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Breath of Life
BBC2 9:30pm Thursday 13th January 2000

Sheila Loughran NARRATOR (DILLY BARLOW): Since the Sixties the Loughran family have lived with life-threatening illness. Last year medical science confronted them with a terrible choice none of us would wish to make. This film is about that choice and the dilemma of what we should all be allowed to do with our own flesh and blood.

DAMIAN LOUGHRAN: I hope it will give her a large number of very happy years and wish to give her the gift of life to somebody it's a wonderful opportunity to do something which is undoubtedly going to be the, the greatest thing I'll ever do in my life.

JOSEPHINE LOUGHRAN: Nothing that I've learnt has changed my commitment to doing this, but I have to say I've been horrified by some of the information.

SHEILA BATCHELOR: I'm only going to gain whatever way and I've got nothing to lose. Even if it gets to the day and they don't want to do it I don't mind them saying no. I don't want them to suddenly, you know 'cos it's just not fair that they should don't need to suffer, you know I just just don't want it to ruin any part of their lives.

NARRATOR: Sheila Batchelor suffers from cystic fibrosis, the most common genetic disorder in this country. It is an incurable disease which is slowly destroying her lungs. She needs to be on oxygen 24 hours a day.

SHEILA BATCHELOR: Everything you do you just need to breathe to do anything and even rolling over in bed and you just get breathless even rolling over in bed sometimes on a bad day and you just, you need, need the oxygen for just, you know, and it infects every single thing that you do, every movement that you make.

NARRATOR: Sheila's lungs contain faulty cystic fibrosis genes. This means they cannot clear away bacteria and are being constantly infected. Over time, these infections have badly scarred her lungs. Ultimately her lungs will stop functioning and she will die of suffocation. Sheila inherited a defective copy of the CF gene from both of her parents. When Harry and Mary Loughran married and started a family they were unaware that both of them carried this gene. Harmless in a single carrier, the combination of these genes is deadly. One in 4 of their children - Josephine, Damian, Ann and Sheila - were likely to be born with cystic fibrosis, but the Loughran family were unlucky.

DAMIAN LOUGHRAN: It's a throw of the dice and as far as my parents were concerned they had, they had 4 children and 2 of them were cystic which is not fair really.

NARRATOR: Both Damian's 2 younger sisters, Ann and Sheila, were born with this terrible disease. In the 1960s little could be done to combat it. Ann grew up making visits to hospital virtually every month. By 13 she needed to be on oxygen constantly. She died at the age of 15 in 1974.

JOSEPHINE LOUGHRAN: Ann dying obviously changed all our lives. I know it was, you know, very poignant because you know when she died she took off her oxygen mask and said thank you Mummy, and that, that was the way she left us.

NARRATOR: Since Ann's death, the Loughran family have lived with the threat of losing Sheila as well. Modern drugs and physiotherapy have kept Sheila alive much longer than her sister Ann. She was able to have a career and in 1989 she married Martin Batchelor. But 14 months ago her health deteriorated rapidly. Now at the age of 36 she, too, needs to be on oxygen 24 hours a day. Sheila's last hope was to be given a completely new set of lungs, free of the faulty CF genes which had destroyed her own. She was put on a waiting list for a lung transplant from a dead donor. Sheila has now been told she only has months to live.

DAMIAN LOUGHRAN: We did have all these hopes and dreams for her, but you know at the moment they're doing something like one a month. There's 150 people waiting for that and, you know, the reality of it is that 50% of the people on waiting lists die. You know there just isn't the availability of organs.

NARRATOR: By March last year the Loughran family were beginning to face their worst fear. But then they heard about a radical new surgical procedure, called living donor lung transplantation. Conceived of in America, this controversial operation is being pioneered in the UK by Professor Sir Magdi Yacoub, the world famous heart/lung transplant surgeon. Using two living donors instead of a dead donor, it is the latest attempt by medical science to solve the donor organ shortage.

PROF SIR MAGDI YACOUB: We were having at least 50% of the patients die on the waiting list. A lot of them come to the hospital admitted and it's really awful to watch these young people deteriorating when you know that there is something which can be done for them. This operation can transform the life of patients with cystic fibrosis and it is a wonderful thing to see, when it succeeds.

