Episode 3 Children's Ward

Wrexham Maelor, home to one of the busiest children's wards in Wales.

Last year, it treated over 5,000 children.

You get so much satisfaction from these kids.

They're little soldiers,

and they really do carry on playing and smiling,

even though they're not well.

Some of them have to be here, or they would die.

She's not been outside the cube.

She hasn't been outside here, so...

You'd love to be able to take her out in the fresh air

and just have a little walk around with her,

but that's not been possible.

Others leave in ambulances, destined for specialist care...

..but both staff and patients all share a common goal...

I think I'll bawl my eyes out when she walks out of here.

Just to see her walk and stand and not be terrified and fall over.

..to one day go home.

Most children who visit Wrexham Maelor do go home.

You're not having physio any more, are you?

Harry wanted to say thank you.

-Oh, OK.

-He's made a card.

Oh, diolch yn fawr iawn!

Thank you very much.

..but there's one very special lady who's never been home.

You didn't taste that. A little bit more.

Om-nom-nom, is that nice?

Is that nice?

18-month-old Lily, who has Down's syndrome,

has been in hospital since the day she was born.

She was sleeping when we first got here this morning.

She's been awake since 6:15, but she'd gone back to sleep,

and as soon as she gets up, she's like this, isn't she?

She's just a smiler.

It is obviously a very unusual situation

for somebody to be the age Lily is now,

she's coming up for 18 months,

and to not yet have been home.

Babum, babum, babum, babum.

At the moment, Lily's got a little infection

and so we have to take some extra precautions,

and what that means, unfortunately,

is we have to put an apron and a pair of gloves on,

which isn't the nicest thing,

but hopefully it's not going to be forever.

Right, let's go in.

Hello, there. Hello, Lily.

In a nutshell, what you would say

is that she has a couple of problems relating to her heart.

One of which is that she has an unusual situation

where you have raised blood pressure in your lungs,

not the conventional type of raised blood pressure

which is much more common, but one which affects the lungs

and makes it very hard for the oxygen to go from the lungs

into the circulation.

You hold on to that.

Now I'll have a little listen.

There we go.

And she has a second problem with her heart, as well,

which is to do with the structure of her heart -

because not only is it hard for the oxygen to get into her bloodstream,

it's then very hard for that blood to get back to the heart

to be circulated to the rest of the body.

The only way to get enough oxygen to Lily's blood

is through a permanent connection to the hospital's oxygen supply.

Without it, she will die.

It is sad when you hear Lily's story, and, um...

Yeah, it is hard not to get attached but you do...

Like I say, we all support each other and you do...

..you do sort of deal with these things,

and, yeah, do your best for her, at the end of the day.

How on earth could any child be playful and settled with all that?

But of course that's all she's ever known, really, so...

Children rapidly become accustomed to what's always been there.

Lily is just a special little girl,

with a lot of complex needs but she's just a beautiful little girl.

She's a character.

She just absolutely draws you in.

It doesn't matter if it's staff

or whether it's a domestic that's just passing,

she's just got a smile for everybody.

She's absolutely beautiful.

She's a special little girl.

10-year-old Mollie has only been in hospital four days.

Mollie's gone from performing in her dance festival with her dance team

to not being able to sit up on her own or walk.

So, very drastic, in relation to what she can do.

A week ago, she was pirouetting her way through a dance competition,

but, soon after, she started feeling ill.

I felt really rough and really dizzy, pain.

Couldn't get out of bed.

We went to the hospital again,

with the doctors and... they said they thought it was...

What was it?

-Something to do with your balance or something, didn't they?

-Yeah.

-That you needed to go to hospital.

-Yeah.

Such a massive drastic difference in a child.

Nothing sinister has appeared in Mollie's blood tests.

All life-threatening conditions have been ruled out.

Just keep pushing against the pillow.

Doctors are baffled,

but they think Mollie's illness

is most likely due to a very nasty virus.

