 0:45:36He will now be kept in a medically induced coma

0:45:36 > 0:45:38to allow his body to recover.

0:45:41 > 0:45:43The operation went well.

0:45:43 > 0:45:44And Sebastian is well.

0:45:47 > 0:45:51Bringing the stomach up was difficult

0:45:51 > 0:45:54and the new join is quite tight,

0:45:54 > 0:45:57but we were happy with it when we'd finished.

0:45:57 > 0:45:59OK, thank you very much.

0:45:59 > 0:46:02Thank you, thank you very much.

0:46:02 > 0:46:04It went well, we were happy.

0:46:04 > 0:46:07This is good news for me. Thank you very much.

0:46:07 > 0:46:13So he now stays in intensive care, for probably a week to ten days.

0:46:13 > 0:46:15For the first five days,

0:46:15 > 0:46:18he'll be fully asleep and paralysed with the drugs.

0:46:18 > 0:46:19OK.

0:46:21 > 0:46:23- OK, thank you very much. - Thank you very much.

0:46:36 > 0:46:40While Sebastian's surgery was successful,

0:46:40 > 0:46:42two days later, he has developed a massive infection.

0:46:42 > 0:46:45Scans show it has spread to his brain.

0:46:47 > 0:46:51He's going to have a CT scan of his chest and abdomen this morning.

0:46:51 > 0:46:52When did it pop?

0:46:52 > 0:46:54About 11 o'clock last night.

0:46:54 > 0:46:56He remains pyrexial.

0:47:04 > 0:47:06So, I think we'll just try some things with...

0:47:06 > 0:47:10I mean, I haven't seen either of them but Mary, who was on overnight,

0:47:10 > 0:47:13said his neck, particularly, is horrendous.

0:47:13 > 0:47:15It would be nice to...

0:47:15 > 0:47:18We'll probably want to see those at some stage later on today.

0:47:18 > 0:47:20And the CT - head, as opposed to the MRI?

0:47:20 > 0:47:23CT, chest and abdomen today.

0:47:23 > 0:47:25- He had an MRI yesterday of his head...- Right.

0:47:25 > 0:47:28..and they're querying that he might have left-side empyema

0:47:28 > 0:47:31in his chest, which is basically the reason for the CT.

0:47:33 > 0:47:38I think the general problems with the infection in the neck and the abdomen

0:47:38 > 0:47:42would be predictable things following this kind of surgery,

0:47:42 > 0:47:43but I think that the problem,

0:47:43 > 0:47:46potentially, in his head with infection

0:47:46 > 0:47:48is much more catastrophic,

0:47:48 > 0:47:51in terms of what it's going to do to his brain and his,

0:47:51 > 0:47:52you know, him as a person.

0:47:55 > 0:47:58Just don't have that information yet so...

0:48:00 > 0:48:04But it's obviously a very, very worrying time at this stage.

0:48:05 > 0:48:09We've, we've all known him as the person he is

0:48:09 > 0:48:12and, er, we just hope and pray

0:48:12 > 0:48:15that he'll still be that person...at the end of it,

0:48:15 > 0:48:17So, we just don't know.

0:48:19 > 0:48:22Yeah, we just have to wait and see.

0:48:43 > 0:48:46Sebastian's condition has worsened.

0:48:46 > 0:48:49The infection has exposed the carotid artery in his neck

0:48:49 > 0:48:52and if it ruptures, he will not survive.

0:48:53 > 0:48:56There's a process going on inside Sebastian

0:48:56 > 0:48:58and we just don't understand it.

0:48:58 > 0:49:01And not understanding that process sometimes means you just don't know

0:49:01 > 0:49:04what the best thing to do is to control it,

0:49:04 > 0:49:07to, to make him turn the corner, to start to see a healing process.

0:49:07 > 0:49:09At the moment, we're just in a...

0:49:09 > 0:49:13It feels like a spiral of downward deterioration and everything's going wrong.

0:49:13 > 0:49:18Um, and everything that we've done so far hasn't made a difference to that process.

