0:00:02 > 0:00:06Hello, little man. Oh, you are awake. That's good.
0:00:09 > 0:00:11Great Ormond Street Children's Hospital, London.
0:00:13 > 0:00:18Each year, its doctors treat thousands of critically ill children from across the country.
0:00:21 > 0:00:23For us, the happy bits are the children who come in
0:00:23 > 0:00:27and need all of our skill and expertise all at once
0:00:27 > 0:00:29in a big rush and we manage to get them through.
0:00:31 > 0:00:34Modern technology means that most children will spend
0:00:34 > 0:00:35just a short time here.
0:00:37 > 0:00:39But a small minority become
0:00:39 > 0:00:42dependent on medical science to keep them alive.
0:00:43 > 0:00:47It's a delicate balance between what we can do
0:00:47 > 0:00:50and what we should do, ought to do, the ethics of what we're doing.
0:00:51 > 0:00:55When medicine can do so much, parents and doctors
0:00:55 > 0:00:58face difficult decisions about how far to push treatment.
0:00:58 > 0:01:03It then puts me in a situation, of having a very, very sick girl
0:01:03 > 0:01:06that I'm having to do an awful lot to pull her through
0:01:06 > 0:01:08and whether that's the right thing to do.
0:01:09 > 0:01:14Medicine is advancing and it does extend the possibility of life
0:01:14 > 0:01:18and the dilemma and the challenge comes to recognise
0:01:18 > 0:01:21when it isn't going to work and when...when it's time to stop.
0:01:35 > 0:01:36BEEPING
0:01:40 > 0:01:43Maisie Harris was born nearly a year ago
0:01:43 > 0:01:46and has never left Great Ormond Street Hospital.
0:01:50 > 0:01:54She has an incredibly rare condition called Ondine's Curse.
0:01:54 > 0:01:57When she goes to sleep, her brain doesn't tell her to breathe.
0:01:57 > 0:02:00A machine called a ventilator breathes for her.
0:02:00 > 0:02:03Maisie also has another rare condition
0:02:03 > 0:02:08known as tracheomalacia, which makes her windpipe and airways very weak.
0:02:11 > 0:02:15Doctors had hoped she would be able to go home with a ventilator.
0:02:15 > 0:02:18Recently, Maisie has been having episodes where her airways
0:02:18 > 0:02:21completely collapse and she has to be rushed to intensive care.
0:02:24 > 0:02:26It's a real dilemma, I mean,
0:02:26 > 0:02:29Maisie's clearly quite a sentient young girl
0:02:29 > 0:02:31and will be, you know,
0:02:31 > 0:02:35a normal, interactive, developmental child who will run and walk
0:02:35 > 0:02:39and do all sorts of normal things that normal children do.
0:02:39 > 0:02:42But she won't do it without a ventilator
0:02:42 > 0:02:46and to get her to the stage where she may be normal
0:02:46 > 0:02:49and off a ventilator during the day time, may take two years.
0:02:55 > 0:03:00Maisie's airways are so weak that she needs powerful ventilation
0:03:00 > 0:03:03which risks damaging her lungs.
0:03:10 > 0:03:14The doctors are concerned her complicated condition might never improve.
0:03:16 > 0:03:19Now, you know Dr Kilner, and I'm Dr Petros,
0:03:19 > 0:03:21one of the consultants on the intensive care unit,
0:03:21 > 0:03:24and the reason we're meeting is to give you an update.
0:03:24 > 0:03:26So, since Maisie's been on Miffy ward
0:03:26 > 0:03:29she's had a number of events where she's deteriorated.
0:03:31 > 0:03:35And needed bagging and she's needed to come back to, to ITU.
0:03:35 > 0:03:37And initially we weren't, we weren't
0:03:37 > 0:03:39sure why, why that was,
0:03:39 > 0:03:41but more recently we,
0:03:41 > 0:03:43we did further investigations to try
0:03:43 > 0:03:46and find the cause, and we found that she,
0:03:46 > 0:03:51unfortunately, has very floppy airways, which are quite compressed.
0:03:52 > 0:03:55The tubes in her lungs are tiny.
0:03:55 > 0:03:58They should be like straws, yeah, like firm straws,
0:03:58 > 0:04:02but they're like the top of a balloon, they collapse down, you know when you blow up a balloon.
0:04:02 > 0:04:05- Yes.- And she can't get the air in and out.
0:04:05 > 0:04:09The difficulty now, the treatment of the floppy airways is...
0:04:09 > 0:04:11can be quite challenging.
0:04:12 > 0:04:17Would it be hoped that gradually her airways would get stronger?
0:04:17 > 0:04:19Yeah, they may not get stronger
0:04:19 > 0:04:23but they may get a little bit bigger as she gets older,
0:04:23 > 0:04:26but the problem is that, you know it may not be in time, you know,
0:04:26 > 0:04:31the airways may not grow in time before something serious happens.
0:04:31 > 0:04:35The worry that we have, is that the pressures that we have to
0:04:35 > 0:04:40keep using, and that she keeps coming back to intensive care, suggests that
0:04:40 > 0:04:44the straws aren't growing.
0:04:44 > 0:04:47And also, intensive care is a dangerous place,
0:04:47 > 0:04:51and if the tubes block or something happens, something sad might happen.
0:04:54 > 0:04:57- Yes.- Is that heavy news for you, I'm afraid?
0:04:57 > 0:05:01- Yeah, but it's got to be said though, so.- You need to know.- Yeah. - And be aware of.
0:05:05 > 0:05:09I think it's important that people know the total picture
0:05:09 > 0:05:11from our perspective.
0:05:11 > 0:05:14We see children who do die with these things, so perhaps we're
0:05:14 > 0:05:16a little more cynical, or realistic, I don't know.
0:05:16 > 0:05:19But if I were a parent - well, I am a parent -
0:05:19 > 0:05:21but if I were a parent with this particular condition,
0:05:21 > 0:05:25I would want to know that this was a really outside possibility,
0:05:25 > 0:05:29because nobody can turn round and say to me, "Well, you never told us."
0:05:32 > 0:05:36This is her normal one, and this is our PIC ventilator.
0:05:36 > 0:05:39If we take this one with her, then she won't have to come back here any more.
0:05:42 > 0:05:46Maisie's mother, Rachel, was also born with Ondine's Curse
0:05:46 > 0:05:48and still uses a ventilator at night.
0:06:21 > 0:06:25Maisie's other condition, tracheomalacia, complicates things
0:06:25 > 0:06:29further and doctors don't know if they will ever get her home.
0:06:31 > 0:06:36It would have been wonderful if, if Maisie had been born fine,
0:06:36 > 0:06:41that would have been lovely, but everyone was worried,
0:06:41 > 0:06:44obviously, when Rachel was pregnant.
0:06:44 > 0:06:46I knew she would have it,
0:06:46 > 0:06:51they said she would have 50-50 chance to have it, but I knew anyway,
0:06:51 > 0:06:54cos I carry, I carry the gene so it was a bit obvious she would have it.
0:06:56 > 0:06:57It didn't bother me at all.
0:07:00 > 0:07:04- Unfortunately Maisie's had... - More wrong.- Bit of a harder time.
0:07:04 > 0:07:07Maisie's had more wrong than Rachel.
0:07:10 > 0:07:13When you look at her at the moment, she's such a normal baby
0:07:13 > 0:07:17and she's so chubby in her legs, and you know,
0:07:17 > 0:07:19ain't she, you know?
0:07:21 > 0:07:23And, of course, it's inside her.
0:07:34 > 0:07:37Maisie's multiple problems mean she needs intensive care
0:07:37 > 0:07:40more and more, with no end in sight.
0:07:40 > 0:07:43The team must ask whether it is right to continue.
0:07:45 > 0:07:47In a few weeks she turns one,
0:07:47 > 0:07:51so we've been fighting a losing battle now for a long time.
0:07:52 > 0:07:56Maisie has never been out of this hospital, ever.
0:07:58 > 0:07:59And she's nearly one.
0:07:59 > 0:08:03So, yeah, to you and I she looks like she is
0:08:03 > 0:08:07batting about, but how many years do we keep her like this for,
0:08:07 > 0:08:11in a cot, in a chair attached to a ventilator, it's not really
0:08:11 > 0:08:16a quality of life, you know, and, and that's what has to be balanced.
0:08:16 > 0:08:19She's practically lived here for a year.
