A Delicate Balance Great Ormond Street

Hello, little man. Oh, you are awake. That's good.

Great Ormond Street Children's Hospital, London.

Each year, its doctors treat thousands of critically ill children from across the country.

For us, the happy bits are the children who come in

and need all of our skill and expertise all at once

in a big rush and we manage to get them through.

Modern technology means that most children will spend

just a short time here.

But a small minority become

dependent on medical science to keep them alive.

It's a delicate balance between what we can do

and what we should do, ought to do, the ethics of what we're doing.

When medicine can do so much, parents and doctors

face difficult decisions about how far to push treatment.

It then puts me in a situation, of having a very, very sick girl

that I'm having to do an awful lot to pull her through

and whether that's the right thing to do.

Medicine is advancing and it does extend the possibility of life

and the dilemma and the challenge comes to recognise

when it isn't going to work and when...when it's time to stop.

BEEPING

Maisie Harris was born nearly a year ago

and has never left Great Ormond Street Hospital.

She has an incredibly rare condition called Ondine's Curse.

When she goes to sleep, her brain doesn't tell her to breathe.

A machine called a ventilator breathes for her.

Maisie also has another rare condition

known as tracheomalacia, which makes her windpipe and airways very weak.

Doctors had hoped she would be able to go home with a ventilator.

Recently, Maisie has been having episodes where her airways

completely collapse and she has to be rushed to intensive care.

It's a real dilemma, I mean,

Maisie's clearly quite a sentient young girl

and will be, you know,

a normal, interactive, developmental child who will run and walk

and do all sorts of normal things that normal children do.

But she won't do it without a ventilator

and to get her to the stage where she may be normal

and off a ventilator during the day time, may take two years.

Maisie's airways are so weak that she needs powerful ventilation

which risks damaging her lungs.

The doctors are concerned her complicated condition might never improve.

Now, you know Dr Kilner, and I'm Dr Petros,

one of the consultants on the intensive care unit,

and the reason we're meeting is to give you an update.

So, since Maisie's been on Miffy ward

she's had a number of events where she's deteriorated.

And needed bagging and she's needed to come back to, to ITU.

And initially we weren't, we weren't

sure why, why that was,

but more recently we,

we did further investigations to try

and find the cause, and we found that she,

unfortunately, has very floppy airways, which are quite compressed.

The tubes in her lungs are tiny.

They should be like straws, yeah, like firm straws,

but they're like the top of a balloon, they collapse down, you know when you blow up a balloon.

-Yes.

-And she can't get the air in and out.

The difficulty now, the treatment of the floppy airways is...

can be quite challenging.

Would it be hoped that gradually her airways would get stronger?

Yeah, they may not get stronger

but they may get a little bit bigger as she gets older,

but the problem is that, you know it may not be in time, you know,

the airways may not grow in time before something serious happens.

The worry that we have, is that the pressures that we have to

keep using, and that she keeps coming back to intensive care, suggests that

the straws aren't growing.

And also, intensive care is a dangerous place,

and if the tubes block or something happens, something sad might happen.

-Yes.

-Is that heavy news for you, I'm afraid?

-Yeah, but it's got to be said though, so.

-You need to know.

-Yeah.

-And be aware of.

I think it's important that people know the total picture

from our perspective.

We see children who do die with these things, so perhaps we're

a little more cynical, or realistic, I don't know.

But if I were a parent - well, I am a parent -

but if I were a parent with this particular condition,

I would want to know that this was a really outside possibility,

because nobody can turn round and say to me, "Well, you never told us."

This is her normal one, and this is our PIC ventilator.

If we take this one with her, then she won't have to come back here any more.

Maisie's mother, Rachel, was also born with Ondine's Curse

and still uses a ventilator at night.

Maisie's other condition, tracheomalacia, complicates things

further and doctors don't know if they will ever get her home.

It would have been wonderful if, if Maisie had been born fine,

that would have been lovely, but everyone was worried,

obviously, when Rachel was pregnant.

I knew she would have it,

they said she would have 50-50 chance to have it, but I knew anyway,

cos I carry, I carry the gene so it was a bit obvious she would have it.

It didn't bother me at all.

-Unfortunately Maisie's had...

-More wrong.

-Bit of a harder time.

Maisie's had more wrong than Rachel.

When you look at her at the moment, she's such a normal baby

and she's so chubby in her legs, and you know,

ain't she, you know?

And, of course, it's inside her.

Maisie's multiple problems mean she needs intensive care

more and more, with no end in sight.

The team must ask whether it is right to continue.

In a few weeks she turns one,

so we've been fighting a losing battle now for a long time.

Maisie has never been out of this hospital, ever.

And she's nearly one.