0:49:18 > 0:49:24And our concern is how far down the spiral can we go before he succumbs.

0:49:24 > 0:49:28And unless we start to see some improvement,

0:49:28 > 0:49:31some turning of the corner, some change in his body,

0:49:31 > 0:49:33over the next two or three days,

0:49:33 > 0:49:36I don't think that he could get much sicker without dying.

0:49:42 > 0:49:45An urgent meeting is called to discuss how they can treat

0:49:45 > 0:49:47the infection in Sebastian's neck.

0:49:47 > 0:49:49So I think the main reason

0:49:49 > 0:49:53for discussing him here is to get people's views

0:49:53 > 0:49:55about what investigation should be done next,

0:49:55 > 0:49:57what treatment should be offered.

0:49:57 > 0:50:02When the sedation was reduced and muscle relaxants stopped,

0:50:02 > 0:50:05he was noted to be not very responsive,

0:50:05 > 0:50:10and an MRI scan of his head showed diffuse changes in the brain

0:50:10 > 0:50:14which was described as haemorrhagic encephalitis,

0:50:14 > 0:50:18thought to be possibly related to infection in the wound,

0:50:18 > 0:50:20so he's being treated with

0:50:20 > 0:50:24broad spectrum antibacterials, antivirals and antifungals.

0:50:24 > 0:50:28I guess the question we had about dressings to the wound is that

0:50:28 > 0:50:31he's got quite a lot of liquefication of pus

0:50:31 > 0:50:33and debris in the wound, and we had wondered,

0:50:33 > 0:50:35from a general surgical perspective,

0:50:35 > 0:50:38whether a sugar-type dressing would be appropriate

0:50:38 > 0:50:41to act both as an anti-bacteria sidal agent,

0:50:41 > 0:50:43and also as an absorptive agent,

0:50:43 > 0:50:46which wouldn't require physical packing

0:50:46 > 0:50:50and a sort of manipulation of the tissues in an ongoing way.

0:50:50 > 0:50:53Just put sugar in the bloody wound.

0:50:53 > 0:50:54It works, it does the job,

0:50:54 > 0:50:57it's sterile and it's the fastest way of cleaning the thing.

0:50:57 > 0:50:59And you're not manipulating...

0:50:59 > 0:51:02You're not manipulating, you're not pushing the carotid around.

0:51:02 > 0:51:04It's easy to do - you just keep filling it up,

0:51:04 > 0:51:06wash it out once a day, and then fill it up again.

0:51:06 > 0:51:09- It's the only thing that'll work. You'd agree?- Yes.- Yeah.

0:51:09 > 0:51:15OK. So, sugar dressings for the next few days, week,

0:51:15 > 0:51:20and then, if the infection's under control, possibly...

0:51:20 > 0:51:23Well, the median time to clean an open sternotomy,

0:51:23 > 0:51:25and they know much more about it than I do,

0:51:25 > 0:51:28is about six days - filthy open sternotomies.

0:51:28 > 0:51:32They're sterile in about six days, and that's what you're looking at.

0:51:32 > 0:51:34And you hope his carotid will be OK.

0:51:34 > 0:51:36If his carotid goes, nobody will save him.

0:51:36 > 0:51:40So we will re-look again once...

0:51:40 > 0:51:42- MAN:- Maybe re-discuss next week?

0:51:42 > 0:51:44Yeah, whenever.

0:51:45 > 0:51:47- OK, good.- Thank you very much.

0:51:54 > 0:51:57Having exhausted all antibiotic treatments,

0:51:57 > 0:51:59they are now trying sugar.

0:52:21 > 0:52:23Right, so how is he today?

0:52:23 > 0:52:27He's OK, just apart from this belly pain, he has pain here.

0:52:27 > 0:52:30It started last evening.

0:52:30 > 0:52:32OK. Has he had any breakfast?

0:52:32 > 0:52:33Just some milk.

0:52:33 > 0:52:36He's been taking some pureed food, which would seem to be OK.

0:52:36 > 0:52:38It's just the gastric fluids...