0:08:20 > 0:08:24We've made some transitions during that time, but if we can't get
0:08:24 > 0:08:27her off that ventilator, then,
0:08:27 > 0:08:30she's just living in this room,
0:08:30 > 0:08:34day and night, day and night, day and night, and it will never end.
0:08:35 > 0:08:37It's no quality of life.
0:08:47 > 0:08:51A few days later, Maisie seems to have made some improvement
0:08:51 > 0:08:54and doctors have decided to move her from intensive care to Badger,
0:08:54 > 0:08:56the respiratory ward.
0:08:56 > 0:09:00That's it. Maisie, are you ready to go? High five.
0:09:00 > 0:09:02Let's get out of here.
0:09:04 > 0:09:05Right.
0:09:05 > 0:09:07I give you the multi one, what else?
0:09:07 > 0:09:10All right.
0:09:15 > 0:09:17She's only just arrived.
0:09:17 > 0:09:21The situation has been over the weekend, she's been pretty stable.
0:09:21 > 0:09:23However, she's on very high pressures.
0:09:23 > 0:09:27Unfortunately, the more we keep going with these high pressures,
0:09:27 > 0:09:29the more damage we're going to do to each lung,
0:09:29 > 0:09:33so we're in a very tricky position here.
0:09:33 > 0:09:35They have been, in intensive care,
0:09:35 > 0:09:38very reluctant to reduce her pressures because
0:09:38 > 0:09:39they don't want her to crumble,
0:09:39 > 0:09:42because they want to move her across here,
0:09:42 > 0:09:46so they, not unreasonably, have maintained current settings.
0:09:46 > 0:09:52She, when I saw her, looked very good, in fact, best I've seen her
0:09:52 > 0:09:56for a long time, but we know that she is very vulnerable.
0:09:56 > 0:10:00No-one else in the hospital, I think, is on this ventilator.
0:10:00 > 0:10:02Her spare vent is broken
0:10:02 > 0:10:04and so is been sent downstairs for a repair,
0:10:04 > 0:10:08so if, if any of her equipment goes wrong we don't have a lot of leeway.
0:10:08 > 0:10:11If anything happens in the immediate future,
0:10:11 > 0:10:15then she's going to have to be, we're going to have to maintain her up here with...
0:10:15 > 0:10:16Bag her until she goes back.
0:10:16 > 0:10:19Yeah, but I think we're going to have to manually use like
0:10:19 > 0:10:24the air's tepees and bag her and then bring her back downstairs as soon as we can.
0:10:25 > 0:10:27My personal opinion is,
0:10:27 > 0:10:32if she deteriorates on those settings then she needs to go back to PICU.
0:10:33 > 0:10:36For the, to switch onto their ventilators.
0:10:40 > 0:10:41What are you going to do?
0:10:41 > 0:10:45We have a tracheostomy tube in now that has a cuff.
0:10:45 > 0:10:50- I don't think you ever had a cuffed tube, did you? - No.- You just had a normal one.
0:10:50 > 0:10:52Respiratory consultant Colin Wallis
0:10:52 > 0:10:55looked after Maisie's mother, Rachel, when she was young,
0:10:55 > 0:10:59but he's finding Maisie's case far more difficult.
0:10:59 > 0:11:00There you go.
0:11:00 > 0:11:04He's increasingly concerned that Maisie may never get home.
0:11:10 > 0:11:14At the moment, we are at the absolute maximum
0:11:14 > 0:11:15of our technological expertise.
0:11:15 > 0:11:17We have nowhere else to go.
0:11:17 > 0:11:21Maisie is now 100% reliable on technology to stay alive.
0:11:23 > 0:11:28We are now down to having invested so much in one child,
0:11:28 > 0:11:30we've got to keep going.
0:11:30 > 0:11:32We're not in a position where we can do anything else,
0:11:32 > 0:11:35but with a very uncertain outcome.
0:11:50 > 0:11:52Intensive care sees many children
0:11:52 > 0:11:54with long and complex medical histories,
0:11:54 > 0:11:56who arrive in critical condition.
0:11:58 > 0:12:01Millie Staplehurst is a four-year-old girl
0:12:01 > 0:12:04who's had severe medical problems since birth.
0:12:04 > 0:12:08This morning, she arrived suffering from septic shock
0:12:08 > 0:12:09and multi-organ failure.
0:12:13 > 0:12:17Millie Staplehurst, early morning admission.
0:12:17 > 0:12:24She had liver and small bowel and pancreatic implant in November 2008
0:12:24 > 0:12:30and she had a rejection of the liver transplant in 2009.
0:12:30 > 0:12:31On top of that she had, er,
0:12:31 > 0:12:40multiple brain abscess, that was in April of 2011, so too many issues.
0:12:40 > 0:12:43Ventilator requirement was quite significant,
0:12:43 > 0:12:47pressures of 34 over ten, 100% oxygen with
0:12:47 > 0:12:50the sats of 85 for the transport.
0:12:50 > 0:12:53We need to ultrasound this belly.
0:12:53 > 0:12:56We need to know if there's anything from a transplant point of view
0:12:56 > 0:12:57that we need to do.
0:12:57 > 0:13:01It sounds like she's had quite a lot going on in her head.
0:13:01 > 0:13:05- OK.- So...
0:13:05 > 0:13:07- Do we have a head scan, CAT scan? - No, it's not there.
0:13:07 > 0:13:10She's literally come in the front door.
0:13:13 > 0:13:16Millie was born with a condition where her bowel was unable to absorb
0:13:16 > 0:13:18the food needed to survive.
0:13:18 > 0:13:21And this tube's been in for a while, has it?
0:13:23 > 0:13:25She's had several major surgeries
0:13:25 > 0:13:27and has spent most of her life in hospital.
0:13:27 > 0:13:28That's the second tube
0:13:28 > 0:13:30she's had in, she's had that in for quite a while.
0:13:30 > 0:13:32When was it last changed?
0:13:32 > 0:13:34Similar time to when she had her central line,
0:13:34 > 0:13:35probably about four months ago.
0:13:37 > 0:13:41Three years ago, she had a liver, small bowel and pancreas transplant.
0:13:41 > 0:13:46- Since then, she's had major complications.- Hmm, it degrades.
0:13:46 > 0:13:48She's here because of septic shock, hmm,
0:13:48 > 0:13:53an infection that's causing shock and causing all her organs to fail.
0:13:54 > 0:13:55The most important thing is
0:13:55 > 0:13:57to identify the source of the infection.
0:13:57 > 0:14:01The difficulty is we may not find the source and because
0:14:01 > 0:14:05of the bacterial infection sometimes you get a lot of release of chemicals
0:14:05 > 0:14:09in the body and that has already, that cascade has already started.
0:14:09 > 0:14:11So, even if you treat the infections,
0:14:11 > 0:14:14sometimes you can't stop that, um, snowball effect.
0:14:14 > 0:14:18So far, she's on a lot of support
0:14:18 > 0:14:22and there's very little evidence that she's picking up yet.
0:14:26 > 0:14:30The intensive care team are struggling to control Millie's infection.
0:14:30 > 0:14:33Consultant Paula Lister is concerned that there may be
0:14:33 > 0:14:37further problems associated with her transplants.
0:14:38 > 0:14:40Paula is trying to establish
0:14:40 > 0:14:43whether there is any point in putting her through intensive treatment
0:14:43 > 0:14:46if it isn't going to give her a real chance of survival.
0:14:47 > 0:14:49Hi, thanks very much for calling back.
0:14:49 > 0:14:53I'm one of the PICU consultants, and Millie was transferred to us,
0:14:53 > 0:14:58this morning at about 7.00, 7.30am.
0:14:58 > 0:15:02I didn't really have a feel for where, where we were,
0:15:02 > 0:15:04in terms of her difficult, complex history,
0:15:04 > 0:15:07and the fact that she's out of short-cuts,
0:15:07 > 0:15:08and she may need to have a re-transplant,
0:15:08 > 0:15:11but can't be re-transplanted because of her cardiac problems,
0:15:11 > 0:15:14which can't be fixed. Is that, am I right, or..?
0:15:14 > 0:15:15It's just that, you know,
0:15:15 > 0:15:18I've got my back against the wall here and,
0:15:18 > 0:15:20it would just be nice to know...