So, yeah, to you and I she looks like she is

batting about, but how many years do we keep her like this for,

in a cot, in a chair attached to a ventilator, it's not really

a quality of life, you know, and, and that's what has to be balanced.

She's practically lived here for a year.

We've made some transitions during that time, but if we can't get

her off that ventilator, then,

she's just living in this room,

day and night, day and night, day and night, and it will never end.

It's no quality of life.

A few days later, Maisie seems to have made some improvement

and doctors have decided to move her from intensive care to Badger,

the respiratory ward.

That's it. Maisie, are you ready to go? High five.

Let's get out of here.

Right.

I give you the multi one, what else?

All right.

She's only just arrived.

The situation has been over the weekend, she's been pretty stable.

However, she's on very high pressures.

Unfortunately, the more we keep going with these high pressures,

the more damage we're going to do to each lung,

so we're in a very tricky position here.

They have been, in intensive care,

very reluctant to reduce her pressures because

they don't want her to crumble,

because they want to move her across here,

so they, not unreasonably, have maintained current settings.

She, when I saw her, looked very good, in fact, best I've seen her

for a long time, but we know that she is very vulnerable.

No-one else in the hospital, I think, is on this ventilator.

Her spare vent is broken

and so is been sent downstairs for a repair,

so if, if any of her equipment goes wrong we don't have a lot of leeway.

If anything happens in the immediate future,

then she's going to have to be, we're going to have to maintain her up here with...

Bag her until she goes back.

Yeah, but I think we're going to have to manually use like

the air's tepees and bag her and then bring her back downstairs as soon as we can.

My personal opinion is,

if she deteriorates on those settings then she needs to go back to PICU.

For the, to switch onto their ventilators.

What are you going to do?

We have a tracheostomy tube in now that has a cuff.

-I don't think you ever had a cuffed tube, did you?

-No.

-You just had a normal one.

Respiratory consultant Colin Wallis

looked after Maisie's mother, Rachel, when she was young,

but he's finding Maisie's case far more difficult.

There you go.

He's increasingly concerned that Maisie may never get home.

At the moment, we are at the absolute maximum

of our technological expertise.

We have nowhere else to go.

Maisie is now 100% reliable on technology to stay alive.

We are now down to having invested so much in one child,

we've got to keep going.

We're not in a position where we can do anything else,

but with a very uncertain outcome.

Intensive care sees many children

with long and complex medical histories,

who arrive in critical condition.

Millie Staplehurst is a four-year-old girl

who's had severe medical problems since birth.

This morning, she arrived suffering from septic shock

and multi-organ failure.

Millie Staplehurst, early morning admission.

She had liver and small bowel and pancreatic implant in November 2008

and she had a rejection of the liver transplant in 2009.

On top of that she had, er,

multiple brain abscess, that was in April of 2011, so too many issues.

Ventilator requirement was quite significant,

pressures of 34 over ten, 100% oxygen with

the sats of 85 for the transport.

We need to ultrasound this belly.

We need to know if there's anything from a transplant point of view

that we need to do.

It sounds like she's had quite a lot going on in her head.

-OK.

-So...

-Do we have a head scan, CAT scan?

-No, it's not there.

She's literally come in the front door.

Millie was born with a condition where her bowel was unable to absorb

the food needed to survive.

And this tube's been in for a while, has it?

She's had several major surgeries

and has spent most of her life in hospital.

That's the second tube

she's had in, she's had that in for quite a while.

When was it last changed?

Similar time to when she had her central line,

probably about four months ago.

Three years ago, she had a liver, small bowel and pancreas transplant.

-Since then, she's had major complications.

-Hmm, it degrades.

She's here because of septic shock, hmm,

an infection that's causing shock and causing all her organs to fail.

The most important thing is

to identify the source of the infection.

The difficulty is we may not find the source and because

of the bacterial infection sometimes you get a lot of release of chemicals

in the body and that has already, that cascade has already started.

So, even if you treat the infections,

sometimes you can't stop that, um, snowball effect.

So far, she's on a lot of support

and there's very little evidence that she's picking up yet.

The intensive care team are struggling to control Millie's infection.

Consultant Paula Lister is concerned that there may be

further problems associated with her transplants.

Paula is trying to establish

whether there is any point in putting her through intensive treatment

if it isn't going to give her a real chance of survival.

Hi, thanks very much for calling back.

I'm one of the PICU consultants, and Millie was transferred to us,

this morning at about 7.00, 7.30am.

I didn't really have a feel for where, where we were,

in terms of her difficult, complex history,

and the fact that she's out of short-cuts,

and she may need to have a re-transplant,

but can't be re-transplanted because of her cardiac problems,

which can't be fixed. Is that, am I right, or..?

It's just that, you know,

I've got my back against the wall here and,

it would just be nice to know...

