Born at the extremes of prematurity... You just can't keep a heart rate going without a good reason. ...in a netherworld between life and death. I don't think I would want my baby at 23 weeks resuscitated. It's very very difficult. The big question. It isn't that we want to turn the machine off... It's like killing your own child. The ethics complex. I ain't turning no machine off. A story of pain, hope, love and despair. Copyright TVNZ Access Services 2012 Kia ora, I'm Miriama Kamo. They're the babies born four months early in the 23rd week of pregnancy ` born so prematurely their survival stretches modern medicine to the limit. A handful go on to become the miracle babies we see in the women's magazines, but most sadly die. Tonight we have unprecedented access to the babies born in extreme prematurity at a British neonatal unit, and the question asked is a difficult and complex one. Is it always right to keep these babies alive? When should medicine intervene? When should it let nature take its course? The emotions are raw in this story, and by its very nature, some of the images are graphic. Simone has just been born in extreme prematurity. Babies like this, born four months early, don't last long without medical intervention. The Birmingham Women's Hospital is one of the few in the country capable of resuscitating extremely premature babies and keeping them alive. Simone now requires a respirator to breathe. She needs infusions to bolster her blood pressure and to promote blood clotting. Her immune system is only partly developed, so drugs are pumped in to fight off infection. Um, at the moment, she seems in reasonable condition. The skin doesn't look very good and she's bruised, but she's not needing a lot of support from the breathing machine, and at the moment her blood pressure's OK. Simone balances on the very edge of life. If she'd arrived a week earlier, she'd have been classified as a miscarriage and left to die. But Simone was born at 23 weeks ` the earliest point in her foetal development when doctors now believe that resuscitation is worth the effort. Her odds are not good. Only nine out of 100 babies born at this stage will survive. And of those nine, only one will reach adulthood without disability. Simone's now stable, but she has a long way to go. The fact that she's so premature is really against her. We sometimes find with very early babies that they look OK for the first hours or days, but unfortunately still do die over the coming days. So I think we just need to watch her. I'm Adam Wishart, a science writer. I'm going to my hometown, Birmingham, cos it has one of the highest rates of premature birth in Britain. I wanna find out if keeping these babies alive is medicine at its most pioneering and brilliant or is it science pushing the limits of nature to far? It's a subject that many of the medical team themselves find deeply uncomfortable. I don't think I would want my baby at 23 weeks resuscitated. < Why would that be? < Why would that be? Because... I suppose because I know what` what it involves for the baby and the` and the outcomes being so poor` And I suppose it's not just the baby. It's the stress on the whole` the whole family ` the emotional upset that you go through, and then the end result may be a child who's severely disabled and potentially has a very poor` poor quality of life. Looking at it from a nursing point of view, if I had baby that was 23 weeks, and... Would I`? Would I want to go through everything? I don't know. I don't know. But I'm sure that looking at it from` at it if I was the parent, I probably be like most parents here and want everything to be done, because you'd be desperate to have a baby that's... that's healthy. Surprisingly, given that the treatment of 23-week babies is so pioneering, the decision to resuscitate isn't usually taken by doctors. Because of the massive odds against a good outcome, it's a choice that's given to the parents. Claire's in the 23rd week of pregnancy, and her waters have just broken. Her doctors have tried to delay the birth, but it's now imminent. With her partner, Paul, Claire's made the decision that their baby will be resuscitated. I spoke to the doctor this morning, and I said that I'd rather them try and at least help, and if they can't` you know, if it doesn't work, it doesn't work, but at least we know that they have tried. I can't see any reason not to try. If things don't pan out and the worst happens, at least we can turn around and say we tried. Yeah, we had the choice and we went for it. Yep. Ow. Ow. Sorry. Ow. Sorry. It's all right. Claire needs a Caesarean section, because an infection threatens the health of both her and her child. But the unit's clinical director knows that only about half of all babies of this gestation survive the birth. It may be that because the baby's so very early, we won't be able to resuscitate her. And if that happens, she won't survive more than, um, 