0:15:20 > 0:15:23I'm just trying to get a whole picture of what's been going on
0:15:23 > 0:15:25with this girl, and I'm getting,
0:15:25 > 0:15:28just trying to find all the information out.
0:15:28 > 0:15:31She's tremendously sick, on a huge amount of support.
0:15:34 > 0:15:38Does, is that his mobile?
0:15:38 > 0:15:40Hi, this is Paula Lister on PICU.
0:15:40 > 0:15:43Could you please give me a ring about, our patient,
0:15:43 > 0:15:44Millie Staplehurst?
0:15:46 > 0:15:48But if, if her history is very complicated
0:15:48 > 0:15:52and they had actually been thinking about moving towards palliation,
0:15:52 > 0:15:58then I don't want to be pushing this and putting her through an awful lot,
0:15:58 > 0:16:01if that's not in her best interests to do.
0:16:01 > 0:16:04March, OK.
0:16:07 > 0:16:10Hiya. I'm Doctor Mok. I'm one of the ICU consultants.
0:16:10 > 0:16:15I've explained to Mum earlier, and I just wanted to come and update you
0:16:15 > 0:16:17about what's happening with Millie.
0:16:17 > 0:16:20What do you understand so far to be her problems?
0:16:20 > 0:16:26She's septic, having an infection inside, and a bleed line
0:16:26 > 0:16:28and obviously it doesn't help when
0:16:28 > 0:16:31she's had so many different problems, really.
0:16:31 > 0:16:33You've hit the nail on the head. Er, at the moment,
0:16:33 > 0:16:37she's really quite sick, she's on our most powerful ventilator,
0:16:37 > 0:16:39and we may also need to support her heart,
0:16:39 > 0:16:43so, quite a lot of organs are not working very well at the moment
0:16:43 > 0:16:45and needing a lot of support.
0:16:45 > 0:16:50At this stage, it's really difficult to know which way she's going to go.
0:16:50 > 0:16:52We obviously want to take the line out,
0:16:52 > 0:16:55because if that's the source of the infection, until you take it out
0:16:55 > 0:16:57she's not going to get better.
0:16:57 > 0:17:00- Her oxygen level was quite low as well, still?- Yes, yes.
0:17:00 > 0:17:04- Yeah.- You've been through quite a lot with her haven't you?
0:17:04 > 0:17:07- Yeah.- Yeah.
0:17:07 > 0:17:11She's a fighter though. So hopefully she'll be OK.
0:17:14 > 0:17:17We are talking about life and death in this child.
0:17:17 > 0:17:20I've now been about two hours on the phone,
0:17:20 > 0:17:23and we're potentially talking about
0:17:23 > 0:17:25withholding treatments from her
0:17:25 > 0:17:27because it is not in her interests to do them.
0:17:27 > 0:17:30My understanding is that there was some discussion about
0:17:30 > 0:17:33possibly going towards palliation,
0:17:33 > 0:17:37and I just wanted to try and clarify that before we pushed this hard.
0:17:39 > 0:17:45Brilliant. Thank you very much. Thanks a lot. Bye.
0:17:45 > 0:17:48Mitral valve needs replacing.
0:17:48 > 0:17:51They're worried that she might need a long term anticoagulation,
0:17:51 > 0:17:55she's had two previous haemorrhages, she's still got aspergillosis,
0:17:55 > 0:17:58so she's going to need another liver, bowel transplant.
0:17:58 > 0:18:01They were talking about heading towards palliation,
0:18:01 > 0:18:03but hadn't talked about that to the parents.
0:18:03 > 0:18:06I don't think she'll manage to get onto the filter,
0:18:06 > 0:18:09so I put a DNR on. They're going to get the line out now,
0:18:09 > 0:18:11and we'll see where we are in a few hours.
0:18:17 > 0:18:20Probably the best thing is for you to tell me
0:18:20 > 0:18:23what you understand, and then I can fill in the detail around it,
0:18:23 > 0:18:27because then I know what you understand and what you know.
0:18:27 > 0:18:32Well, that she's on the oscillator, but it doesn't seem to doing,
0:18:32 > 0:18:34she's on 100% oxygen,
0:18:34 > 0:18:37and it's not, her sats are still sitting at low eighties,
0:18:37 > 0:18:39and that her blood pressure is low,
0:18:39 > 0:18:42and I remember you saying that, the other lady said,
0:18:42 > 0:18:45or he said about putting her on the other machine that pumps the blood
0:18:45 > 0:18:47around your body, or something.
0:18:49 > 0:18:54She's certainly had a very complex and complicated history,
0:18:54 > 0:18:58and from her intestine and liver point of view,
0:18:58 > 0:19:04they seem to be thinking that she's going to need to be re-transplanted,
0:19:04 > 0:19:10and that her current situation can't go on.
0:19:10 > 0:19:12There are a lot of complications with that,
0:19:12 > 0:19:16and what the team hadn't said to you, but they've said to me on the phone,
0:19:16 > 0:19:18is that they are, they have been wondering whether
0:19:18 > 0:19:21all of these things added up together,
0:19:21 > 0:19:26puts her in a position where actually she may not be transplanted.
0:19:26 > 0:19:31Because her heart won't take it, and her brain won't take it,
0:19:31 > 0:19:35which then puts me in a situation of having a very, very sick girl
0:19:35 > 0:19:38that I'm having to do an awful lot to, to pull her through,
0:19:38 > 0:19:42and whether that's the right thing to do in consideration
0:19:42 > 0:19:44of everything else that's been going on.
0:19:46 > 0:19:50I'm not sure that we can fix this.
0:19:50 > 0:19:54At the moment she's on some morphine to keep her comfortable.
0:19:59 > 0:20:01Just as long as she's not in any pain.
0:20:04 > 0:20:06Or as comfortable as possible.
0:20:06 > 0:20:08Absolutely.
0:20:12 > 0:20:14Cos I know she's travelled a long road...
0:20:17 > 0:20:19I don't think we can do, we can fix this, OK?
0:20:19 > 0:20:24- I'm really sorry. - Yes, OK, OK.
0:20:52 > 0:20:54There are children that we, we can't help,
0:20:54 > 0:20:56and all we can do is support them and, you know,
0:20:56 > 0:20:59TV series and things, people go to intensive care
0:20:59 > 0:21:00and they always get better.
0:21:00 > 0:21:03People who are resuscitated, they always spring back to life.
0:21:03 > 0:21:07So, the myth out there is that all of this machinery is going to make
0:21:07 > 0:21:11children and adults survive, whereas, actually, it's not.
0:21:11 > 0:21:15What we try to do is to create a situation where parents
0:21:15 > 0:21:18have some time to come to terms with the fact that their child
0:21:18 > 0:21:21is not going to survive, and most of the deaths that happen
0:21:21 > 0:21:25on intensive care in PICU here, are because we've withdrawn,
0:21:25 > 0:21:28because the parents have come to understand that there is,
0:21:28 > 0:21:31the child is just not going to make it, they're not going to heal,
0:21:31 > 0:21:34they're not going to get out of intensive care.
0:21:43 > 0:21:47As medicine moves forward, children with very complex conditions
0:21:47 > 0:21:50are becoming increasingly dependent on technology to keep them alive.
0:21:53 > 0:21:56Parents often become accustomed to their children
0:21:56 > 0:21:59needing intensive care, but with each new admission,
0:21:59 > 0:22:05a child's chances of pulling through diminish.
0:22:05 > 0:22:09Ceri-Ann and Lisa have spent many months in Great Ormond Street,
0:22:09 > 0:22:12with their daughters, Annie and Franceska.
0:22:12 > 0:22:14They are together again on intensive care.
0:22:16 > 0:22:19We had a good stint at home - four months - and she's been really well,
0:22:19 > 0:22:22but you just... It's part of Franceska,
0:22:22 > 0:22:24it's part of our life,
0:22:24 > 0:22:25it's what she does, so, like you say,
0:22:25 > 0:22:27you don't get used to coming into hospital,
0:22:27 > 0:22:30or used to being in intensive care, it's just your life
0:22:30 > 0:22:33and you just have to go with it. You've got no choice.
0:22:33 > 0:22:36You know, it's not winter, it's bronchiolitis season,
0:22:36 > 0:22:39and hey-ho, they're, our kids are generally going to get it,
0:22:39 > 0:22:42aren't they, and then to get a chest infection,
0:22:42 > 0:22:45we tend to be here, you know, and I think the scary part is
0:22:45 > 0:22:47they go so fast, don't they?