NARRATOR: The lungs are one of the most complex and fragile organs in the human body. They're divided into segments called lobes, 3 on the right and 2 on the left. This radical new operation is only possible because a single lobe can function as a working lung in another person. Because the recipient needs a pair of lungs two living donors each have a lobe removed, one from their right lung, the other from their left lung. Their lobes do not grow back. The recipient's own diseased lungs are taken out and the two healthy lobes, free of any faulty CF genes, are then transplanted into them. But living donor lung transplantation is still an experimental procedure. Only a handful of these groundbreaking operations have been performed in Britain because the risks to the two healthy donors make them highly controversial. One of the key transplant doctors in Professor Yacoub's team is only too aware of why many others surgeons are not prepared to perform this operation.

D GAVIN WRIGHT (Consultant Anaesthetist): The donor supplying a lobe of one of their lungs for transplantation has the risk of the anaesthetic, the risk of bleeding from where the lobe of the lung has been excised and the risk of the haemorrhage, of the risk of infection, wound infection, all of these can end up as a series complications and can potentially kill a live, healthy donor.

NARRATOR: Unlike living kidney donor operations, lung transplants are both more dangerous for the donors and far less successful for the recipients. This is because the lung is a very fragile organ and does not transplant easily. Of the 6 of these transplants done at Harefield, only 3 recipients have survived longer than a month, a result which divides opinion about this operation at the hospital.

GAVIN WRIGHT: The people who are against this type of transplantation, live related lung transplantation, in essence say that the end doesn't justify the means, the outcome is not good enough, frequently enough to justify putting the donors at risk. During the period when it's still an experiment, still a risky business it's excused by the fact that the recipients die without it and that sort of gives you a licence of a kind to try virtually anything.

NARRATOR: With Sheila so sick the family immediately embraced the hope this risky new possibility offered them. The first question was who would be able to donate? Martin, Sheila's husband, had an incompatible blood group and Sheila's parents, Mary and Harry, were told they were too old. Sheila's brother and sister, Damian and Josephine, were found to be compatible donors, however. But medical science now created an agonising dilemma for the family: in order to save Sheila's life Damian and Josephine would be exposed to all the dangers of major surgery. These dangers meant that Josephine's partner Keith and Damian's partner Elisabeth would also be affected by any decision to go ahead. Despite the risks involved, the entire family committed themselves to saving Sheila. They felt the donor organ shortage had left them with no alternative and decided to take part in this film to highlight the problem.

JOSEPHINE LOUGHRAN: This is an opportunity for Sheila that Ann didn't have and even with Sheila to, to know that her health was deteriorating and to watch her go through the various crises at times when she's had infections and she's been at a low ebb it's, it's been very frightening, very painful and we've always felt so helpless and now I don't.

SHEILA BATCHELOR: So I can't believe it. It's just sort of having another avenue to go down instead of just sitting here, you know.

DAMIAN LOUGHRAN: When, when we actually talked about it on the phone there was, there was a lot of, lot of tears about the whole thing, you know she said at the time you know if, if it happens how, how could I ever repay you for doing this which is I mean she'll, she'll repay me by coming along and dancing at my 40th party. That, that'll do.

NARRATOR: For doctors offering this new hope to the family needed to ensure that Damian and Josephine were both fit enough to lose a single lobe from their lungs.

NARRATOR: After a series of tests, they were told that Josephine would donate her lower left lobe and Damian his lower right lobe. As the family shares common tissue types, their lobes are closer matched than those from an unrelated donor. This offers the hope that Sheila's body will be less likely to reject Damian and Josephine's transplanted lobes.

DAMIAN LOUGHRAN: Well I'm losing my bottom right lobe which is one of the biggest so it's going to be sort of between 20 and 25% loss of lung function. I'll see, I won't, I won't run a marathon again, but I don't want to run a marathon again. Luckily I have enormous lungs and that's going to stand me in good stead and, and Josephine is the same. In many ways that's a, that's a small price to pay to save the life of somebody you love.