-..and do it together.

-Yeah.

-Yeah?

Ow. Mummy, Mummy!

-Put me down.

-All right, all right, OK, OK, OK.

In, done. All done.

-No more.

-No more.

Colds are very, very common,

but if you think about viral illnesses,

if you have flu as an acute thing, you know, your head hurts,

your teeth hurt, your nose hurt, your joints hurt.

You know, your whole body feels lousy

and with viral infections, you can get that,

and you may get, when the initial illness has passed,

you are still feeling a part of your body is not right,

is not working properly, and that's all very common for all of us,

but then viral infections can affect the organs of balance,

they can have a widespread effect on the body.

Mollie's been told there's no quick fix.

This is going to take time...

..but for baby Noah, time is of the essence.

He went from being this happy, content, very alert little boy

to...nothing.

And I just...

I can't get my head around how quick it happened, really.

His hands were blue, his feet were blue.

He was really cold, and...

..he just wouldn't do anything.

Basically, his eyes were closed and he was just breathing,

that was all he was doing.

Initially we were thinking that the problem was

that he had a hormone deficiency.

The one we worry about

is something called a congenital adrenal hyperplasia,

which is a very rare but recognised cause of collapse in a newborn -

however, one of the other causes of this

is a thing called posterior urethral valve syndrome,

where the pipes that let the urine drain from the kidney

into the bladder,

and then from the bladder into the outside world, are blocked.

Doctors immediately catheterised Noah,

thus allowing the urine to leave his bladder.

The procedure saved his life.

-Yeah.

-So, when do we have to feed him next?

Well, what Jenna said,

that she's going to try and keep him on three hourly at the moment,

just to see if that pacifies him.

If he takes a really good feed in three hours,

-then we could try getting him off this.

-Right, OK.

-Fingers crossed.

The scary thought was, if we didn't get him here in time,

the doctor said if we'd left it another 6-12 hours

and thought, you know, he's just under the weather...

He could've been a lot worse.

He would have been dead, basically.

Lily, the little girl who has never left hospital,

who is fed through a tube, has yet again pulled out the tube.

What have you got there? You don't like that, really, do you?

No, you don't! No, you don't.

So, Lily has pulled her own tube out today.

They do need re-passing every week to four weeks,

but Lily gets her little fingers under sometimes

and does pull them out,

so that's what's happened today.

So, to know whereabouts it goes in the stomach, you need to measure.

Because Lily's had one before,

we sort of know what length she usually has it at, about 27.

She doesn't like it very much.

-Because she will get a bit upset now when this happens.

-Yeah.

She will cry.

-Lily CRIES

-OK, OK.

-Good, girl.

-OK.

-Good girl.

-OK, darling. All right.

-It's OK.

-Almost there.

-It's OK.

-There you go!

-And you're all done.

-So, it was as quick as that.

-Finished!

-All done!

-You can have a cuddle now.

-Come on, then.

-SHE CRIES

-I know, that wasn't nice, was it?

-No.

-But it's gone now.

Let's take that off. It's gone now.

See, I'm all done now!

-I'm all done now!

-Finished now!

She's thinking, "There's no more, is there?"

No! No more.

For Lily, her nurses have become her family.

Living in a hospital has turned her real family into visitors.

She's our baby. She's...

She's just fabulous.

Now and then I'll have, like, a down day,

like, at first I was struggling,

I didn't know, you know, what to do with her.

I didn't know what they were going to say.

Now, she's...she's come on, better than she was.

Oh, wow.

Aww!

Snow White.

She's gathered up quite a collection

of toys and clothes and bits and pieces, you know,

everybody is so generous with her.

As you can see from the room -

this is all the nurses and the play staff.

You know, her room is beginning to look like a...

I don't know, a Disney wonderland.

She can be a little madam when she wants to be.

-But...

-So, who does she take after?

She takes after the wife.

Thank you!

Because you... When you are on an off day, you can be as naggy as her.