0:22:47 > 0:22:50One minute you're telling someone they're not well,
0:22:50 > 0:22:52and they're saying, "chest is clear,"
0:22:52 > 0:22:55and the next day you're in blue lights,
0:22:55 > 0:22:58flying up to Great Ormond Street, so it's, it's that fast, isn't it?
0:22:58 > 0:23:01It's so quick. You know, Christmas Day, she was fine,
0:23:01 > 0:23:05and from then onwards, she's just gone, donk.
0:23:07 > 0:23:10Franceska is Ceri-Ann's only child.
0:23:10 > 0:23:12She has profound cerebral palsy,
0:23:12 > 0:23:15and a severe curvature of the spine, called scoliosis,
0:23:15 > 0:23:17which is crushing her lungs,
0:23:17 > 0:23:19and making it difficult for her to breathe.
0:23:22 > 0:23:26She gets around in a wheelchair, and when she's well enough,
0:23:26 > 0:23:30attends her local school for children with severe learning needs.
0:23:30 > 0:23:34But each time Franceska is admitted,
0:23:34 > 0:23:37the team must ask whether it is still in her best interests
0:23:37 > 0:23:39to continue aggressive treatment.
0:23:41 > 0:23:45Next is Franceska Christie, who's an eleven-year-old,
0:23:45 > 0:23:47who is known to the unit.
0:23:47 > 0:23:49She's got quadriplegic CP, she has contractures,
0:23:49 > 0:23:50and quite a bad scoliosis.
0:23:50 > 0:23:54A seizure disorder, and she's got recurrent colonisation
0:23:54 > 0:23:55with a multi resistance Pseudomonas,
0:23:55 > 0:23:59and she's on home oxygen and has chronic lung disease.
0:23:59 > 0:24:02Wow. That's pretty amazing, isn't it?
0:24:04 > 0:24:06OK. Oh, that must be so painful.
0:24:06 > 0:24:10Although she's got obviously quite bad restrictive lung disease,
0:24:10 > 0:24:12she was intubated.
0:24:12 > 0:24:14We've now got her exuberated. She's now on Optiflow,
0:24:14 > 0:24:16the plan is to try and wean that off overnight.
0:24:16 > 0:24:18I haven't been able to do so, she had a bit of
0:24:18 > 0:24:20a increased work of breathing, tachypneic.
0:24:20 > 0:24:22I have to say you did very well to get her off.
0:24:22 > 0:24:24That's very impressive.
0:24:24 > 0:24:26OK, so we're going to re-engage
0:24:26 > 0:24:29with palliative care, before discharge?
0:24:29 > 0:24:32- I think we're going to need to, discuss a sort of escalation plan. - Yeah.- For the future.
0:24:32 > 0:24:35- And her main carer?- Is her mum.
0:24:35 > 0:24:38And Paediatric, Colchester, are they..?
0:24:38 > 0:24:39Colchester, yeah.
0:24:39 > 0:24:43Her mum's very involved and engaged and knowledgeable.
0:24:43 > 0:24:44OK.
0:24:48 > 0:24:52Franceska requires a large amount of equipment at home.
0:24:52 > 0:24:57She has 24-hour care, is fed through a tube into her stomach,
0:24:57 > 0:24:59and needs oxygen to help her breathing.
0:25:01 > 0:25:03The dilemma for the team in these cases,
0:25:03 > 0:25:06is whether technology is supporting her quality of life,
0:25:06 > 0:25:08or beginning to have negative effects on the patients,
0:25:08 > 0:25:11as well as their families.
0:25:13 > 0:25:16We're developing a population of children,
0:25:16 > 0:25:21who are technology dependent, and as you cross one technology hurdle,
0:25:21 > 0:25:26for example, home oxygen,
0:25:26 > 0:25:27it doesn't seem like such a big hurdle,
0:25:27 > 0:25:30to then cross the next hurdle which is,
0:25:30 > 0:25:32"oh, they'll just come home with a central line,"
0:25:32 > 0:25:34and the next hurdle is, "well, you've got a central line,
0:25:34 > 0:25:38"let's just put up some intravenous fluids,"
0:25:38 > 0:25:40so, incrementally these steps are made,
0:25:40 > 0:25:42until you actually see that children have become
0:25:42 > 0:25:44incredibly institutionalised,
0:25:44 > 0:25:46parents have become incredibly institutionalised,
0:25:46 > 0:25:50and it isn't until you hit intensive care,
0:25:50 > 0:25:52where the child's life is often in danger,
0:25:52 > 0:25:56where you start to really see the impact of all of those technologies,
0:25:56 > 0:25:58and you can start asking the questions,
0:25:58 > 0:25:59"is this the right thing to be doing?"
0:25:59 > 0:26:02OK, OK tell us about today.
0:26:02 > 0:26:08So, today, respiratory wise, we had a little bit of a blip.
0:26:08 > 0:26:12While on intensive care, Franceska is ventilated
0:26:12 > 0:26:15through a tube in her windpipe.
0:26:15 > 0:26:18The team tried to remove it yesterday,
0:26:18 > 0:26:20but she wasn't able to breathe on her own.
0:26:20 > 0:26:23The more times they replace the tube,
0:26:23 > 0:26:28the less likely it is she will be able to breathe for herself again.
0:26:28 > 0:26:32There was a right upper lobe collapse on yesterday's X-ray,
0:26:32 > 0:26:34and that doesn't look like this now.
0:26:34 > 0:26:40The tube is OK and she has that serious curvature scoliosis.
0:26:40 > 0:26:41I hope that this time it's because
0:26:41 > 0:26:43she's just blocked off that right side,
0:26:43 > 0:26:46in which case, if it's this, we'll sort it out,
0:26:46 > 0:26:48but obviously each time we do this it will get weaker.
0:26:48 > 0:26:52Quick as we can, OK, and maybe try again tomorrow.
0:26:52 > 0:26:54You think that's the problem?
0:26:54 > 0:26:56Well, it's something we can easily sort out.
0:26:56 > 0:26:58The only way of finding out is -
0:26:58 > 0:27:01when it's not there, can she manage without a tube? Simple as that.
0:27:01 > 0:27:03- It's not rocket science, is it? - Yeah, I know.
0:27:11 > 0:27:16When we've got a patient in a bed covered in tubes and wires,
0:27:16 > 0:27:18it can sometimes blur your vision a little bit,
0:27:18 > 0:27:22and somebody like Fran, actually, you know,
0:27:22 > 0:27:26if you saw her at home, and mum and dad will tell you this,
0:27:26 > 0:27:31she's really smiley, and she's happy, she's got a loving family,
0:27:31 > 0:27:33it's difficult to see that at the moment,
0:27:33 > 0:27:37but that's why it's so important to listen to the parents,
0:27:37 > 0:27:40and you know, they know their children better than anybody.
0:27:52 > 0:27:56A week later, Franceska is still struggling to breathe for herself.
0:28:00 > 0:28:05The team have called a meeting with her doctors to decide what is best.
0:28:05 > 0:28:08If she makes it through intensive care,
0:28:08 > 0:28:11it is likely she will need even more technology at home,
0:28:11 > 0:28:15and the team are questioning whether this is the right thing for her.
0:28:16 > 0:28:19Talking to the parents this morning, I got the impression
0:28:19 > 0:28:23that they understand she has a life-limiting condition.
0:28:23 > 0:28:28They're keen for her to be treated, to support a quality of life,
0:28:28 > 0:28:31but they don't want her to go through unnecessary suffering,
0:28:31 > 0:28:34and I kind of think if there was an on-going need
0:28:34 > 0:28:37for increased ventilatory support,
0:28:37 > 0:28:40it would have to be something that would be revisited with them.
0:28:40 > 0:28:43I would have to have very careful discussions
0:28:43 > 0:28:46about tracheostomy, because I would really question
0:28:46 > 0:28:48whether that would be valid.
0:28:48 > 0:28:52- Have you seen her chest X-rays? It's the most extraordinary... - Yes, yes, yeah.
0:28:52 > 0:28:54..Deformity.
0:28:54 > 0:28:57And that will get worse and there will be further impact
0:28:57 > 0:28:59and she will become more and more restricted.
0:28:59 > 0:29:02What you really witnessing is a zero reserve,
0:29:02 > 0:29:05no ability to cope with any insert, whether it be a little bit of fluid,
0:29:05 > 0:29:08an abnormal sodium, a small chest infection,
0:29:08 > 0:29:09and she will be in trouble.