I'm just trying to get a whole picture of what's been going on

with this girl, and I'm getting,

just trying to find all the information out.

She's tremendously sick, on a huge amount of support.

Does, is that his mobile?

Hi, this is Paula Lister on PICU.

Could you please give me a ring about, our patient,

Millie Staplehurst?

But if, if her history is very complicated

and they had actually been thinking about moving towards palliation,

then I don't want to be pushing this and putting her through an awful lot,

if that's not in her best interests to do.

March, OK.

Hiya. I'm Doctor Mok. I'm one of the ICU consultants.

I've explained to Mum earlier, and I just wanted to come and update you

about what's happening with Millie.

What do you understand so far to be her problems?

She's septic, having an infection inside, and a bleed line

and obviously it doesn't help when

she's had so many different problems, really.

You've hit the nail on the head. Er, at the moment,

she's really quite sick, she's on our most powerful ventilator,

and we may also need to support her heart,

so, quite a lot of organs are not working very well at the moment

and needing a lot of support.

At this stage, it's really difficult to know which way she's going to go.

We obviously want to take the line out,

because if that's the source of the infection, until you take it out

she's not going to get better.

-Her oxygen level was quite low as well, still?

-Yes, yes.

-Yeah.

-You've been through quite a lot with her haven't you?

-Yeah.

-Yeah.

She's a fighter though. So hopefully she'll be OK.

We are talking about life and death in this child.

I've now been about two hours on the phone,

and we're potentially talking about

withholding treatments from her

because it is not in her interests to do them.

My understanding is that there was some discussion about

possibly going towards palliation,

and I just wanted to try and clarify that before we pushed this hard.

Brilliant. Thank you very much. Thanks a lot. Bye.

Mitral valve needs replacing.

They're worried that she might need a long term anticoagulation,

she's had two previous haemorrhages, she's still got aspergillosis,

so she's going to need another liver, bowel transplant.

They were talking about heading towards palliation,

but hadn't talked about that to the parents.

I don't think she'll manage to get onto the filter,

so I put a DNR on. They're going to get the line out now,

and we'll see where we are in a few hours.

Probably the best thing is for you to tell me

what you understand, and then I can fill in the detail around it,

because then I know what you understand and what you know.

Well, that she's on the oscillator, but it doesn't seem to doing,

she's on 100% oxygen,

and it's not, her sats are still sitting at low eighties,

and that her blood pressure is low,

and I remember you saying that, the other lady said,

or he said about putting her on the other machine that pumps the blood

around your body, or something.

She's certainly had a very complex and complicated history,

and from her intestine and liver point of view,

they seem to be thinking that she's going to need to be re-transplanted,

and that her current situation can't go on.

There are a lot of complications with that,

and what the team hadn't said to you, but they've said to me on the phone,

is that they are, they have been wondering whether

all of these things added up together,

puts her in a position where actually she may not be transplanted.

Because her heart won't take it, and her brain won't take it,

which then puts me in a situation of having a very, very sick girl

that I'm having to do an awful lot to, to pull her through,

and whether that's the right thing to do in consideration

of everything else that's been going on.

I'm not sure that we can fix this.

At the moment she's on some morphine to keep her comfortable.

Just as long as she's not in any pain.

Or as comfortable as possible.

Absolutely.

Cos I know she's travelled a long road...

I don't think we can do, we can fix this, OK?

-I'm really sorry.

-Yes, OK, OK.

There are children that we, we can't help,

and all we can do is support them and, you know,

TV series and things, people go to intensive care

and they always get better.

People who are resuscitated, they always spring back to life.

So, the myth out there is that all of this machinery is going to make

children and adults survive, whereas, actually, it's not.

What we try to do is to create a situation where parents

have some time to come to terms with the fact that their child

is not going to survive, and most of the deaths that happen

on intensive care in PICU here, are because we've withdrawn,

because the parents have come to understand that there is,

the child is just not going to make it, they're not going to heal,

they're not going to get out of intensive care.

As medicine moves forward, children with very complex conditions

are becoming increasingly dependent on technology to keep them alive.

Parents often become accustomed to their children

needing intensive care, but with each new admission,

a child's chances of pulling through diminish.

Ceri-Ann and Lisa have spent many months in Great Ormond Street,

with their daughters, Annie and Franceska.

They are together again on intensive care.

We had a good stint at home - four months - and she's been really well,

but you just... It's part of Franceska,

it's part of our life,

it's what she does, so, like you say,

you don't get used to coming into hospital,

or used to being in intensive care, it's just your life

and you just have to go with it. You've got no choice.

You know, it's not winter, it's bronchiolitis season,

and hey-ho, they're, our kids are generally going to get it,

aren't they, and then to get a chest infection,

we tend to be here, you know, and I think the scary part is

they go so fast, don't they?