20 minutes or so. As the surgery gets under way, the resuscitation team are ready. It's important to do it quickly, because babies can change suddenly. When you think about it, this baby has had a circulation going round in the way it does in unborn babies until just now and hasn't needed to use her lungs at all until just now. So a lot of things will start changing really rapidly once she's out in the world, can't maintain a steady temperature and has to rely on her own lungs and her own heart. Tell me if you feel cold, all right? INDISTINCT CHATTER This is what a 23-week baby looks like ` young enough to be aborted, but just old enough for there to be hope. Seeing this, I can't imagine that anybody would stand by and let her die. A tube is forced down her throat and air is pumped into her lungs. Her breathing is regular. Her heart is beating. But many dangers lie ahead. Her ability to cope with an infection at this stage isn't very good. She doesn't have the immunity. She doesn't have the reserves that a bigger, stronger, more mature baby would have. So infections that do happen to these small babies ` they can be overwhelming. Once stabilised, the baby's rushed to intensive care. She already exceeding expectations. That's fine so far, isn't it? She's lovely. She's in really good condition ` better than we thought she might be. Um, wriggly, active, doesn't need much oxygen. Trying to breathe by herself. Got a ventilator helping her along. We just gotta get her up and into the ward and under the monitors. Whereas most women who have just given birth would expect to cradle their baby, Claire must wait. INDISTINCT CHATTER Her daughter Holly weighs just a pound and a third. She's placed in the incubator. At 23 weeks, her lungs aren't fully developed, so a drug is pumped in to help them work. 20 years ago, this just wasn't possible, but now if things go well, Holly will be here for four months, until the time she would have been born. So, little Holly arrives weighing 1 and a bit pounds. Her life is troubled from the outset. Back in a moment. But then an alarm on one of the multitude of machines signals trouble. ALARM BEEPS The doctors try everything to keep Holly alive. Claire's little girl Holly has been born at 23 weeks. If she'd arrived a week earlier, she would have been classified as a miscarriage and left to die. But this wee mite, just slightly bigger than a block of butter, is a fighter. Drugs have been pumped into her lungs to help them work, but then drama and more drama. Now, another reminder ` the story and the images are confronting. Then an alarm on one of the multitude of machines signals trouble. ALARMS BEEP The doctors try everything to keep Holly alive. They put a new breathing tube down her throat. They massage her heart. They pump her with adrenalin. ALARM BEEPS But the signs are bleak. ALARM CONTINUES (SPEAKS INDISTINCTLY) (SPEAKS INDISTINCTLY) (SPEAKS INDISTINCTLY) Sorry, honey? We certainly can. We'll just get her out for you, OK? ALARM BEEPS HEART MONITOR FLAT-LINES (MOUTHS) (SPEAKS INDISTINCTLY) (SPEAKS INDISTINCTLY) (SPEAKS INDISTINCTLY) SOMBRE MUSIC We tried and we failed. And... I don't think we failed because of anything that we did wrong. Erm, but we were unsuccessful` we were ultimately unsuccessful. And a baby has died, and that's really sad. SOMBRE MUSIC I have to use my profession, you know, to the best of my ability. You can't let emotion get into it, but sometimes it does, and you go to the cupboard and you have a good cry and whatever it is. It does effect you. But it's something that you have to suppress. Could you just imagine if all the nurses started blubbering? We'd never get any work done. SOMBRE MUSIC Every year in Britain, a few hundred babies are born in the 23rd week of pregnancy. Their treatment is costing the NHS more than �10 million a year. But with the health service strapped for cash, those that fund these procedures are beginning to question their cost-effectiveness. For me, the big issue is that we're spending an awful lot of money on treatments that have very marginal benefit. Um, and personally, I would prefer to free up that money to spend on providing support, care, um, to people who have much more life-long chronic conditions, and supporting their families. There is nothing in what I've seen over the last 20 years to suggest that I will be do that or people like me will be allowed to do that. The clamour is always for the high-tech ` the new drug, the new wonder drug, the new wonder treatment. So it makes it very difficult. The practice of resuscitating 23-week babies isn't universal. The Dutch have significantly fewer births in extreme prematurity ` probably because of less poverty and fewer teenage mums ` and they have a very clear position on babies born at 23 weeks. If a woman gives birth when she's in the 23rd week, what do you do? The baby is born and is given compassionate and loving care and given to the parents, and they nearly all die within a few minutes or hours. We don't do anything. 