0:29:09 > 0:29:12There's no reserve there. No pulmonary reserve.
0:29:12 > 0:29:15I think it's important that they leave here knowing
0:29:15 > 0:29:19that this is the course that this is likely to take, in all honesty.
0:29:20 > 0:29:23It's only a matter of time before there'll be some complication,
0:29:23 > 0:29:26and Franceska has so little reserve that, actually,
0:29:26 > 0:29:29it could be devastating, in terms of outcome for her.
0:29:31 > 0:29:33'It can be quite overwhelming,
0:29:33 > 0:29:36'with the amount of doctors that are'
0:29:36 > 0:29:38looking after your child,
0:29:38 > 0:29:41and she's in their hands, and you lose a bit of control, really,
0:29:41 > 0:29:44you know, coz you think, "er, it's quite scary."
0:29:46 > 0:29:48I think it's going to be quite tough,
0:29:48 > 0:29:50because obviously we know Franceska's poorly,
0:29:50 > 0:29:52we know her scoliosis is severe,
0:29:52 > 0:29:59that, obviously, she relies on just her one lung, to keep her going.
0:29:59 > 0:30:02So, you know, but hopefully
0:30:02 > 0:30:04they'll listen to what we want, as parents,
0:30:04 > 0:30:07and what we think's best for Franceska,
0:30:07 > 0:30:11and we can come to a happy ending.
0:30:11 > 0:30:12What we all want.
0:30:15 > 0:30:18- We met in clinic. - Yes, we have, yeah, yeah.
0:30:18 > 0:30:22It was about four years ago and I was amazed to see how well she's done.
0:30:22 > 0:30:23- She's done well.- She has.
0:30:23 > 0:30:27But what I think is really, really important is to recognise
0:30:27 > 0:30:32that we are at the end of a respiratory reserve here.
0:30:33 > 0:30:38There's little things we can do to help, but we have to recognise when
0:30:38 > 0:30:41we've done as much as is reasonable to.
0:30:41 > 0:30:45What I would hope for in this time
0:30:45 > 0:30:47is that we get her back onto oxygen.
0:30:47 > 0:30:50- Hmm.- And she can go home on oxygen. - Hmm, hmm.
0:30:50 > 0:30:53- So that, I think that should be our plan for now.- OK.
0:30:53 > 0:30:56- But we're going to have to recognise that this could happen again.- Yeah.
0:30:56 > 0:31:00And then we need to have some way of thinking about
0:31:00 > 0:31:02what we might do in that situation.
0:31:03 > 0:31:07One of the options is the possibility of using a mask,
0:31:07 > 0:31:12we use the term CPAP, or BiPAP, and this is possible.
0:31:12 > 0:31:16It's not easy and it would be quite hard work for you,
0:31:16 > 0:31:21but if you felt that it was in her interests to explore that,
0:31:21 > 0:31:25either ourselves or Addenbrooke's could do so.
0:31:25 > 0:31:29Yeah, I know. It's not hard work. I would do it.
0:31:29 > 0:31:31- Well, I appreciate...- You know.
0:31:31 > 0:31:35And I have long since given up and judging what parents can do
0:31:35 > 0:31:38because they always amaze me, what parents can cope with.
0:31:38 > 0:31:41- So there's no way I'm judging what you can cope with.- No.
0:31:41 > 0:31:43- But I'm giving you the option. - That's great.
0:31:43 > 0:31:46That if you felt that this is too much for us as a family
0:31:46 > 0:31:49but in particular that if this is too much for her,
0:31:49 > 0:31:51then I would accept that completely.
0:31:51 > 0:31:55- But my feeling is we should give her a chance.- Absolutely.
0:31:55 > 0:31:57I haven't got any other children,
0:31:57 > 0:32:01- I've only got Franceska so, you know.- Yeah.
0:32:05 > 0:32:08We might be going home soon.
0:32:08 > 0:32:10Dad's got to go back to work.
0:32:10 > 0:32:13How did you feel after the meeting?
0:32:13 > 0:32:15- Good, actually.- Yeah.
0:32:15 > 0:32:18- I thought it was going to be a lot harder.- Yeah.
0:32:18 > 0:32:21But actually it was, they were all for her
0:32:21 > 0:32:23and what they could do for her to get her home
0:32:23 > 0:32:26and having them things in plan, definitely, so yeah,
0:32:26 > 0:32:30- I do feel...- There's been some progress been made?- Yeah.
0:32:30 > 0:32:33It's like something's just been lifted -
0:32:33 > 0:32:38just relieved that everything is going in the right direction
0:32:38 > 0:32:41and that everything's in place, should we need it.
0:32:41 > 0:32:44So yeah, it's good.
0:32:47 > 0:32:50If the parents want to take on the responsibility
0:32:50 > 0:32:53of non-evasive ventilation with all that it entails,
0:32:53 > 0:32:56and she's been successfully established
0:32:56 > 0:32:59onto non-evasive ventilation,
0:32:59 > 0:33:02then that's a burden of care that they would have to take on
0:33:02 > 0:33:05and commit to taking on - that's a huge thing,
0:33:05 > 0:33:09that's a huge thing, not only for them but also for Franceska,
0:33:09 > 0:33:12who you're asking to sleep then every night with a big mask on her face
0:33:12 > 0:33:17and a big machine blowing air into her every night,
0:33:17 > 0:33:21which is no small undertaking.
0:33:34 > 0:33:38Maisie Harris has been off intensive care for a week now,
0:33:38 > 0:33:41but she still stops breathing regularly.
0:33:41 > 0:33:43Staff are keen to keep her on the ward
0:33:43 > 0:33:47but they're having to breathe for her several times a day manually,
0:33:47 > 0:33:50with a bag attached to her breathing tube.
0:33:50 > 0:33:52They're struggling to cope.
0:33:52 > 0:33:58Already today we've had to manually ventilate her about seven times,
0:33:58 > 0:34:04so it's, from a nursing perspective, she's a very scary child
0:34:04 > 0:34:06to have on the ward.
0:34:06 > 0:34:09She's on such high pressures that we would have refused, by now,
0:34:09 > 0:34:11any other child.
0:34:11 > 0:34:16It's just because Maisie is, has to be maintained on those pressures
0:34:16 > 0:34:18in order for her to stay alive,
0:34:18 > 0:34:21otherwise then she would have to live a life on intensive care.
0:34:22 > 0:34:27She does have a quality of life, you know, when she is stable,
0:34:27 > 0:34:33but it's, she has less of that quality when she's more unstable.
0:34:33 > 0:34:37We want to be able to play with her, get her out into the chair,
0:34:37 > 0:34:40do reading with her, do some physio with her,
0:34:40 > 0:34:43but at the moment that's making... It's not really happening
0:34:43 > 0:34:46because she's needing manual ventilation
0:34:46 > 0:34:49so we need to physically bag her more times
0:34:49 > 0:34:51than we are getting to play with her.
0:34:53 > 0:34:56Maisie, what's the problem?
0:35:07 > 0:35:10That's it. All right, baby.
0:35:14 > 0:35:16Don't go blue again, babes.
0:35:18 > 0:35:21All her mouth and tongue and everything else
0:35:21 > 0:35:25went sort of a bit of a navy blue, grey colour, which means that she,
0:35:25 > 0:35:31totally her airways collapsed and she couldn't get any oxygen anywhere
0:35:31 > 0:35:33so essentially what we call it is bagging.
0:35:33 > 0:35:37She shouldn't have to have that done eight times a day.
0:35:37 > 0:35:40As a, as a human being she shouldn't have to have that done.
0:35:43 > 0:35:47Yesterday she had quite a bad day in that she had about nine episodes.
0:35:47 > 0:35:51She'd go very blue, become apnoeic, they'd have to bag her.
0:35:51 > 0:35:54Her CO2 would rise to say, 10, 11.
0:35:54 > 0:35:55She did have one overnight.
0:35:55 > 0:35:59Yeah, one overnight and one occasion in the day where there was,
0:35:59 > 0:36:01she was fast asleep and did it without,
0:36:01 > 0:36:05not a cough, retch, anything - she just went navy blue and needed it.
0:36:05 > 0:36:08A very precarious situation we're in.