One minute you're telling someone they're not well,

and they're saying, "chest is clear,"

and the next day you're in blue lights,

flying up to Great Ormond Street, so it's, it's that fast, isn't it?

It's so quick. You know, Christmas Day, she was fine,

and from then onwards, she's just gone, donk.

Franceska is Ceri-Ann's only child.

She has profound cerebral palsy,

and a severe curvature of the spine, called scoliosis,

which is crushing her lungs,

and making it difficult for her to breathe.

She gets around in a wheelchair, and when she's well enough,

attends her local school for children with severe learning needs.

But each time Franceska is admitted,

the team must ask whether it is still in her best interests

to continue aggressive treatment.

Next is Franceska Christie, who's an eleven-year-old,

who is known to the unit.

She's got quadriplegic CP, she has contractures,

and quite a bad scoliosis.

A seizure disorder, and she's got recurrent colonisation

with a multi resistance Pseudomonas,

and she's on home oxygen and has chronic lung disease.

Wow. That's pretty amazing, isn't it?

OK. Oh, that must be so painful.

Although she's got obviously quite bad restrictive lung disease,

she was intubated.

We've now got her exuberated. She's now on Optiflow,

the plan is to try and wean that off overnight.

I haven't been able to do so, she had a bit of

a increased work of breathing, tachypneic.

I have to say you did very well to get her off.

That's very impressive.

OK, so we're going to re-engage

with palliative care, before discharge?

-I think we're going to need to, discuss a sort of escalation plan.

-Yeah.

-For the future.

-And her main carer?

-Is her mum.

And Paediatric, Colchester, are they..?

Colchester, yeah.

Her mum's very involved and engaged and knowledgeable.

OK.

Franceska requires a large amount of equipment at home.

She has 24-hour care, is fed through a tube into her stomach,

and needs oxygen to help her breathing.

The dilemma for the team in these cases,

is whether technology is supporting her quality of life,

or beginning to have negative effects on the patients,

as well as their families.

We're developing a population of children,

who are technology dependent, and as you cross one technology hurdle,

for example, home oxygen,

it doesn't seem like such a big hurdle,

to then cross the next hurdle which is,

"oh, they'll just come home with a central line,"

and the next hurdle is, "well, you've got a central line,

"let's just put up some intravenous fluids,"

so, incrementally these steps are made,

until you actually see that children have become

incredibly institutionalised,

parents have become incredibly institutionalised,

and it isn't until you hit intensive care,

where the child's life is often in danger,

where you start to really see the impact of all of those technologies,

and you can start asking the questions,

"is this the right thing to be doing?"

OK, OK tell us about today.

So, today, respiratory wise, we had a little bit of a blip.

While on intensive care, Franceska is ventilated

through a tube in her windpipe.

The team tried to remove it yesterday,

but she wasn't able to breathe on her own.

The more times they replace the tube,

the less likely it is she will be able to breathe for herself again.

There was a right upper lobe collapse on yesterday's X-ray,

and that doesn't look like this now.

The tube is OK and she has that serious curvature scoliosis.

I hope that this time it's because

she's just blocked off that right side,

in which case, if it's this, we'll sort it out,

but obviously each time we do this it will get weaker.

Quick as we can, OK, and maybe try again tomorrow.

You think that's the problem?

Well, it's something we can easily sort out.

The only way of finding out is -

when it's not there, can she manage without a tube? Simple as that.

-It's not rocket science, is it?

-Yeah, I know.

When we've got a patient in a bed covered in tubes and wires,

it can sometimes blur your vision a little bit,

and somebody like Fran, actually, you know,

if you saw her at home, and mum and dad will tell you this,

she's really smiley, and she's happy, she's got a loving family,

it's difficult to see that at the moment,

but that's why it's so important to listen to the parents,

and you know, they know their children better than anybody.

A week later, Franceska is still struggling to breathe for herself.

The team have called a meeting with her doctors to decide what is best.

If she makes it through intensive care,

it is likely she will need even more technology at home,

and the team are questioning whether this is the right thing for her.

Talking to the parents this morning, I got the impression

that they understand she has a life-limiting condition.

They're keen for her to be treated, to support a quality of life,

but they don't want her to go through unnecessary suffering,

and I kind of think if there was an on-going need

for increased ventilatory support,

it would have to be something that would be revisited with them.

I would have to have very careful discussions

about tracheostomy, because I would really question

whether that would be valid.

-Have you seen her chest X-rays? It's the most extraordinary...

-Yes, yes, yeah.

..Deformity.

And that will get worse and there will be further impact

and she will become more and more restricted.