23 weeks ` no. (SPEAKS INDISTINCTLY) The consequence of your policy is that you're letting a few die. A very few will. That's` That's` That's true, but.... then it is` that's the case. You're effectively killing a-a-a tiny number of 23-week babies that would have lived. I don't think we are killing them. It's` It's` That is how nature works. Sometimes there's no way you can help these babies. I think we are doing more harm to treat them and then after two or three hours or two or three days or six weeks, the infant will die anyway, having had a lot of suffering and pain and that doesn't do any` it doesn't have any purpose at all. The Dutch position seems hard-headed, but they argue they want to concentrate resources on the most successful procedures. Throughout Europe, survival rates for premature babies born at 24 weeks and above have increased significantly over the last decade. But for those born in the 23rd week, the limit of nature may have been reached. Returning from Holland, I'm struggling with the question ` is it fair on British babies that we subject them to so much traumatic intensive care when their odds of survival are so tiny? Simone is now 10 days old. She might soon be able to breath on her own and her eyelids are no longer fused. Her mother Kelly is 23 years old and has three other children. Her father Simon has five additional children with other mothers. And there might have been more. One reason why Simone is one of the most fragile babies on the unit is that she's the only survivor of triplets. This particular baby has been a complete surprise and a shock to this mum and this family. She only knew she was pregnant a couple of weeks before. She only knew she had triplets one week before, and then she had the babies unexpectedly, so now she's got to deal with... two children who have died and one who is alive, but is having intensive care and could die. < And how do you feel about being here, Kelly? < And how do you feel about being here, Kelly? It's horrible. Yeah, it's horrible. You just don't want to be here. You'd rather be at home with her. She's a little fighter. It's getting to me now. It's really getting to me, seeing her like that. You just think to yourself, you're supposed to be a dad, you're supposed to protect her. Dad is supposed to be the hero. Dad is supposed to look after his little girls. And there's nothing you can do. SOMBRE MUSIC The doctors are beginning to worry that Simone isn't developing as quickly as they might wish. The concern is that if she doesn't improve, then more treatment will only cause her pain, rather than extend her life. But once again, key decisions about medical intervention fall on the parents' shoulders. The doctors needs Kelly and Simon to agree that if Simone deteriorates any further, treatment should be withdrawn. I think that's a huge amount for anybody to cope with, um, let alone, you know, a young lady with other children to look after at the same time. Very very difficult to deal with. And I'm sure she won't have taken in all the possibilities, um, and the ramifications that might happen to this baby in the future. Yes, so A little baby on the brink and the parents having to make some crucial life-death decisions. Is it fair? Back after the break. I'm not sure if it's right to put this responsibility on to the parents. It's very very difficult. It's like killing your own child, you know. Simone is one of the more fragile babies, the sole survivor of triplets, and doctors are worried she's not developing as quickly as they would want. If she doesn't improve, then more treatment would only cause added suffering, rather than extending her life. Once again, the painful decisions about medical intervention fall on the parents. Doctors need Kelly and Simon to agree that if Simone deteriorates, treatment should be withdrawn. What a position. Reporter Adam Wishart was allowed to sit in on that difficult discussion. Just waiting for Philippa. Is it Kelly? And...? Is it Kelly? And...? Simon. Is it Kelly? And...? Simon. Simon, right. What we were actually wanting to say is that if she deteriorated and became really sick, > she'd still get the same treatment she's getting now and we'd check that everything was still working, > but what we wouldn't want to go ahead and do is lots of other interventions that would not be pleasant for her and probably wouldn't, in the end, do her any good and probably wouldn't work in any case, > and that's something we often say with these very premature babies. It isn't that we want to turn the machine off. We're obviously` We're still actively giving her intensive care treatment at the moment. It's just if she were to deteriorate, how far we would go in trying to resuscitate her. > I mean, how`? How do you feel about that? > Oh, I ain't turning no machine off. Oh, I ain't turning no machine off. No, I` > Oh, I ain't