NARRATOR: On the day of the operation, Sheila's diseased lungs will be removed and the new lobes from Damian and Josephine then transplanted into her. These lobes should quickly expand to fill Sheila's chest and give her the oxygen she so desperately needs. By using lobes which are completely free of the faulty CF genes, the operation should ensure that Sheila will never have cystic fibrosis in her lungs again.

SHEILA BATCHELOR: I think this is so unique that to be told that you were ill and then you'll be better again I think it's so unique because it's going to be like I had CF and then I'm not going to have it. It's like going to be given a whole new life again, a brand new life, so I don't think many people'd be given that.

JOSEPHINE LOUGHRAN: And at one stage we were talking about how they actually physically fit the lobes in, into Sheila and to me that is, it deserves the most enormous amount of respect. I, you know I think I understand what happens, but that it's possible is almost beyond belief, it really is.

SIR MAGDI YACOUB: Well she's got the typical features of cystic fibrosis, you can see that the lung is destroyed…

NARRATOR: Only half of these pioneering transplants performed at Harefield have been successful. The outcome of Sheila's operation may determine whether the hospital's controversial living donor programme will continue.

SIR MAGDI YACOUB: So hopefully she will have nice lungs at the end of this.

NARRATOR: With a date now set for the transplant, Sheila was more optimistic than she had been for months.

SHEILA BATCHELOR: This is as far as I go. Do I have to take off more? I don't want to take off anymore.

NARRATOR: Having made their decision to go ahead, Damian and Josephine were now facing the risks of a major operation.

SIR MAGDI YACOUB: And 24.

NARRATOR: They would be at risk from a number of different infections, from bleeding and there could also be problems for the lung where the lobe was removed.

SIR MAGDI YACOUB: 7.

NARRATOR: After the operation, there would be considerable pain and a permanent loss of lung function.

SIR MAGDI YACOUB: 94, OK.

DAMIAN LOUGHRAN: Where would the incision be?

SIR MAGDI: The incision will be on the side here and you could get aches and pain for up to 6 months or a year. Was the question about insurance?

DAMIAN: How, how this sort of thing affects things like life insurance and, you know, 'cos you're obviously going into an operating theatre voluntarily rather than because it's necessary, how that affects those, you know because it is a very different situation if something goes wrong.

SIR MAGDI If something happens.

NARRATOR: Damian was concerned about the possibility of his partner, Elisabeth, losing him. No donors have yet died, but there have been several worrying donor scares in America where more of these operations have been performed.

SIR MAGDI YACOUB: Now how are you going to react, how is society going to react to the death of a donor? I think it's an extremely difficult question. The important thing is to concentrate on making sure that although it is, it sounds unrealistic that the risk can be reduced to zero percentage.

GAVIN WRIGHT: If you can't cope with the possibility of a donor death you shouldn't be doing this because the potential is always there and is going to happen one day and when it does it's going to be a tragedy that's going to have to be measured against the ecstasy of the survivors.

DAMIAN LOUGHRAN: We had a, a sort of tea out in the back garden on Bank Holiday Monday and the parents came over and Sheila and Martin were there and a few, few other friends and we had a bit of, bit of a, bit of a tearful chat about that then, but yeah I've had, got a very, got a very moving letter from my parents yesterday.

NARRATOR: Many surgeons believe it is always wrong to operate on a healthy person, even if they want to save a dying relative, but Professor Yacoub has come to feel otherwise.

SIR MAGDI YACOUB: What is very important and we wanted to talk to you about is the idea of living related transplantation. Our training is to try and make people better, so to operate on somebody who is normal is totally against the grain, but we consider that only if the persons know precisely what they are doing and they want to do it very much, that we feel that morally, ethically we are not in a position to stop them having what they want.

SHEILA BATCHELOR: I feel very privileged that they wanted to do it. I, it really came from them the idea. I didn't approach them and they came for it and I just, you know I just see it as a way out for me you know, but I don't want to… I, I feel guilty that it's taking something from their lives, but I don't want it to be at all a risk to them 'cos in a way I've got nothing to lose and they've got more to lose than I have.