0:36:08 > 0:36:13We are just holding on and if, if it wasn't for the intensity
0:36:13 > 0:36:18of nursing care being delivered here, she would be back in PICU.
0:36:18 > 0:36:22And we have nothing else we can change, that I can think of.
0:36:22 > 0:36:25From a nursing point of view, we're managing but just,
0:36:25 > 0:36:28and it has to be a senior member of staff
0:36:28 > 0:36:31or a senior five with support to look after her,
0:36:31 > 0:36:33because we're manually ventilating her.
0:36:33 > 0:36:36You can't use a bag or a mask, it doesn't work,
0:36:36 > 0:36:39so it's, it's, if it gets much worse I mean, I don't know
0:36:39 > 0:36:41how much longer we can cope nursing intensity wise
0:36:41 > 0:36:44cos at the minute it's taking a senior to look after her
0:36:44 > 0:36:46on every shift, day and night.
0:36:46 > 0:36:49It's difficult, cos they are protective of the ITU beds.
0:36:49 > 0:36:52They do understand but they've got everything else to look at, so.
0:36:52 > 0:36:54They don't want to keep bouncing back and forth
0:36:54 > 0:36:58because you get down there and she's playing. She recovers so fast.
0:36:58 > 0:37:02I think mum still thinks it's like she was when she was younger,
0:37:02 > 0:37:05but I don't think she realises that Maisie's much worse.
0:37:06 > 0:37:09Yes, I think seeing the mother when she was younger,
0:37:09 > 0:37:11Maisie is a lot worse than she was.
0:37:12 > 0:37:15So I'm afraid, we're in for a long haul, you know,
0:37:15 > 0:37:21there's no quick fix and we have to be honest that,
0:37:21 > 0:37:25that there could be a collapse that we don't really turn round well
0:37:25 > 0:37:29on the ward and the parents will have to be warned
0:37:29 > 0:37:33that there is also the possibility that we may have an event
0:37:33 > 0:37:36from which we can't resuscitate her.
0:37:36 > 0:37:38Because she does go into cardiac very easily.
0:37:40 > 0:37:42Hi, hello.
0:37:43 > 0:37:45Hi, there.
0:37:45 > 0:37:48Cos one of the big aims was to try and get Maisie home.
0:37:48 > 0:37:50- Mm-hm.- And this is proving tricky.
0:37:50 > 0:37:53We're just not getting there with Maisie, you know,
0:37:53 > 0:37:58and at the moment we're managing to keep her out of intensive care
0:37:58 > 0:38:01but it's, it's not easy
0:38:01 > 0:38:04and so this is a bit of a step backwards
0:38:04 > 0:38:08- in terms of getting her home.- Yeah, I know that anyway.- Yeah?- Yeah.
0:38:08 > 0:38:10- You see that? - She can take as long as she likes.
0:38:10 > 0:38:13- Huh?- She can take as long as she likes.- Yeah.
0:38:13 > 0:38:15As much as I want to get home,
0:38:15 > 0:38:17I just want her to get better, to be honest.
0:38:17 > 0:38:21Hmm, but at the moment they're happening every day, you know.
0:38:21 > 0:38:22Mm-hm.
0:38:22 > 0:38:23And we're going to keep going
0:38:23 > 0:38:26and we're going to keep trying out those bags, you know,
0:38:26 > 0:38:31doing the bagging, and, and working at it, but it is becoming difficult.
0:38:32 > 0:38:37What we need to do is see if we can manage on this machine,
0:38:37 > 0:38:40because if we get to more complex machines to keep a child alive,
0:38:40 > 0:38:44then it becomes almost impossible to send them home on those machines.
0:38:45 > 0:38:50She always has had something wrong, but she'll be all right.
0:38:53 > 0:38:57Everyone is trying to do their best for Maisie,
0:38:57 > 0:39:01but her current instability is putting immense pressure on the ward staff.
0:39:01 > 0:39:07I'm not sure if they've grasped how at the edge of our expertise
0:39:07 > 0:39:09we are in managing Maisie.
0:39:11 > 0:39:13Without hope we have nothing, right?
0:39:13 > 0:39:17And so we have to cling onto hope and we're going to stay hopeful,
0:39:17 > 0:39:21but in my heart I am rather doubtful that we're moving in a direction
0:39:21 > 0:39:24that is going to be favourable for Maisie in the long term.
0:39:27 > 0:39:31The question of resources and how much resources are being soaked up
0:39:31 > 0:39:34by one patient is a very difficult issue
0:39:34 > 0:39:36and it's something we wrestle with at this hospital,
0:39:36 > 0:39:39but in a way it's what Great Ormond Street is about.
0:39:39 > 0:39:42This child needs intensive resources.
0:39:42 > 0:39:44It may work, it may not,
0:39:44 > 0:39:48but she's not going to get it anywhere else very reliably.
0:39:52 > 0:39:55Maisie's airways collapsed again this morning
0:39:55 > 0:39:59and the team have been unable to get her stable on her ventilator.
0:39:59 > 0:40:02They've had to manually bag her repeatedly.
0:40:05 > 0:40:09Intensive care consultant, Ruchi Sinha has come to the ward
0:40:09 > 0:40:12to try to get Maisie through this crisis
0:40:12 > 0:40:15without having to send her back to intensive care.
0:40:17 > 0:40:20So the last time she went down to PICU was a week ago.
0:40:20 > 0:40:23When was the last time? About two weeks?
0:40:23 > 0:40:27- OK, and it was the same thing again? - Yeah. This is what she does.
0:40:27 > 0:40:29OK. Maisie sometimes does this.
0:40:29 > 0:40:31She does need like higher pressures,
0:40:31 > 0:40:33probably because of her malacia,
0:40:33 > 0:40:37but actually what I want to do is try and get her over it
0:40:37 > 0:40:40by putting her on higher pressures up here on the ventilator
0:40:40 > 0:40:43and see if we can manage up here on Badger because what we,
0:40:43 > 0:40:46we don't really change much by taking her down to PICU.
0:40:46 > 0:40:49We take her down to PICU and increase her pressures
0:40:49 > 0:40:51and then she comes back here again
0:40:51 > 0:40:53and we keep moving her to and forth from PICU by changing,
0:40:53 > 0:40:56just for changing her pressures.
0:40:58 > 0:41:00Oh, all right.
0:41:00 > 0:41:02What I did was, when we were bagging her
0:41:02 > 0:41:05she was needing pressures of 40 on 18 and she wasn't sinking
0:41:05 > 0:41:08but she was alert and responsive and her CO2's 10, pH 7.3.
0:41:08 > 0:41:12I just didn't want to take her down to PICU straight away
0:41:12 > 0:41:15because it seemed like when we were bagging her, we were managing to...
0:41:15 > 0:41:18- If she's got enough... - Yeah, exactly.
0:41:23 > 0:41:26Maisie's airways have suddenly collapsed.
0:41:26 > 0:41:30Again, the team are having to breathe for her.
0:41:30 > 0:41:33She does this. Normally take, give her a few higher peeps on the bag.
0:41:33 > 0:41:35Just looking at her pupils just now.
0:41:35 > 0:41:37This is what she does on a daily basis.
0:41:37 > 0:41:39She'll cough and we put her back on the ventilator.
0:41:39 > 0:41:42If she's settled, she's not too bad.
0:41:42 > 0:41:45Shall we take this opportunity to suction and then we know she's...
0:41:45 > 0:41:49It's all right, it's going to come up.
0:41:50 > 0:41:51And er, that's the only thing.
0:41:55 > 0:41:58I think she's going into vagal...
0:41:58 > 0:41:59MACHINES BEEP
0:42:01 > 0:42:04She's opened her eyes.
0:42:04 > 0:42:06There you go.
0:42:06 > 0:42:09Hi there, Maisie.
0:42:09 > 0:42:12But now it's, it's prolonging every single time now.
0:42:12 > 0:42:16She looks better and her heart rate's come back to her baseline.
0:42:22 > 0:42:25Maisie had another episode later in the day
0:42:25 > 0:42:28and eventually had to be moved back to intensive care.
0:42:32 > 0:42:36Consultant Christine Pierce is questioning whether it is right
0:42:36 > 0:42:41for Maisie to keep being readmitted if she continues to deteriorate.
0:42:41 > 0:42:46Is it worth looking at how many ICU days...
0:42:46 > 0:42:49in total, she's had?
0:42:49 > 0:42:52- Yeah, I agree, she's been home, she's never been home.- No.