turning no machine off. No, I` > If it` Even if it came to it. No way. I'm not talking about turning the ventilator off in any way, shape or form. > It's just... You know, we would go so far, but we wouldn't want to put her` make her last hours unpleasant, but obviously we need you to decide how` how you feel about that. I'm not sure if it's right to put this responsibility on to the parents. But the law constrains doctors from making critical decisions without the parents' consent, even if they're in the best interests of the baby. Do you think there'll ever be a point where` where you'd want the doctors to not try and help? No. There'd never be a point like that. She'll go on` She'll go on till the end. No, they'll do everything they can. I'd never like` If they've made the decision ` like, touch wood ` to turn the machine off. I could never do it. I'd never do it. Although if she's suffering, it sounds` it'd be bad not to do it. Well... What person would? I don't think anybody would turn the machine off. I know I couldn't do it. I wouldn't be able to do that. Cos I'd feel to myself, then, 'Well, you've killed your own child.' I couldn't live with that. If I was a parent and I knew what I knew now, I would say, 'Enough is enough.' But you see, I can only speak for myself. I've not had a child that's gone through what this little baby's going through, so I can't say, but from a medical background, I'd say, 'Look, this is enough. My child's suffering. Stop it.' But from a parent's point of view that's not been through the medical` had any medical background, it's very very difficult. It's like killing your own child, you know. And when parents make a decision, they have to live with it for the rest of their lives. When you see her, you look at her, and there's noth` it looks normal. There's nothing wrong. It's kicking, it's moving, wriggling about, crying. It's weird. It's worked too hard. It's been two weeks, and it's come too far to give up. So like you, if` You know, like everybody ` you fight for something that much and you want it, you don't give up. So I ain't gonna give up for no one. I'll make sure of that one. I'll make sure of that one. CHILD SHOUTS CHILD YELLS Clinical decisions for these babies are some of the most complex in medicine. The risks so great, the technology so new, the recurring question ` do these babies have human rights or should they be treated as foetuses, unviable at such an age? The bible for doctors and parents facing these dilemmas was published by the Nuffield Council for Bioethics four years ago. But the guidelines have limits, because each of these patients is so different. Nobody can tell which baby is so underdeveloped that they have a fatal flaw in their gut, heart or brain, or which will struggle on. So the lives of these babies are ruled by heart-breaking uncertainty. This is Matilda, another 23-week baby. She was born four days ago, the survivor of twins, and weighs only a pound. Like many of these babies, her skin is thin and gelatinous and bruises at the slightest touch. They sort of said to us, 'For the first week, it's touch and go, and we'll see how she responds.' Um, and then each day we'd come in and they'd say, 'Oh, she's been really stable and she's doing OK.' And then you don't want to get your hopes up. And then every time you sit here and the alarms go off, you're, like... And then it stops, and then it restabilises, so... We just have to trust in what the professionals are going to tell us about how much trauma, if any, Matilda is suffering. And... And how we then go on to deal with it, really, and... I just` I just feel really a little bit unlucky. I want to try and pretend it's not happening. Craig and Lucy, both police officers, have a meeting with the doctor to discuss Matilda's prognosis. It would help me a lot if you could just tell me where you are based on what people have told you, what you understand Matilda's problems are and, you know, where you're... < We just appreciate that she's obviously very poorly. < We just appreciate that she's obviously very poorly. < Yes. < And each day that` If she's stable, does that give her a chance to get a bit stronger? Yeah, I think that's what we don't really understand is is she getting stronger or is she just teetering along? And I think that's why we're nervous about giving you any 'this is what we do' or 'this is what we don't want'. Now, I don't know how Matilda is going to be, but I think there is still some hope. I think the odds are stacked against her, and, you know, I think that we may be in for stormy times ahead. Uh, I don't think` And I don't think we're in a situation where it's clear that we can't help her any more. Do you see what I mean? There are still options that we have. And that's not to say that we'll keep going on and on and on and on. And what I don't want is to put her through suffering, discomfort to get a baby at the end of the day who's alive at any