GAVIN WRIGHT: There is always the argument that can anybody who's had this possibility pointed out to them, the possibility of saving a relative's life and all the peer group pressure, the pressure from the rest of the family for them to go along with us because they happened to be the right blood group and have the right lungs and genes, is it possible to be a voluntary donor under those circumstances, isn't there always coercion of some sort and I, I believe that there is, but at the end of the day the decision is made by those people, under coercion or not.

DAMIAN LOUGHRAN: You know you can look at your brother now or your sister or you son and think would I/wouldn't I? It's, you can't, you can't,. you can't make that decision until you have somebody you love slowly withering away in a corner of a dark room and I think once people are put in that context I don't think anybody would refuse it.

JOSEPHINE LOUGHRAN: There's just no point in over-doing my own emotional pressure. I'd just like to get on with it, I'd like to wake up and find that it's been successful and that's really what I concentrate on and I don't feel proud of myself or, you know, the things that people say about doing a wonderful thing I, I just don't think like that because I'm so frightened about it.

NARRATOR: Dr. Wright meets Damian and Josephine individually to spell out the dangers they face from this operation.

GAVIN WRIGHT: These things are all a matter of, of cost and benefit and the cost is to you and the benefits to your sister. What have you been told they are?

JOSEPHINE LOUGHRAN: The risks…

GAVIN: Risk of dying.

JOSEPHINE: Yeah, risk of dying, the risk associated with having an anaesthetic in itself, the risk associated with an infection in the wound and you know sort of air in the lung and I think that's about it isn't it?

GAVIN: At the end of the day what it's important for you to realise and I'm sure you do, but some people don't, is that a transplant, if she survives it, is not going to be the end of the story. Doesn't mean she lives happily ever after a normal life and there is this process called obliterative bronchialitis which is our biggest bugbear that affects transplanted lungs where the air passages, the small, at the smaller end as they taper down just progressively block off with the passage of time. That's what kills lung transplant patients in the long run.

JOSEPHINE: But you can get that without having a transplant.

GAVIN: Very rarely, very rarely, but if you have a transplant you're almost inevitably going to get it eventually.

JOSEPHINE: Right.

GAVIN: And so the likelihood is that in 5 years' time your sister's going to be short of breath again and she's going to be struggling for her life and this is why it's controversial. People say the gain is not worth the risk, some people say.

JOSEPHINE: Well I, I'm a believer in determination and Sheila's got it in buckets and if that's got anything to do with health as it has (Yes) then she'll fight and she'll, she'll get the best out of it. That's what's got her this far.

GAVIN: Yeah. There are 3 anaesthetists involved obviously, but I think that I will probably be anaesthetising you and so we'll meet again Tuesday night.

JOSEPHINE: Right.

GAVIN: Alright, unless you want somebody else (TALKING TOGETHER)

JOSEPHINE: No, just wondered why, why you'd be doing me.

GAVIN: Because there's the chap who'll be anaesthetising your sister only agrees with doing the person having the transplant, 'cos they're going to have the transplant anyway and he doesn't want to have anything to do with perhaps killing a healthy person.

JOSEPHINE: Is that right?

GAVIN: So that's, that's his moral decision. There are people who won't have anything to do with this at all and so they won't be there at all.

NARRATOR: There is also some unexpected information for Damian.

DAMIAN LOUGHRAN: Is there a greater benefit because the, the actual live donor part of it is, it's, you know it's a, it's a fresher organ and it's…

GAVIN WRIGHT: This was the big hope originally because you're related, you would have closer genetic compatibility and less rejection, but the reality is that statistics up until now have shown that that hasn't made the difference we hoped it would. Did they suggest to you that that was a benefit?

DAMIAN: It was talked about, yeah, at one time.

GAVIN: How long have you been looking into this?

DAMIAN: Well when everybody first heard of it I think it was about January February time.

GAVIN: Right the difference between this and an ordinary lobectomy is that we need to take a little bit of the heart, a cuff of atrium with the lung which means that there is a, it's not a serious bit of heart, but there is a longer suture line directly onto the heart and so there is a greater risk of bleeding.

DAMIAN: Take a, a piece, a piece of heart as well.