-Everybody can, can't they?

-You know.

-Yeah.

When you're not well, you don't want to be messed with.

You know, you just want to be left alone, sleep,

and get yourself sorted.

Lily CRIES

Oh...!

Rarrr!

Mwah!

Yeah, she's got a scrapbook.

Um...

Like, her own...

Put a picture of Lily on there,

but we've made loads of, like...

There's one, of chalk...

Um...

What else has she done?

One of her hands, which look like ghosts.

Then they did, like, her hands for a flower.

-Oh, that's nice.

-So, they done, like, her fingers.

-Um...

-So, you might have an artist?

Yeah!

In an ideal world, what we want is her at home.

That is all we want.

Ideal world, all we want is for her to come home...

..and this is what we're working towards.

Trying to get her back home with the rest of the family.

As long as her oxygen levels come down,

and she goes back onto normal oxygen, she can come home.

But that's never going to happen.

Shortly after that visit,

the family was told that Lily was never going to get any better.

Unfortunately, the heart condition she does have

are not what we would call static.

In other words, they will actually progress, sadly,

and we have explored with specialists

all possible treatment options,

and, sadly, the consensus is that there are no treatments

which are going to prevent this progressing.

She is on treatments which will slow that progression,

but they will only slow it, not actually reverse it or cure it.

So, sadly that will ultimately lead to her having a shorter life span

than even other children with Down's syndrome.

I was in on the meeting

with our doctors and the cardiology team...

..when they were telling Mum

about this life limit and how bad her heart and lungs were,

and it was really, really difficult, you know,

not to cry in front of the doctors and Mum -

but we're all human after all.

You know, as soon as I got out of that meeting,

I just broke down crying.

It's heartbreaking, but...

..we've just got to give her the best that we can while she's here.

A few days later,

a charity specialising in taking photos of terminally ill children

organises a photoshoot for Lily's mum and dad...

I can't tell you that, sorry.

That's something the doctor will have to speak to you about first

before I say it.

It's always something for the families to cherish,

there's nothing that beats a photo album.

There's nothing at all that's as precious

as being able to look back through all those memories in years to come.

..but despite the devastating news, mum Louise has not given up.

-Yeah.

-Yeah?

Yeah, we've set up all her bedroom so it's all princessy, now, for her.

We've got some photos to do, haven't we, Lily?

You're looking pretty today.

For baby Noah, who has kidney failure,

events have taken a dramatic turn.

Alder Hey Children's Hospital

have requested that he be transferred immediately.

-While you were at lunch, we've got an ambulance...

-Mm-hm.

..ambulance here,

so you guys are going to go to Liverpool in the next few minutes.

Right, OK.

With the surgery, obviously,

-I don't think they'll do the surgery today...

-Yeah.

..and the important thing is to do some further tests,

have a look at Noah's kidneys...

-Mm-hm.

-..and then they'll do the surgery,

sort of, at an appropriate time.

-OK.

-The good news is that his numbers are just getting better.

-Yeah.

-They're getting better, and his kidney function's improving.

That's the important thing.

So, right - so, that's it.

Alder Hey will find out exactly what it is

that is blocking Noah's kidneys,

and then remove the obstruction.

There we are, little boy.

-Are you ready for him?

-Yeah.

Bye, little man!

Wrexham Maelor has saved his life,

but they don't have the expertise to perform the operation.

So, Noah will now have to go 60 miles up the motorway to Liverpool.

Do you need anything?

-No, I've got everything here.

-Yeah?

-Yeah.

You know where you're going?

-Yeah, well, the ambulance does, so I'll follow them.

-All right, OK!

The Geeks, a local award-winning dance group,

have decided to pay their team member a visit.

Two weeks ago, Mollie was competing with them.

Now, the mere thought of standing up makes her dizzy.

I've never seen her lay down so much.

I've never seen her sit still - she's never sat still.

She was walking at, like, ten months.