costs. Yeah. Yeah. < That's not why we're here. That's how we feel. That's how we feel. That's something we said we don't want. If she was to go down the deterioration side, then we appreciate that she has to have a quality of life. < Yes. < Yes. And, like, the chronic lung disease or the lungs are not developed, then we'd probably go down the route of just letting nature take its course. If she were to deteriorate to such a point where we needed to do the` the resus` the CPR, resuscitation, and then we wouldn't institute that, because it's... You know, it's not what you want, and it's` it's` it's inappropriate in the circumstances. If she's so poorly that she needs that degree of, you know, resuscitation, then it's not` not meant to be, I think. I suspect things will become clearer as time goes on. < It's a kind of partnership. You know, we're looking` We want what's best for her. We all do. < And, you know, obviously we've got the expertise, and you've got` she's your` she's your baby. Breaks your heart, doesn't it? Intervention is the immediate issue, but there's another constant concern which in turn can be another drain on the state. We'll see you in a moment. For 23-weekers, there's another on-going concern ` even if they survive, they face the potential of being permanent disabled. Life-saving treatments themselves increase the risk. Plastic tubes for breathing can cause chronic lung disease. Drugs to accelerate development can cause cerebral palsy. And medicine to heal the heart can cause a little gut to collapse. So the consequences of decisions made now could have consequences for life, like they were for Heather Rutherford. GENTLE MUSIC Katherine Rutherford is a nurse practitioner on the neonatal unit. 23-week babies ` if they survive, which few will ` the majority are going to be disabled in some way, and quite severely. Her experience runs deeper than merely professional. POIGNANT MUSIC 21 years ago, her daughter Heather was born at what was then the very limit of viability ` 26 weeks' gestation. All I can use out of my four limbs is my left arm. I'm not able to get myself anything to eat, anything to drink, get to the loo and to the phone. Basically, if the carers don't come, I'm stuck in bed. Hello? Morning, Heather. > Morning, Heather. > Morning. As an adult, Heather has no routine help from the NHS. But the local authority provides carers to help her up in the morning. The strap broke on the other one. You ready? You ready? Yeah. You ready? Yeah. Ready? One, two, three and... Heather is struggling with her transition to adulthood after a happy school life and good A-level results. Earlier this year, she sank into depression. I had six months of counselling. I was crying every single night. I-I just didn't know where to turn, what to do. Horrible things were going through my head. So I just wished I could end my life, really. Like other parents of very premature babies, Katherine made decisions at the beginning of Heather's life. They still pray on her mind. I don't think we've actually sat down and said, 'Was it the right decision?' cos I don't think any of us want to know... (CHUCKLES) what the other person thinks. No, cos I think I'd be devastated if she thought I'd made the wrong decision. the same as she'd be devastated if she thought I'd made the wrong decision. I haven't got a clue who she is... (SPEAKS INDISTINCTLY) But I don't think at that point in time you have any understanding of what people are telling you, cos you just see a baby in front of you,... because suddenly you have a child, so you want that child to survive. The other thing that massively, massively, massively scares me is when my parents go. I'm so, so scared, cos I rely on them so much. I really do. As each year goes by, I get more and more scared, to be honest. I'm` I don't look forward to growing up at all. I really don't. After Heather's birth, Katherine trained to become a nurse and chose to work on the neonatal unit. She's in a unique position to counsel parents. < When you're advising the parent of a 23-week patient, what would you...? < What do you try and explain to them? Try and` Try and explain what the problems are and what the outcomes are likely to be, but being a parent, you generally hear what you want to hear, so if somebody tells you the 5% chance and the 95% chance, you're gonna cling to the 5% because somebody's told you that. That's what you want to hear. I think that is generally what happens. The numbers are stark. Only nine out of 100 23-weekers will survive hospital. Of those, six will be severely or moderately disabled and only one will live a fully able-bodied life. Of course, every parent hopes that their child will be that one in 100. Mike and Ursula have two daughters, one of whom was born in the 23rd week. This is a nappy which was really big. < How big were you compared to that nappy? < How big were you compared to that nappy? Don't know. Probably like that. I