GAVIN: A small piece of heart. Where the veins come back from the lung to the heart bringing the oxygenated blood back we need to take just a little cuff, OK. At any stage if you decide that this is not for you, you mustn't feel at all shy to say so and then it comes out that I rejected you as unsuitable for the operation, OK, and we'll find a medical reason or excuse and we'll give you the negatives as well.

DAMIAN: OK.

GAVIN: Are you still happy to go ahead?

DAMIAN: I'm still happy to go ahead.

GAVIN: OK, so you're a brave man.

DAMIAN: Well-informed brave man.

GAVIN: Doesn't make it easier. Sorry to put you through this, but we just have to know that you're in, you know you're not sort of under any illusions.

DAMIAN LOUGHRAN: We've got a lot of new things today, a lot of cold, hard facts, but I think, I think the effect of being spoon-fed with facts over the last couple of weeks, but it was the full 3-course meal today though.

JOSEPHINE LOUGHRAN: There's you know so much more detail about the actual operation, the actual effect on us and the sort of, the, you know, the mechanics of the whole thing which you know quite shocking. I don't think anything can prepare you for the intensive care unit and seeing the people that are in there at the moment and knowing that in a week's time those kind of tubes and things coming out of you. It's just absolutely mind-blowing wasn't it?

DAMIAN: I think it was the fact that, you know that there is a natural deterioration of the lungs, transplanted lungs anyway which is, which is going to occur and will have a finite limit on, on the extra life that's being given.

JOSEPHINE: Yeah that was the first time I'd heard that today too. I know we'd had the statistics but I didn't realise it was sort of fairly inevitable.

DAMIAN: They've certainly done their very best to put us off, but it hasn't worked.

SHEILA BATCHELOR: No, I think they're marvellous. I just, I'm very lucky I think.

DAMIAN LOUGHRAN: I think I'm making up for 39 years of not crying very much. It's obviously a very emotional time, you know there are just certain things that can trigger you. I kicked the shit out of the fridge last weekend for no particular reason. That's just a, obviously things build up and there's an awful lot of emotion there and things are kind of spiky.

GAVIN WRIGHT: If my son needed a lung transplant in order to live I used to have a glib answer which was that I would donate any bits of my lung that were necessary for him to have his transplant, but I hope that somebody would stop me from doing this, save me from myself and I vacillate back and forth.

JOSEPHINE LOUGHRAN: It's, you know, people react in very different ways and I think the most honest people are the ones that say I couldn't do that, I couldn't do that because you know it doesn't cost anybody to say oh I would do that because they're never likely to have to.

WOMAN: Just the usual four is it?

JOSEPHINE LOUGHRAN: I've had some terrible moments when I've thought about it all and I've been shocked at some of the things that have come into my head and I can't understand where those thoughts come from. You know it's almost like having a, a devil in your head that you didn't know was there.

SIR MAGDI YACOUB: I said to Damian and Josephine because I believe it to be true that they represent THE best and the most noble sentiments human beings can have and therefore, I mean I have terrific respect and admiration for them.

NARRATOR: Several days before the operation the family bought Sheila a piano. It is her birthday in a few weeks' time.

SHEILA BATCHELOR: Oh it's lovely, thank you.

HARRY LOUGHRAN: Are you going to give us a recital?

SHEILA: No. No it's lovely. Made for that spot I think.

HARRY: Will it go further into the recess or…

SHEILA: Yeah, well I've got to take that off the wall, yeah. I just want to get back to, to life really. You know it was just really great all the things that people keep doing like working and having that Sunday feeling 'cos I've got work on Monday, oh things like that, yeah. Going out, eating, seeing your friends and meeting people and going for a drink. Walking up the road, posting letters on your own, you know, instead of getting everyone else to do everything for you.

NARRATOR: It is 7am on the morning of the operation. (ACTUALITY CHAT)

WOMAN: See you tomorrow. (ACTUALITY CHAT)

NARRATOR: This operation has never been filmed before. It involves 3 separate theatres staffed by 3 surgical teams working to Professor Yacoub. He estimates Sheila's chances of survival at around 70%.