0:42:52 > 0:42:57- She's what? A year and a half. - Er, no, she's a year old.
0:42:57 > 0:42:59A year old. And never been home?
0:43:00 > 0:43:03More than that I think, how many days on ICU has she had?
0:43:03 > 0:43:06Would it be possible for somebody to look at that?
0:43:06 > 0:43:10Because I just, I just really worry about the whole thing to be honest.
0:43:11 > 0:43:14The difficulty is she has a treatable condition.
0:43:14 > 0:43:17Her mum has congenital hyperventilation syndrome
0:43:17 > 0:43:19- and tracheomalacia is potentially reversible.- Hmm.
0:43:19 > 0:43:22But if we're a year down the line
0:43:22 > 0:43:25and you know, it would just be interesting to do the numbers.
0:43:25 > 0:43:28But she does not arrest but semi arrest with all these,
0:43:28 > 0:43:30multiple times and one time she, you know,
0:43:30 > 0:43:33she may not be able to be opened up again.
0:43:33 > 0:43:37That's the problem, every time we've brought her back she seems worse
0:43:37 > 0:43:40and we've needed more pressure to open her back up again.
0:43:40 > 0:43:44Cos it has been now, a year, and we should just do the numbers,
0:43:44 > 0:43:48you know, how long has she been on ICU? How many days outside ICU?
0:43:48 > 0:43:52What are we achieving and, and then sit down and talk about it.
0:43:54 > 0:43:55It's about point nine seconds.
0:43:55 > 0:43:58We run an acute service in this hospital
0:43:58 > 0:44:01so there are children all over the country who come here
0:44:01 > 0:44:03who have reversible diseases
0:44:03 > 0:44:06who can then go back to their local hospital, so that's an acute bed.
0:44:08 > 0:44:11Clearly this child has a right to life as much as any other child.
0:44:11 > 0:44:14Their demands, children like this on the state,
0:44:14 > 0:44:16on our costs,
0:44:16 > 0:44:20are huge compared to the faster turnaround
0:44:20 > 0:44:22of a more stable child.
0:44:22 > 0:44:26So we have this child and other children who will now occupy beds
0:44:26 > 0:44:30for a much more protracted time in terms of cost,
0:44:30 > 0:44:34and health economics and that awful term bed-blocking is raised.
0:44:34 > 0:44:39And I don't know what the answer is but our priority is to bring more
0:44:39 > 0:44:42children in who are reversible
0:44:42 > 0:44:46and who have curious diagnosis which we can do here.
0:44:53 > 0:44:56The intensive care consultants are worried
0:44:56 > 0:44:59that they are not making progress with Maisie.
0:44:59 > 0:45:01Colin Wallis wants to ask the surgical team
0:45:01 > 0:45:05if there is anything they can do to help her.
0:45:06 > 0:45:10We presented Maisie here before but we're bringing her back again
0:45:10 > 0:45:12because we are really stuck with this child.
0:45:12 > 0:45:16We have these moments of just complete shut-down of the airways
0:45:16 > 0:45:19which are getting increasingly difficult to manage
0:45:19 > 0:45:23and on last Friday we, she probably arrested
0:45:23 > 0:45:26every three hours for a 12-hour period.
0:45:26 > 0:45:29PICU not unreasonably says something has to happen here.
0:45:29 > 0:45:32We can't continue like this.
0:45:32 > 0:45:34It's just too vulnerable.
0:45:34 > 0:45:40And so we've, we've been discussing options which are to do nothing,
0:45:40 > 0:45:44in other words, say this is as much as we can manage...
0:45:45 > 0:45:50..or possibly introducing some form of stent
0:45:50 > 0:45:54which just will give enough support to stop these events from happening.
0:45:55 > 0:45:59But we're very stuck here because there's no effort
0:45:59 > 0:46:01to try and resuscitate herself
0:46:01 > 0:46:04in terms of increased respiratory effort.
0:46:04 > 0:46:07So if I'm playing, not devil's advocate
0:46:07 > 0:46:10because it seems to be nothing else,
0:46:10 > 0:46:14it seems like this is futile because I, I don't think
0:46:14 > 0:46:17putting a stent in that single airway
0:46:17 > 0:46:20is going to make any difference to, for the malacia in the bronchi...
0:46:22 > 0:46:25..if she can't drive her ventilation.
0:46:25 > 0:46:30Then, OK, it's complex in that the mother has the same condition.
0:46:30 > 0:46:32Without the malacia.
0:46:32 > 0:46:35Without the malacia, correct.
0:46:35 > 0:46:39And, and it would, it's quite difficult at this stage
0:46:39 > 0:46:42to say there is nothing more we can do.
0:46:42 > 0:46:45But I would be astonished if she got better after stenting but if,
0:46:45 > 0:46:50for the sake of the family's, particularly the mother's anxiety
0:46:50 > 0:46:53that we hadn't done enough for her child,
0:46:53 > 0:46:58that might be what's required in order to say we've tried everything.
0:46:58 > 0:47:00I think it's quite important
0:47:00 > 0:47:05- that we don't do things that we feel are futile.- Yeah.
0:47:05 > 0:47:08But I don't think the volume of these patients we see,
0:47:08 > 0:47:12we can be 100% sure and if the mother has the same condition,
0:47:12 > 0:47:17- you can understand why she's so reluctant to accept that.- Yes.
0:47:25 > 0:47:28Maisie is having her airways scanned
0:47:28 > 0:47:30to see if she would benefit from surgery.
0:47:37 > 0:47:41But the softness is too far spread to make an operation worthwhile.
0:47:45 > 0:47:48The team can do nothing but hope she improves on her own.
0:47:51 > 0:47:55We can do a lot technologically, but we do question sometimes
0:47:55 > 0:47:57whether we ought to be doing it.
0:47:57 > 0:48:01Every now and then a child will come in, you save them from death,
0:48:01 > 0:48:05but you get stuck halfway through that recovery phase
0:48:05 > 0:48:08and you plateau there and they are now stuck on this ventilator,
0:48:08 > 0:48:09stuck on technology.
0:48:11 > 0:48:13You realise you are stuck in this situation
0:48:13 > 0:48:17when it's now become almost too late to stop,
0:48:17 > 0:48:20because there's been too much time invested,
0:48:20 > 0:48:22there's been too much hope
0:48:22 > 0:48:27and it looks like there's too much to lose by stopping.
0:48:45 > 0:48:49Franceska Christie has not been able to return home as everyone had hoped
0:48:49 > 0:48:52and is still on intensive care.
0:48:54 > 0:48:57She's now been here for 21 days,
0:48:57 > 0:49:00five times longer than the average patient.
0:49:00 > 0:49:04She has a chest infection and is unable to breathe without support.
0:49:05 > 0:49:07The longer she's on intensive care,
0:49:07 > 0:49:10the more difficult it is to get her home.
0:49:12 > 0:49:15And last but not least, we've got Franceska Christie.
0:49:15 > 0:49:20She was established yesterday on nocturnal CPAP,
0:49:20 > 0:49:24which was planned to come off this morning
0:49:24 > 0:49:26and she did not tolerate to come off the CPAP,
0:49:26 > 0:49:30she de-saturated down to the mid-80s and severe work with breathing
0:49:30 > 0:49:33so we left her on CPAP and in addition to that,
0:49:33 > 0:49:36she spiked another temperature.
0:49:37 > 0:49:40So she needs another chest X-ray, please, today.
0:49:40 > 0:49:44Can we re-culture everything again?
0:49:44 > 0:49:46We've re-cultured everything.
0:49:46 > 0:49:49I haven't started antibiotics because it was a one-off temperature.
0:49:49 > 0:49:52But something's not quite right because this morning
0:49:52 > 0:49:55she didn't manage to come off CPAP.
0:49:57 > 0:50:00Hello. Good morning.
0:50:00 > 0:50:04You didn't want to come off your ventilator this morning, did you?
0:50:04 > 0:50:08Are you seeing me? I'm not sure you are. Are you?
0:50:08 > 0:50:10You're closing your eyes now.
0:50:10 > 0:50:13Can I have a little ears, please?
0:50:13 > 0:50:16She de-satted down to 80.
0:50:18 > 0:50:21It's all right, sweetie. There you go. That's not so bad.
0:50:26 > 0:50:29Hmm, she's got lots of creps on that side.