So, whatever it is, it's got a lot of power -

we need to sort of take the power off and give it back to her, really.

So, in an effort to lift her spirits,

the Geeks are putting on a show in the ward's playroom.

MUSIC PLAYS

# All the time We do it all the time

# We do it all the time We do it all the time... #

I think I'll bawl my eyes out when she walks out of here.

Just to see her walk and stand and not be terrified and fall over

like she has when she's tried.

I feel the lottery will be nothing to watching her dance again.

I want to sit there and watch her be happy and enjoy her friends.

She said to me earlier when I came in, she was really down.

She said she felt sad.

I said, "Why do you feel sad?"

She said, "Because I'm missing all my friends."

ALL CLAP AND CHEER

Picture, girls.

This is the before,

and then the after one will be of you standing, won't it?

-ALL:

-Yes!

-Yeah?

-Yes.

-Yeah?

Or dancing with them.

Yeah! One, two, three.

-ALL:

-Geeks rule!

Mollie, you didn't say it very loudly!

LAUGHTER

Lily's friends are the staff that work on the children's ward.

Come on, then! On here.

Ready? Ready?

Do you want some purple?

Good job it's safe for children, because she's going to eat...

No, no, no!

No, you don't want in your mouth!

Lily probably can't tell the difference

between the staff and her family in some ways,

because the family are doing a very good job, obviously,

of spending as much time as they can here in the hospital,

but, probably, Lily sees the staff here,

the medical staff, the nursing staff,

as much as she sees the others,

and probably, from her perspective,

she possibly doesn't understand that we're not all the same.

You're going to have orange hair, right? OK.

Does it feel nice?

There you are - and again.

We love to be around her, we just love being around her.

When you're there -

I don't know if you've seen it when you've been filming -

people just come in the cube

and just want to hug her and play with her.

It's not so much that we're a family,

but we're all connected to her, that's for sure.

Having Lily on the ward is lovely, and it's lovely to look after her,

it's lovely to see her every day -

but it is hard...

..emotionally, really. It's hard, now I've got seven days off,

I know I'm going to miss her and wonder how she is,

and I'm sure I'll send the odd text checking up on her.

Last one. On that side.

On that side.

She knows what she's doing!

OK, do you want a bit more, then?

If a child is going to have a shorter life,

then you obviously have to try and fit as much

into that life as you can.

Sometimes you have to make decisions about the health care

which allow you to do something

which would hopefully add to that child's enjoyment of life,

but which, if you were dealing with something curable,

you wouldn't do that,

you'd get on with the treatment and leave all of that till later,

and perhaps, for Lily, there won't be a later.

Lily! Oh, blooming heck, I think it's bath time!

It makes us happy, it's nice to see her like this.

This is normality for children.

In school, they do all this - in playschools and things.

-This is lovely, we love doing it, don't we?

-We do, yeah.

She's happy - and you've seen it for yourself.

She just wants to eat it, and paint yourself, as well.

No, it's nice, it does put a smile on your face, doesn't it?

SHE LAUGHS

I'm not sure a lot of people would agree with that!

Look at your face.

She is thinking, "What have I done?"

Oh, look at her!

-THEY LAUGH

-Right, OK.

After ten days in hospital,

Mollie's no closer to a definitive diagnosis.

She's still wheelchair-bound,

and all dad can do is stand back and watch...

I'll hold your pillow and it'll support your neck.

-I'm only doing a tiny bit, I'm not...

-Yeah, you try your best.

Can you push yourself up?

No.

You've got to push yourself up with this hand, as well.

You were really close then. Shall we try again?

-If you squidge your bum in...

-Why?

No, I'm still on here, it's not working.

You lift up a little bit, then,

and I'll lift your pillow up with you.

No?

..but progress is being made, slowly.

-Well done, Mollie.

-Well done.

-Push this chair back.

-Yeah.

Mollie, want to go for a walk?