SIR MAGDI YACOUB: They are very nervous and frightened, as one would expect them to be, but it's a combination of things. Impressive group of people. (ACTUALITY CHAT

NARRATOR: The first stage of this 8 hour operation is to remove Sheila's diseased right lung. Two hours in Professor Yacoub is struggling as it is very badly stuck to the chest wall. (ACTUALITY CHAT)

NARRATOR: In Theatre 2 Damian's surgeon has started to separate his bottom right lobe from the rest of his lung. In Theatre 3 Josephine has just been anaesthetised. The transplanting of her lobe will take place after that of Damian's. Sheila's diseased right lung is finally removed. She's now breathing with just one of her lungs, but it proves to be not enough to keep her alive and her heart begins to falter. The team has to swiftly connect her to the heart/lung bypass machine which takes over her breathing and blood circulation. Next, Prof. Yacoub goes into Theatre 2 to help with the removal of Damian's lobe. It is proving more difficult than expected because it is not separating as easily as it should from the lobe above. Once removed, Damian's lobe appears tiny because it is deflated. As it is now being starved of a blood supply it is immersed in a special solution of drugs to help preserve it.

SIR MAGDI YACOUB: I need a lot of ice, lots and lots in the chest. How you doing, alright?

NARRATOR: The Professor begins to connect Damian's lobe to the windpipe and blood vessels in Sheila's chest. It is a slow and delicate process. Two hours later, Damian's lobe is now working as the first of Sheila's new lungs. Her diseased left lung has been removed in readiness for Josephine's lobe.

Again, Professor Yacoub himself carries the lobe through to Theatre 1. Like Damian, Josephine's lobe did not easily separate from the one above it. This makes their newly exposed lung surfaces more vulnerable to air leaks, something which may delay their recovery and make it more painful. To try and prevent this, the surgeons bathe the area with a special glue which is then set with an ultraviolet light, but no-one can be sure whether it has completely worked until after the operation. Five hours after his operation started, Damian is wheeled into the intensive care unit. Several hours later Dr. Wright is waking Josephine. Finally, Sheila is also ready to leave the theatre. She is breathing with her new lungs. The operation has lasted over 12 hours.

SIR MAGDI YACOUB: Her lungs were much worse than even I anticipated. She must have been really suffering and a lot more disability than she made out much…

MARTIN BATCHELOR: She never showed it.

SIR MAGDI: Yeah, she didn't, so, so that took us some time to try and take it out.

HARRY LOUGHRAN: She was pretty low (Yeah) and it was almost only just in time was it?

SIR MAGDI: I think so. Very much so.

HARRY: is she actually using the implant.

SIR MAGDI: Absolutely. I mean since the morning, since lunchtime she's been living on the new lung, which is much better than what she has ever had. Josephine and Damian, they should be walking around and ready to leave hospital within 3, 4, 5 days at the most. If they don't continue to have air leak. This is the one thing which could delay their discharge and their recovery.

HARRY: Please God and thanks to you everything will be fine.

SIR MAGDI: It's a pleasure. We've only done our duty.

NARRATOR: Sheila had a rocky first night because there was a dangerous build-up of fluid on her new lungs. Two days later she still needs to be on a ventilator to support them. Because of this she's kept sedated. Her condition is critical.

MARY LOUGHRAN: You'll be pleased with your hair today. It's in a lovely ponytail with a white ribbon on it. Went to church this morning and it was packed the church. I couldn't believe it. It must be a good community. You'll have to come back to play your piano soon.

NARRATOR: Damian and Josephine's progress is slow. The glue used to seal their air leaks during the operation has been only partially successful. They have substantial pockets of air around their lungs and the chest drains used to clear this air and fluid make breathing painful.

JOSEPHINE LOUGHRAN: It's been really much worse than I expected. I could never have dreamt that it would have been like this. DAMIAN LOUGHRAN: I felt like shit from the operation. It kind of comes and goes really. You can wake up and feel good and then feel bad again.

JOSEPHINE LOUGHRAN: The pain's been absolutely incredible. I, I've no way of describing it and the feeling of total helplessness, but you know kind of what I want to do is to be, to look as fit as possible for when Sheila wakes up, look like it was a complete breeze.