0:50:29 > 0:50:31Let's just get a chest X-ray.
0:50:34 > 0:50:37Colin Wallis has been called in again
0:50:37 > 0:50:39to review Franceska's lung scans.
0:50:39 > 0:50:44Big dilated bronchi, squashed up in the left side.
0:50:44 > 0:50:47She's mostly living on her right lung.
0:50:50 > 0:50:52He still hopes that she will be able to go home
0:50:52 > 0:50:54with night-time ventilation.
0:50:55 > 0:50:58The team are worried she might be too unstable.
0:50:59 > 0:51:03My anxiety is that if she keeps doing this with the fevers and stuff,
0:51:03 > 0:51:07- I'm not sure we necessarily are going to stabilise her.- Yeah.
0:51:08 > 0:51:11And we were looking in a little more detail
0:51:11 > 0:51:15at her lung structure itself and it's not great,
0:51:15 > 0:51:19and it might be that if we get to a point over the next few days
0:51:19 > 0:51:22where we're not ready for it,
0:51:22 > 0:51:25we have another discussion with the palliative care team
0:51:25 > 0:51:27about where to go.
0:51:28 > 0:51:31They're very concerned about her quality of life,
0:51:31 > 0:51:34so I don't think they would want her to be in hospital.
0:51:34 > 0:51:37- And that's what you picked up?- All this is to try and get her back home.
0:51:37 > 0:51:41Yes, yes, and I think that should be all of our aims, to do that.
0:51:41 > 0:51:45- And not necessarily strive for perfection.- Yeah.
0:51:48 > 0:51:52When kids become sick enough to need intensive care and when they,
0:51:52 > 0:51:57when they come here with complex, pre-existing conditions,
0:51:57 > 0:52:00and if that happens on more than one occasion,
0:52:00 > 0:52:03I think it's our job to sort of flag up that maybe this is a time
0:52:03 > 0:52:06that we need to start thinking about
0:52:06 > 0:52:08the end of life for these children.
0:52:08 > 0:52:12Quite often before then, it's not something parents want to consider
0:52:12 > 0:52:16and frankly, a lot of the medical teams don't want to either,
0:52:16 > 0:52:20because they've had a long relationship with children.
0:52:21 > 0:52:24But those discussions have to be had.
0:52:28 > 0:52:30So since we last chatted,
0:52:30 > 0:52:33things haven't gone the way that we hoped for Franceska.
0:52:33 > 0:52:34No, no.
0:52:34 > 0:52:38The bigger question really is where we go from here.
0:52:38 > 0:52:42I'm very worried that this heralds a new period in her overall condition
0:52:42 > 0:52:46and that, as we discussed, her reserve is poor,
0:52:46 > 0:52:50her disease is progressive and there will become a point
0:52:50 > 0:52:54where we're going to actually need to do more for her and in the future
0:52:54 > 0:52:59a point at which it's inappropriate or unfair to do any more
0:52:59 > 0:53:02than what we're doing.
0:53:02 > 0:53:06And it really looks as if she's now at the point at which,
0:53:06 > 0:53:09- at the very least, she's going to need night-time support.- Yeah.
0:53:11 > 0:53:14And as Colin has said, that needs to be established
0:53:14 > 0:53:17so that she's in a steady state.
0:53:17 > 0:53:21My worry is that we won't be able to establish her
0:53:21 > 0:53:27onto night-time respiratory support in a stable way.
0:53:29 > 0:53:32If at the end of the weekend we're at, we've found that
0:53:32 > 0:53:35we've been unable to establish that for her,
0:53:35 > 0:53:37we need to have a think about longer term,
0:53:37 > 0:53:41what's in her best interests and revisit where we're going.
0:53:41 > 0:53:44- Does that sound reasonable? - Yeah.- Yeah.
0:53:44 > 0:53:48- So she's quite poorly, isn't she? - Yes, yeah.
0:53:56 > 0:54:00Are there any questions you have about anything that we're doing?
0:54:00 > 0:54:03No, I think you're doing everything, you know, what you can,
0:54:03 > 0:54:05and you know, key thing is, you know,
0:54:05 > 0:54:08obviously finding out where the infection is
0:54:08 > 0:54:11and just trying to see if we can establish her,
0:54:11 > 0:54:16stable enough for her to have the CPAP overnight and have it at home.
0:54:16 > 0:54:20- You know, enjoy what time we have got, you know.- Yeah.
0:54:20 > 0:54:22But obviously we're not silly.
0:54:22 > 0:54:25We've always said we'd never let her suffer or be in pain.
0:54:27 > 0:54:31I think it's tremendously brave of you to say that.
0:54:33 > 0:54:36It's in one respect much easier for us cos we've,
0:54:36 > 0:54:39we've not known Franceska for all those years.
0:54:40 > 0:54:45I never forget how important it is for mum and dad at the bedside.
0:55:10 > 0:55:13Over the weekend, Franceska has defied expectations
0:55:13 > 0:55:17and managed to stabilise enough to leave intensive care.
0:55:18 > 0:55:20That's good.
0:55:20 > 0:55:23And you're feeding and you're not using oxygen at night time?
0:55:23 > 0:55:26Sometimes she's having the odd litre through it.
0:55:26 > 0:55:29It all depends on her really, you know.
0:55:29 > 0:55:33Hmm, and what oxygen do you have at home?
0:55:33 > 0:55:37I have up to five litres at home.
0:55:37 > 0:55:42We've had a conversation with your local paediatrician
0:55:42 > 0:55:48and she is aware that you may now be in the community
0:55:48 > 0:55:52with CPAP and IV fluids, and she is OK with that.
0:55:52 > 0:55:54That's good news.
0:55:54 > 0:55:56I think this is all very big,
0:55:56 > 0:56:00a major step forward because it does mean we're now in a position
0:56:00 > 0:56:02where we can consider going home.
0:56:03 > 0:56:06It's going to be hard work and especially at the beginning
0:56:06 > 0:56:08as you're getting used to things.
0:56:08 > 0:56:10But she's my only one and I'm very lucky,
0:56:10 > 0:56:13I've got lots of people around me, so you know,
0:56:13 > 0:56:15I'm lucky in that sense, you know.
0:56:15 > 0:56:19As I've said when we had our other meeting, there's very little reserve.
0:56:19 > 0:56:22She's got nowhere else to go and nowhere to fight this thing
0:56:22 > 0:56:25but we can keep things going like this
0:56:25 > 0:56:28and we can keep her happy and she's having a good life,
0:56:28 > 0:56:30and you're OK with things, we can keep going.
0:56:32 > 0:56:34- I will.- OK.- Thank you very much, thank you.- Bye.
0:56:34 > 0:56:36- See you in a bit. Bye. - Lovely. Thank you.
0:56:36 > 0:56:41As long as it was in her interest and she was benefiting from it,
0:56:41 > 0:56:44and obviously wasn't causing her any pain or making her suffer,
0:56:44 > 0:56:46then I will do whatever it takes
0:56:46 > 0:56:48and I will go home with whatever machine,
0:56:48 > 0:56:51whatever equipment and do whatever I need to do.
0:56:52 > 0:56:54Going home!
0:56:54 > 0:56:57It's probably about three or four times I've been told, you know,
0:56:57 > 0:56:59"This is it and there's no more we can do."
0:56:59 > 0:57:03And you know, even when I left my local hospital
0:57:03 > 0:57:04when she was being ventilated,
0:57:04 > 0:57:08it was discussed whether ventilation was the right thing for Franceska
0:57:08 > 0:57:11and obviously me and her dad was like,
0:57:11 > 0:57:13"Yeah, we've got to give her that chance."
0:57:14 > 0:57:18And if at this moment in time, if someone was to send me back,
0:57:18 > 0:57:20back to intensive care, I'd be like,
0:57:20 > 0:57:24"Yeah, you ventilate her, you take her back and you fix her."
0:57:50 > 0:57:54There is this tension and dilemma as to what medicine can offer
0:57:54 > 0:58:01at the maximum, at its peak and what people think is appropriate.
0:58:01 > 0:58:05You know, do you have ten heart/lung machines you can buy
0:58:05 > 0:58:09or one case that's carried and looked after for two years?
0:58:12 > 0:58:14But those are huge ethical questions
0:58:14 > 0:58:17to be answered by, you know... They're not answerable really
0:58:17 > 0:58:19in our structure, in our society, so we carry on.
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