What you really witnessing is a zero reserve,

no ability to cope with any insert, whether it be a little bit of fluid,

an abnormal sodium, a small chest infection,

and she will be in trouble.

There's no reserve there. No pulmonary reserve.

I think it's important that they leave here knowing

that this is the course that this is likely to take, in all honesty.

It's only a matter of time before there'll be some complication,

and Franceska has so little reserve that, actually,

it could be devastating, in terms of outcome for her.

'It can be quite overwhelming,

'with the amount of doctors that are'

looking after your child,

and she's in their hands, and you lose a bit of control, really,

you know, coz you think, "er, it's quite scary."

I think it's going to be quite tough,

because obviously we know Franceska's poorly,

we know her scoliosis is severe,

that, obviously, she relies on just her one lung, to keep her going.

So, you know, but hopefully

they'll listen to what we want, as parents,

and what we think's best for Franceska,

and we can come to a happy ending.

What we all want.

-We met in clinic.

-Yes, we have, yeah, yeah.

It was about four years ago and I was amazed to see how well she's done.

-She's done well.

-She has.

But what I think is really, really important is to recognise

that we are at the end of a respiratory reserve here.

There's little things we can do to help, but we have to recognise when

we've done as much as is reasonable to.

What I would hope for in this time

is that we get her back onto oxygen.

-Hmm.

-And she can go home on oxygen.

-Hmm, hmm.

-So that, I think that should be our plan for now.

-OK.

-But we're going to have to recognise that this could happen again.

-Yeah.

And then we need to have some way of thinking about

what we might do in that situation.

One of the options is the possibility of using a mask,

we use the term CPAP, or BiPAP, and this is possible.

It's not easy and it would be quite hard work for you,

but if you felt that it was in her interests to explore that,

either ourselves or Addenbrooke's could do so.

Yeah, I know. It's not hard work. I would do it.

-Well, I appreciate...

-You know.

And I have long since given up and judging what parents can do

because they always amaze me, what parents can cope with.

-So there's no way I'm judging what you can cope with.

-No.

-But I'm giving you the option.

-That's great.

That if you felt that this is too much for us as a family

but in particular that if this is too much for her,

then I would accept that completely.

-But my feeling is we should give her a chance.

-Absolutely.

I haven't got any other children,

-I've only got Franceska so, you know.

-Yeah.

We might be going home soon.

Dad's got to go back to work.

How did you feel after the meeting?

-Good, actually.

-Yeah.

-I thought it was going to be a lot harder.

-Yeah.

But actually it was, they were all for her

and what they could do for her to get her home

and having them things in plan, definitely, so yeah,

-I do feel...

-There's been some progress been made?

-Yeah.

It's like something's just been lifted -

just relieved that everything is going in the right direction

and that everything's in place, should we need it.

So yeah, it's good.

If the parents want to take on the responsibility

of non-evasive ventilation with all that it entails,

and she's been successfully established

onto non-evasive ventilation,

then that's a burden of care that they would have to take on

and commit to taking on - that's a huge thing,

that's a huge thing, not only for them but also for Franceska,

who you're asking to sleep then every night with a big mask on her face

and a big machine blowing air into her every night,

which is no small undertaking.

Maisie Harris has been off intensive care for a week now,

but she still stops breathing regularly.

Staff are keen to keep her on the ward

but they're having to breathe for her several times a day manually,

with a bag attached to her breathing tube.

They're struggling to cope.

Already today we've had to manually ventilate her about seven times,

so it's, from a nursing perspective, she's a very scary child

to have on the ward.

She's on such high pressures that we would have refused, by now,

any other child.

It's just because Maisie is, has to be maintained on those pressures

in order for her to stay alive,

otherwise then she would have to live a life on intensive care.

She does have a quality of life, you know, when she is stable,

but it's, she has less of that quality when she's more unstable.

We want to be able to play with her, get her out into the chair,

do reading with her, do some physio with her,

but at the moment that's making... It's not really happening

because she's needing manual ventilation

so we need to physically bag her more times

than we are getting to play with her.

Maisie, what's the problem?

That's it. All right, baby.

Don't go blue again, babes.

All her mouth and tongue and everything else

went sort of a bit of a navy blue, grey colour, which means that she,

totally her airways collapsed and she couldn't get any oxygen anywhere

so essentially what we call it is bagging.

She shouldn't have to have that done eight times a day.

As a, as a human being she shouldn't have to have that done.

Yesterday she had quite a bad day in that she had about nine episodes.

She'd go very blue, become apnoeic, they'd have to bag her.

Her CO2 would rise to say, 10, 11.

She did have one overnight.

Yeah, one overnight and one occasion in the day where there was,

she was fast asleep and did it without,

not a cough, retch, anything - she just went navy blue and needed it.

A very precarious situation we're in.