0:52:43 > 0:52:45Look, Mummy, it's a pattern.

0:52:45 > 0:52:50It goes turtle, turtle, car.

0:52:50 > 0:52:55Turtle, turtle, turtle, car.

0:52:55 > 0:52:56There you go.

0:52:56 > 0:52:58OK.

0:52:58 > 0:53:01- NURSE:- The mum asked for it to be stopped this morning

0:53:01 > 0:53:03cos he was in a bit of pain.

0:53:03 > 0:53:06Right. Well, can we try him with some breakfast

0:53:06 > 0:53:08and see how he gets on with eating solids?

0:53:08 > 0:53:10OK. Great.

0:53:10 > 0:53:12- MOTHER:- OK. Thank you, doctor.

0:53:21 > 0:53:24And are we going to go home today?

0:53:24 > 0:53:25AARIN: Yeah.

0:53:25 > 0:53:28- Let's pack up our bags. - Have you packed all your bags?

0:53:28 > 0:53:29Yeah.

0:53:29 > 0:53:31Have you?

0:53:31 > 0:53:36And look, we got Mummy bag.

0:53:40 > 0:53:44Successful operation for an advanced disease like his,

0:53:44 > 0:53:46the benefits are fairly small.

0:53:49 > 0:53:53But if it's your child, you'd take anything.

0:53:53 > 0:53:58If you give them a few extra per cent chance of surviving,

0:53:58 > 0:54:00wouldn't you give it a go? Yeah.

0:54:30 > 0:54:35I've thought 100,000 times about whether what we did was right,

0:54:35 > 0:54:38and whether, even knowing what the outcome was,

0:54:38 > 0:54:42whether I'd do it again, and the answer is yes, I would.

0:54:42 > 0:54:44Because it was, it was the right thing to do.

0:54:44 > 0:54:49It was a chance at life that he...

0:54:49 > 0:54:51He didn't really have another option,

0:54:51 > 0:54:53in terms of what we are able to offer here.

0:54:56 > 0:55:02I thought that all of the planning and everything else that we put into it would be enough.

0:55:04 > 0:55:07But I think nature is a wonderful thing,

0:55:07 > 0:55:11but nature will sometimes come back and just show you who's boss.

0:55:13 > 0:55:17In the nine years that I've been here as consultant,

0:55:17 > 0:55:20I haven't had a relationship with a boy and a family like this,

0:55:20 > 0:55:26to spend a year in hospital getting to know them, and it's...

0:55:26 > 0:55:31You know, I don't have any surgical pride in me about, you know, the challenge of the operation.

0:55:31 > 0:55:34It's just about the boy, the human, the family and, you know, that's...

0:55:34 > 0:55:37I kind of miss him, really.

0:55:38 > 0:55:41You'll have to stop cos I'm going to blub.

0:55:43 > 0:55:47If you're doing big operations,

0:55:47 > 0:55:51on children who are more complicated than normal,

0:55:51 > 0:55:54this sort of thing happens more often.

0:55:59 > 0:56:02I mean, you don't become immune to the thing.

0:56:08 > 0:56:10But in some way, um...

0:56:12 > 0:56:13..you have to carry on.

0:56:17 > 0:56:21There will always need to be an institution like this,

0:56:21 > 0:56:26um, that will take on those operations for those children,

0:56:26 > 0:56:30knowing that they're high risk, but knowing that, that, you know,

0:56:30 > 0:56:34if you have everything that this hospital can give, that,

0:56:34 > 0:56:36if you do that and you do it well,

0:56:36 > 0:56:38you will get good results for children.

0:56:40 > 0:56:42But you won't get it for every child,

0:56:42 > 0:56:46and there is the dilemma - that you have to...

0:56:46 > 0:56:51You, you can't just pack up and give up if, if one child doesn't survive,

0:56:51 > 0:56:56because it's not fair on all those other children in whom it will work, and they will survive.

0:56:56 > 0:56:59It's, it's individually crushing for the people involved,

0:56:59 > 0:57:01but, you know, you've got to carry on.

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