got a` a phone call saying that the baby was being born. They were talking about saving the mother's life and the baby had no chance. This was way too big for me. And drove down expecting to arrive to a dead baby. Again, this was way too big for me. She was only 23 weeks, and her chances of survival were very tiny. We named her Molly that night. It was too early in the pregnancy. We hadn't agreed on a name, but we named her Molly and she survived the first night and carried on surviving by the skin of her teeth. It is strange to think that that was me. So, huge amounts of medical intervention early on, obviously. I can't count the number of transfusions she had. Ooh, well done. > We had frequent setbacks where her` the potential for her quality of life to be pretty poor was great. Someone needs to go on the other` go there. I can't imagine making a decision at a delivery ` 'What do we do?' Cos you just don't know. Nobody` Nobody would say, 'Well, you know, Molly shouldn't have been resuscitated.' Nobody, obviously. But none of us knew how well she was going to be. She's full of life, full of beans, full of fun, little monkey. Happy. Loves life. Molly's survival hasn't come without cost. Today she only has one kidney, her epilepsy's controlled by drugs and the lack of strength in one side of her body means she needs weekly physiotherapy. Her parents, who are both doctors, have invested considerable time and money in helping her lead a normal life. It costs, I suppose, the same as private physio would. It's �30 a session. And in that sense, it's worth every penny, and we're just lucky we can afford it. Obviously, lots of people couldn't. As even the most active 23-weekers require support throughout their lives, how are we as a society looking after their needs? Dr Anne Aukett is a paediatric consultant in Birmingham who cares for disabled children, including the survivors of premature birth. Is there anything else that you're worried about that we need to discuss? Just when she gets breathless, really. I wanted to make sure she's all right, or do I need to be using the inhaler more or...? < And are you able to give the care that these kids need? < And are you able to give the care that these kids need? 'No' is the very easy answer. There may have been increased investment in the NHS over the last few years, and a lot of that has gone into neonatal intensive care, but there's been very little investment in community services for disabled children. Heather suffers from the effects of these priorities. Since turning 18, she no longer receives the plethora of NHS services that were provided to her as a child. AS you get older, your disability affects you a hell of a lot more. Hell of a lot more. How can you go from doctors to social workers to physiotherapist to, uh, consultants to absolutely nothing? I-I just don't understand it. I think it's very selfish to keep the baby alive and say, 'Oh yes, we've done our bit for society. 'That baby's alive and it's going to have a wonderful life.' But that's not always true. You know, that baby could think, 'Oh, I'm alive, but what do I do now? 'What's my purpose now?' You know? 'Oh, we kept you alive, but now you cost us too much money, so we're not gonna bother.' I'm sorry, but if you're willing to support someone at the beginning of life, you should be willing to support them to the end. Matilda is now 28 days old. She's struggling because a tube in her heart which would normally close at full-term birth has remained open. Craig and Lucy must now decide whether their tiny baby should undergo heart surgery. I can't really get my head around how they've managed to keep her alive, and so I suppose that proves, really, in a way, that babies can survive that tiny, and... I don't know, really ` that she's given her bit and so, you know, do we` you know, do we give her a bit back for what she's given us, really? We need to make a cut on the side, and we actually go between the rib spaces. Right, OK. Right, OK. It will be on the left-hand side. And that lets us get into where the lungs are. Right. Right. We have to move the lung forward, OK? Then we're going to get down to where the duct is. Then we're going to get down to where the duct is. Yep. Any questions about that so far? Any questions about that so far? No. Any questions about that so far? No. No. Now, there is a risk, OK. And there is a risk of her not surviving an operation like this. And there is a risk of her not surviving an operation like this. Yeah, I think we know that. We've gone along throughout the whole sort of four weeks, so we're aware of risks. Sign there. If the other person wants to, they can always sign that space there, OK? (SPEAKS INDISTINCTLY) All right, there we are. All right, there we are. Thank you. OK? OK? OK. Thank you very much. OK? OK. Thank you very much. All right. When we were signing that consent form, it said 'reasons for surgery,' and it just said 