We are just holding on and if, if it wasn't for the intensity

of nursing care being delivered here, she would be back in PICU.

And we have nothing else we can change, that I can think of.

From a nursing point of view, we're managing but just,

and it has to be a senior member of staff

or a senior five with support to look after her,

because we're manually ventilating her.

You can't use a bag or a mask, it doesn't work,

so it's, it's, if it gets much worse I mean, I don't know

how much longer we can cope nursing intensity wise

cos at the minute it's taking a senior to look after her

on every shift, day and night.

It's difficult, cos they are protective of the ITU beds.

They do understand but they've got everything else to look at, so.

They don't want to keep bouncing back and forth

because you get down there and she's playing. She recovers so fast.

I think mum still thinks it's like she was when she was younger,

but I don't think she realises that Maisie's much worse.

Yes, I think seeing the mother when she was younger,

Maisie is a lot worse than she was.

So I'm afraid, we're in for a long haul, you know,

there's no quick fix and we have to be honest that,

that there could be a collapse that we don't really turn round well

on the ward and the parents will have to be warned

that there is also the possibility that we may have an event

from which we can't resuscitate her.

Because she does go into cardiac very easily.

Hi, hello.

Hi, there.

Cos one of the big aims was to try and get Maisie home.

-Mm-hm.

-And this is proving tricky.

We're just not getting there with Maisie, you know,

and at the moment we're managing to keep her out of intensive care

but it's, it's not easy

and so this is a bit of a step backwards

-in terms of getting her home.

-Yeah, I know that anyway.

-Yeah?

-Yeah.

-You see that?

-She can take as long as she likes.

-Huh?

-She can take as long as she likes.

-Yeah.

As much as I want to get home,

I just want her to get better, to be honest.

Hmm, but at the moment they're happening every day, you know.

Mm-hm.

And we're going to keep going

and we're going to keep trying out those bags, you know,

doing the bagging, and, and working at it, but it is becoming difficult.

What we need to do is see if we can manage on this machine,

because if we get to more complex machines to keep a child alive,

then it becomes almost impossible to send them home on those machines.

She always has had something wrong, but she'll be all right.

Everyone is trying to do their best for Maisie,

but her current instability is putting immense pressure on the ward staff.

I'm not sure if they've grasped how at the edge of our expertise

we are in managing Maisie.

Without hope we have nothing, right?

And so we have to cling onto hope and we're going to stay hopeful,

but in my heart I am rather doubtful that we're moving in a direction

that is going to be favourable for Maisie in the long term.

The question of resources and how much resources are being soaked up

by one patient is a very difficult issue

and it's something we wrestle with at this hospital,

but in a way it's what Great Ormond Street is about.

This child needs intensive resources.

It may work, it may not,

but she's not going to get it anywhere else very reliably.

Maisie's airways collapsed again this morning

and the team have been unable to get her stable on her ventilator.

They've had to manually bag her repeatedly.

Intensive care consultant, Ruchi Sinha has come to the ward

to try to get Maisie through this crisis

without having to send her back to intensive care.

So the last time she went down to PICU was a week ago.

When was the last time? About two weeks?

-OK, and it was the same thing again?

-Yeah. This is what she does.

OK. Maisie sometimes does this.

She does need like higher pressures,

probably because of her malacia,

but actually what I want to do is try and get her over it

by putting her on higher pressures up here on the ventilator

and see if we can manage up here on Badger because what we,

we don't really change much by taking her down to PICU.

We take her down to PICU and increase her pressures

and then she comes back here again

and we keep moving her to and forth from PICU by changing,

just for changing her pressures.

Oh, all right.

What I did was, when we were bagging her

she was needing pressures of 40 on 18 and she wasn't sinking

but she was alert and responsive and her CO2's 10, pH 7.3.

I just didn't want to take her down to PICU straight away

because it seemed like when we were bagging her, we were managing to...

-If she's got enough...

-Yeah, exactly.

Maisie's airways have suddenly collapsed.

Again, the team are having to breathe for her.

She does this. Normally take, give her a few higher peeps on the bag.

Just looking at her pupils just now.

This is what she does on a daily basis.

She'll cough and we put her back on the ventilator.

If she's settled, she's not too bad.

Shall we take this opportunity to suction and then we know she's...

It's all right, it's going to come up.

And er, that's the only thing.

I think she's going into vagal...

MACHINES BEEP

She's opened her eyes.

There you go.

Hi there, Maisie.

But now it's, it's prolonging every single time now.

She looks better and her heart rate's come back to her baseline.

Maisie had another episode later in the day

and eventually had to be moved back to intensive care.

Consultant Christine Pierce is questioning whether it is right

for Maisie to keep being readmitted if she continues to deteriorate.