NARRATOR: A week later Sheila is still sedated and on a ventilator. She has also been put on to a kidney machine to help drain the build-up of fluid around her lungs. Her condition continues to be critical.

SIR MAGDI YACOUB: There are good things and there are worrying things, but the good things are that her lungs, the new lungs are improving all the time and they are providing good oxygen, good gas exchange and it's looking better every day, so that is quite encouraging. On the negative side what's really worrying us is the fact that she's very, very thin and we don't want to give her intravenous nutrition because this could increase the chances of her getting infected and that could be extremely serious.

MARTIN BATCHELOR [pointing at photographs]: That was Ann actually, that was her sister before. This was a surprise birthday party that I did for her. That was 10 years ago at the end of this month that will be (MUMBLES). This is a really good one of the whole family together.

NURSE: Morning.

JOSEPHINE LOUGHRAN: Hello.

NURSE: Morning, how are you?

JOSEPHINE: Fine thanks. How's she doing?

NURSE: Oh she's not too bad at the moment. A little bit more stable compared to yesterday afternoon.

JOSEPHINE: Hello Sheila. It's your wedding anniversary today. Happy anniversary Sheila. 10 years, not bad.

NURSE: Yeah, Martin rang this morning.

JOSEPHINE: I'm sure he did.

NURSE: He'll come along later.

DAMIAN LOUGHRAN: He's going to bring your wedding anniversary present.

JOSEPHINE: Yes, time for that later. She looks as though she's smiling a bit.

DAMIAN: Yeah. She's opening her eyes a bit.

JOSEPHINE: Yeah, she, I think she's, well she, she will be listening. You are listening aren't you?

NARRATOR: As the days and then the weeks go by, Sheila remains sedated and dangerously thin. Damian and Josephine's air pockets are taking much longer to reduce than anyone expected. Three weeks after the operation, Sheila is still sedated. Prof. Yacoub has some worrying news for Mary, Sheila's mother.

SIR MAGDI YACOUB: This shadow very strange shadow in the right side of the chest. We discovered that it is an abscess around the lung and being an abscess we are worried about it. We have since drained it and got rid of the pus and that has helped, but it, it is a setback and it is worrying us quite a bit. Sorry? That is still a problem. She's not absorbing food, but we are hoping that that will come back. She, she is, she's indeed quite a fighter. Without a shadow of doubt and we will do everything possible. Are you alright? All the best, bye-bye.

NARRATOR: That night the family was all called back to Harefield. Despite the medical team's best efforts they could not control the infection that was raging through Sheila's body. At 2.55am Sheila finally lost her fight for life.

SIR MAGDI YACOUB: Every time we lose a patient there is great sadness because you know this is a human being and you get to know them, so there is an emotional part attached to it. The other thing is it is a disappointment because people have worked extremely hard and what we try and do is to try and analyse why and then make a decision about whether to offer this type of operation to people or not, whether the risks are too high. The risk/benefit ratio is it in favour of the patient or is it just not acceptable.

JOSEPHINE LOUGHRAN (FIVE MONTHS LATER): Everything has changed, everything. I've tried not to think about it very much and deliberately tried to keep as busy as possible, just, I just sort of locking into a bit of a shell and just growing strong on the inside I think because I probably look exactly the same, but you know I've got the scars to prove it and I've got things that have changed inside me and it's a matter of perspective on life I guess because everything has become clearer and sharper and more, more black-and-white maybe because every day is so important for everyone. I'm sure that an answer will be found in cystic fibrosis. In a way perversely I hope it's not too soon because it would be too close, but for, for everybody else - Sheila would go mad if she heard me say that - for everybody else I hope it's tomorrow.

DAMIAN LOUGHRAN: I think that's what people need to see is, is successful outcomes and until there's a, a few more of those it's going to continue to be something controversial so that's why it has to continue 'cos there isn't much of an alternative. People know more and more about this, they're going to want, want to be involved in it and it's, you know that's what's going to, that's what's going to drive the process. It's not that the people think it's right or wrong, you know those people who are saying it's right or wrong aren't in a position, aren't close enough to it to be able to say that.

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