'life-saving'. The way that they put it to us is if this works, then everything else can cascade with this. So it can be a case of all her problems could all improve... So it can be a case of all her problems could all improve... Fingers crossed. ...as a result of this duct. So we keep our fingers crossed. SOMBRE MUSIC OK, so a glimmer of hope for Matilda. Will she get to be one in a hundred ` the 23-weeker that gets to go home? That's a big one, Matilda. Well, she's done the hugest poo for her. Yeah, good news is good news, but don't get too excited because things can change. She's doing her best, and that's all you can wish for, really. Um, I'm told the parents are on the way. She still feels warm. But I don't know how long she'll stay like this. It's been going on about 18 minutes now. Which is generally not a good sign once you've gone more than 10 minutes. I think you should stop. I think you should stop. 20 minutes and it's done. It's a sure sign that that is... (SPEAKS INDISTINCTLY) I think we've reached the end of the line, really, with all that adrenalin. Given the circumstances with this baby, it's appropriate now to just stop resuscitating after 20 minutes. We can't just keep her heart rate going for this length of time without... without a good reason. I feel like we've, to be honest, got this baby further along than I ever would have anticipated given her circumstances. After weeks of treatment, Simone becomes one of the overwhelming majority of these babies who don't go home. As we spend more and more money in intensive care, it's outside the hospital where the real problem lies. You're much more likely to give birth to a child in extreme prematurity if you live in poverty. The more prosperous the part of the country, the lower the rate of prematurity in the babies born. You only have to look around the neonatal unit and you can see it is the more disadvantaged families that end up the majority. We know that we have more premature babies than other countries in western Europe whose financial circumstances are not particularly better than ours. That's where we need to put our money. < In preventing...? < In preventing...? In preventing premature birth if we possibly can, yes. Matilda has survived her operation and now stands a very good chance of going home. If she does well and gets a bit stronger, we could be another three months in, but... So you've gotta be in it for the long-haul, really. We are now in a position where Matilda is with us for the long run, really. and before when she was very very poorly, if they told us then that there'd been some really bad brain damage, I suppose we would have been in a position where we could have sat down and said, 'Do we want to continue keeping her alive?' And we don't have that option any more. Can you lift your legs there? That's a big one, Matilda. Well, she's done the hugest poo for her, but I'm getting through. Shall we clean your bum one last time? Yeah? I know you don't like it, but you've gotta clean it, OK? Good girl. If you get your hopes up too much, you'll end up just getting knocked down, so you'd rather just keep it` keep it level, um, and then, yeah, good news is good news, but don't get too excited, because things can change. I mean, she's just... She's at the stage where she's doing her best, and that's all you can wish for, really. It's fantastic to see Matilda doing so well. But in the six months I spent on the ward, she's the only 23-weeker I've seen survive. And that means that much of the treatment provided to these babies by the highly skilled and dedicated doctors and nurses has been in vain. It's 139 days after Matilda's birth. So she's coming home today in about an hour. Um, and fingers crossed we won't have to spend very much more time in hospital. Although who knows? We've already been warned that she might have to sort of come back in if she picks up a cold or anything like that, so we are prepared for coming back into hospital. She'll be five months old tomorrow, her actual birth date. She will be... four weeks old from her due date tomorrow. So it is a little bit like we've just had a baby. She's 7 pounds today, so she's gone from 1 pound 1 born to 7 pounds in five months. So, yeah, she's come a long way in five months. It'll be a while before they discover whether Matilda's prematurity has lasting consequences. I spoke to a physiotherapist this morning who said it's not really until they're 2 that you can start to judge whether things are right or not, so, you know, we've got at least another 18 months to sort of get through and, you know, hopefully she'll be OK. What's happened has happened now, and we will have to deal with it, you know. And we will. Oh, sorry, poppet. Matilda's survival is due partly to being born healthier than others. She also demonstrates the brilliance of more than �100,000 worth of modern medicine. But is it right to treat babies like Matilda? It's a question that divides many