Is it worth looking at how many ICU days...

in total, she's had?

-Yeah, I agree, she's been home, she's never been home.

-No.

-She's what? A year and a half.

-Er, no, she's a year old.

A year old. And never been home?

More than that I think, how many days on ICU has she had?

Would it be possible for somebody to look at that?

Because I just, I just really worry about the whole thing to be honest.

The difficulty is she has a treatable condition.

Her mum has congenital hyperventilation syndrome

-and tracheomalacia is potentially reversible.

-Hmm.

But if we're a year down the line

and you know, it would just be interesting to do the numbers.

But she does not arrest but semi arrest with all these,

multiple times and one time she, you know,

she may not be able to be opened up again.

That's the problem, every time we've brought her back she seems worse

and we've needed more pressure to open her back up again.

Cos it has been now, a year, and we should just do the numbers,

you know, how long has she been on ICU? How many days outside ICU?

What are we achieving and, and then sit down and talk about it.

It's about point nine seconds.

We run an acute service in this hospital

so there are children all over the country who come here

who have reversible diseases

who can then go back to their local hospital, so that's an acute bed.

Clearly this child has a right to life as much as any other child.

Their demands, children like this on the state,

on our costs,

are huge compared to the faster turnaround

of a more stable child.

So we have this child and other children who will now occupy beds

for a much more protracted time in terms of cost,

and health economics and that awful term bed-blocking is raised.

And I don't know what the answer is but our priority is to bring more

children in who are reversible

and who have curious diagnosis which we can do here.

The intensive care consultants are worried

that they are not making progress with Maisie.

Colin Wallis wants to ask the surgical team

if there is anything they can do to help her.

We presented Maisie here before but we're bringing her back again

because we are really stuck with this child.

We have these moments of just complete shut-down of the airways

which are getting increasingly difficult to manage

and on last Friday we, she probably arrested

every three hours for a 12-hour period.

PICU not unreasonably says something has to happen here.

We can't continue like this.

It's just too vulnerable.

And so we've, we've been discussing options which are to do nothing,

in other words, say this is as much as we can manage...

..or possibly introducing some form of stent

which just will give enough support to stop these events from happening.

But we're very stuck here because there's no effort

to try and resuscitate herself

in terms of increased respiratory effort.

So if I'm playing, not devil's advocate

because it seems to be nothing else,

it seems like this is futile because I, I don't think

putting a stent in that single airway

is going to make any difference to, for the malacia in the bronchi...

..if she can't drive her ventilation.

Then, OK, it's complex in that the mother has the same condition.

Without the malacia.

Without the malacia, correct.

And, and it would, it's quite difficult at this stage

to say there is nothing more we can do.

But I would be astonished if she got better after stenting but if,

for the sake of the family's, particularly the mother's anxiety

that we hadn't done enough for her child,

that might be what's required in order to say we've tried everything.

I think it's quite important

-that we don't do things that we feel are futile.

-Yeah.

But I don't think the volume of these patients we see,

we can be 100% sure and if the mother has the same condition,

-you can understand why she's so reluctant to accept that.

-Yes.

Maisie is having her airways scanned

to see if she would benefit from surgery.

But the softness is too far spread to make an operation worthwhile.

The team can do nothing but hope she improves on her own.

We can do a lot technologically, but we do question sometimes

whether we ought to be doing it.

Every now and then a child will come in, you save them from death,

but you get stuck halfway through that recovery phase

and you plateau there and they are now stuck on this ventilator,

stuck on technology.

You realise you are stuck in this situation

when it's now become almost too late to stop,

because there's been too much time invested,

there's been too much hope

and it looks like there's too much to lose by stopping.

Franceska Christie has not been able to return home as everyone had hoped

and is still on intensive care.

She's now been here for 21 days,

five times longer than the average patient.

She has a chest infection and is unable to breathe without support.

The longer she's on intensive care,

the more difficult it is to get her home.

And last but not least, we've got Franceska Christie.

She was established yesterday on nocturnal CPAP,

which was planned to come off this morning

and she did not tolerate to come off the CPAP,

she de-saturated down to the mid-80s and severe work with breathing

so we left her on CPAP and in addition to that,

she spiked another temperature.

So she needs another chest X-ray, please, today.

Can we re-culture everything again?

We've re-cultured everything.

I haven't started antibiotics because it was a one-off temperature.

But something's not quite right because this morning

she didn't manage to come off CPAP.

Hello. Good morning.

You didn't want to come off your ventilator this morning, did you?

Are you seeing me? I'm not sure you are. Are you?

You're closing your eyes now.

Can I have a little ears, please?

She de-satted down to 80.

It's all right, sweetie. There you go. That's not so bad.

Hmm, she's got lots of creps on that side.