doctors and parents. Well, I think we should change in terms of looking at what we do in that very early 23-week gestation period and have a hard look at the outcomes from that group and make a decision on that. Just as the same way that we've made hard decisions around things like cancer drugs and saying, 'The outcomes are not good enough to use that. Therefore we won't spend that money.' I certainly fear that with the financial situation it is, you just can't go on giving people necessarily what they want. The other thing is what does their baby want? And there's a lot of emphasis put on the parents and the parents' views and what they want. Um, but somewhere in there, there needs to be an advocate for the baby. They're making me go this difficult route. Not to save life in case some of them are disabled is` is a political statement of a euthanasia that isn't really acceptable in the general mores of our society. We're not keen to put people to sleep just because they're disabled, which is essentially what they're doing. I'm not saying that every effort should be made for every child once futility has been reached. I'm saying, really, that the sort of 23-week-year-old ` someone like Molly ` should be given every chance. LAUGHTER LAUGHTER See you later. Bye-bye. (SIGHS) What is the worst? That somebody can't speak? That somebody can't walk? That somebody can't see? 'Sometimes I think, "Don't be ungrateful." Some people don't even have that. 'Some people don't take their babies home.' First time out, really. First time out, really. Yeah. Wow. She don't look to be that bothered about it. She don't look to be that bothered about it. (CHUCKLES) No. She's, like, 'Whatever.' Matilda is a miracle, and nobody's suggesting that she shouldn't be with us today. But I do think we need to make some tough choices. The first priority for the NHS should be prevention. Britain could avoid so much of this suffering if we could reduce our premature birth rate to that of other European countries. Next, we should shift the balance for these decisions back on to doctors, away from the stricken parents. And we must provide life-long care to those premature babies who survive but with disabilities. Ultimately, though, I would understand if the NHS adopted the Dutch position and stopped saving 23-weekers. Certainly, I think that resuscitation should be the exception rather than the rule. Not resuscitating at birth is, in my opinion, not the same as killing. Cos it's only intensive medical attention that's keeping these babies alive. But I realise such a shift in policy would make many people deeply uncomfortable. I would say it's unique in terms of no-going area. I mean, like, totally no-going area. I mean, if I came out and said, 'I'm going to stop resuscitating babies at 24` below 24 weeks,' there would be a witch hunt. Do you want to go in the car? We're going home now. Guess what? No, we're not home. We're in the car on the way home. I know. She's holding my hand. (LAUGHS) I know. Don't cry. No, she's fast asleep. She hasn't woke up for about three hours. She's slept through the whole thing. It's a yellow car. (LAUGHS) It's a yellow car. Going in? Go and see your baby. Go and find your baby. In NZ, the threshold for active treatment is 24 weeks and 23-week babies are dealt with on a case-by-case basis. Now, if you haven't gone through this, you cannot pretend to even understand or know what parents and families go through when with these decisions, but our hearts do out to you if this is what you're going through or, uh, have already gone through. Well, coming up next week ` how well prepared are our emergency services for a major earthquake? Yeah, people are doing everything to save you. Alex Cvetanov has finally got through to his wife, Tamara. Are you in the classroom? She's still trapped under the rubble nine hours after the CTV collapse. Is she alive? Is she alive? Yes. Is she alive? Yes. Another five people are there. Dr Cvetanova is talking to her husband and to police emergency. Had they had concrete cutters at that stage, could they have used them to save Tamara? She was alive, so why wasn't she rescued? She's dying and you can't help. Why did Tamara and four others die so long after the earthquake? Who do you think was in charge at that stage? > I asked USAR members, police, firefighters. We don't know and the answer will be this... They'd trained for years for our first national emergency. What went wrong? The chain of command was sadly lacking. We just weren't prepared. Some of those deaths did not necessarily have to occur. Lessons can be learned. What lessons? The royal commission can't investigate ` the government won't let it ` but Sunday can. The truth will find a way of coming out, and it can come out painfully, or it can come out willingly and gracefully. An absolutely fascinating story. That's our show next week, but that is it for tonight. Check us out on Facebook ` Sunday TVNZ.