Let's just get a chest X-ray.

Colin Wallis has been called in again

to review Franceska's lung scans.

Big dilated bronchi, squashed up in the left side.

She's mostly living on her right lung.

He still hopes that she will be able to go home

with night-time ventilation.

The team are worried she might be too unstable.

My anxiety is that if she keeps doing this with the fevers and stuff,

-I'm not sure we necessarily are going to stabilise her.

-Yeah.

And we were looking in a little more detail

at her lung structure itself and it's not great,

and it might be that if we get to a point over the next few days

where we're not ready for it,

we have another discussion with the palliative care team

about where to go.

They're very concerned about her quality of life,

so I don't think they would want her to be in hospital.

-And that's what you picked up?

-All this is to try and get her back home.

Yes, yes, and I think that should be all of our aims, to do that.

-And not necessarily strive for perfection.

-Yeah.

When kids become sick enough to need intensive care and when they,

when they come here with complex, pre-existing conditions,

and if that happens on more than one occasion,

I think it's our job to sort of flag up that maybe this is a time

that we need to start thinking about

the end of life for these children.

Quite often before then, it's not something parents want to consider

and frankly, a lot of the medical teams don't want to either,

because they've had a long relationship with children.

But those discussions have to be had.

So since we last chatted,

things haven't gone the way that we hoped for Franceska.

No, no.

The bigger question really is where we go from here.

I'm very worried that this heralds a new period in her overall condition

and that, as we discussed, her reserve is poor,

her disease is progressive and there will become a point

where we're going to actually need to do more for her and in the future

a point at which it's inappropriate or unfair to do any more

than what we're doing.

And it really looks as if she's now at the point at which,

-at the very least, she's going to need night-time support.

-Yeah.

And as Colin has said, that needs to be established

so that she's in a steady state.

My worry is that we won't be able to establish her

onto night-time respiratory support in a stable way.

If at the end of the weekend we're at, we've found that

we've been unable to establish that for her,

we need to have a think about longer term,

what's in her best interests and revisit where we're going.

-Does that sound reasonable?

-Yeah.

-Yeah.

-So she's quite poorly, isn't she?

-Yes, yeah.

Are there any questions you have about anything that we're doing?

No, I think you're doing everything, you know, what you can,

and you know, key thing is, you know,

obviously finding out where the infection is

and just trying to see if we can establish her,

stable enough for her to have the CPAP overnight and have it at home.

-You know, enjoy what time we have got, you know.

-Yeah.

But obviously we're not silly.

We've always said we'd never let her suffer or be in pain.

I think it's tremendously brave of you to say that.

It's in one respect much easier for us cos we've,

we've not known Franceska for all those years.

I never forget how important it is for mum and dad at the bedside.

Over the weekend, Franceska has defied expectations

and managed to stabilise enough to leave intensive care.

That's good.

And you're feeding and you're not using oxygen at night time?

Sometimes she's having the odd litre through it.

It all depends on her really, you know.

Hmm, and what oxygen do you have at home?

I have up to five litres at home.

We've had a conversation with your local paediatrician

and she is aware that you may now be in the community

with CPAP and IV fluids, and she is OK with that.

That's good news.

I think this is all very big,

a major step forward because it does mean we're now in a position

where we can consider going home.

It's going to be hard work and especially at the beginning

as you're getting used to things.

But she's my only one and I'm very lucky,

I've got lots of people around me, so you know,

I'm lucky in that sense, you know.

As I've said when we had our other meeting, there's very little reserve.

She's got nowhere else to go and nowhere to fight this thing

but we can keep things going like this

and we can keep her happy and she's having a good life,

and you're OK with things, we can keep going.

-I will.

-OK.

-Thank you very much, thank you.

-Bye.

-See you in a bit. Bye.

-Lovely. Thank you.

As long as it was in her interest and she was benefiting from it,

and obviously wasn't causing her any pain or making her suffer,

then I will do whatever it takes

and I will go home with whatever machine,

whatever equipment and do whatever I need to do.

Going home!

It's probably about three or four times I've been told, you know,

"This is it and there's no more we can do."

And you know, even when I left my local hospital

when she was being ventilated,

it was discussed whether ventilation was the right thing for Franceska

and obviously me and her dad was like,

"Yeah, we've got to give her that chance."

And if at this moment in time, if someone was to send me back,

back to intensive care, I'd be like,

"Yeah, you ventilate her, you take her back and you fix her."

There is this tension and dilemma as to what medicine can offer

at the maximum, at its peak and what people think is appropriate.

You know, do you have ten heart/lung machines you can buy

or one case that's carried and looked after for two years?

But those are huge ethical questions

to be answered by, you know... They're not answerable really

in our structure, in our society, so we carry on.

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