No? Maybe tomorrow.

-Tonight?

-Tonight? We're going to go for it, are we?

Brilliant, I'll take that.

You're teasing me.

Are we definitely going to try and walk today?

-Yeah.

-Yeah?

-Go on!

-Walk?

-Walk. OK.

-With no help.

-But you can't have the pillow.

You've still got the pillow, though.

So, tomorrow, when I come in, in the morning,

I'm going to find out how you got on.

OK.

And Mollie isn't the only one who's about to go for a walk.

For the first time in her life,

Lily's oxygen levels are stable enough to do something very special.

-What do you think of...

-Her feet!

I don't know if this even fits you properly.

-Yeah, it does.

-Are you ready?

-Gorgeous.

-Are we going for a walk?

-GASPS:

-Shall we go outside?

What do you say?

Yeah, shall we go outside?

Does that sound like a good idea?

Come here, then, monster.

Ooh...

Oh, you're getting heavier by the day.

She's been on aero for months, now,

so she's been restricted to her cubicle.

So, we just managed to get her off it today,

because we want her to have different experiences,

and we thought we'd take her outside

so she can have a bit of fresh air, can't you?

This will be the first time Lily has ever been outside.

Have you got your blankets, as well, so you're nice and cosy?

She's looking at the different lights!

Come on, then.

Done that, have you?

What is it, hey? What's all this?

Where are we going?

It's raining, it's pouring!

Lovely, thank you very much.

Thank you.

What's that?

Is that fresh air?

Look at her face!

Is that fresh air?

Does it feel nice?

Gorgeous girl, aren't you?

How does that feel, Lils?

-THEY LAUGH

-Aw, got a bit of a smile!

Yeah!

Is it really bright?

-Wow.

-How does it feel to be doing this?

I don't know, it's a big landmark, really, for her.

A bit emotional, I suppose...

..but, yeah.

Sorry...

SHE SOBS

It's just nice that we can do this for her.

Bless.

You all right?

You become one of their family in a way.

She's been here for so long.

Oh! Look what you've gone and made me do, eh?

You're just too cute, aren't you?

Yeah.

I got a message just to say that she'd been outside with Katie.

Oh, gosh.

It was... It was unreal.

It was lovely, I actually cried.

I was just so happy to think she'd actually gone outside.

It was raining that day - it was so lovely,

because it wasn't heavy rain,

but she seemed to, like, be blinking,

because the rain was falling on her face.

Oh, my God, it was lovely.

I'm sorry.

There you go, darling.

Good girl.

Was that nice? Shall we go inside now and get nice and toasty?

Lily's first adventure.

Yeah!

After a weekend at home, Mollie is finally walking...

I'm just so glad to see her on her feet, that is amazing.

That positivity -

that you can do it, and facing your fears when it is so scary.

-Keep strong.

-We will.

-Thanks very much.

-Take care.

-Cheers. Thanks, bye.

Disappointingly,

I don't think there's always answers to every single thing,

but I think it's how you go about trying.

..and, after going out once, Lily is out again -

this time with her family.

Hello! Say hello!

Oh, she says, "It's so bright."

THEY LAUGH

"If you get close to this, I'm going to have that," she says.

"If you get too close to me, I'm going to have that."

With the sun coming out a little bit this afternoon,

we thought we'd take her out again, which was lovely -

and Nana and Grandad have actually come with us,

so they've actually seen her going out for the first time in her pram.

So, she's all ready for bed now, she's got her nice jammies on,

and you're going to sleep in a bit, aren't you?

Yes, you are.

You're going to bobbles now.

She knows what bobbles is!

Are you ready? You going to go bobbles now?

Shall we go to sleep?

There we are, that's bobbles.

And again!

Bobbles!

Bobbles.

What do you want for Lily?

A miracle.

Say night-night.

Night-night. Night-night.

Night-night. Blow kisses. Blow kisses.

Aw, are you tired?

Come on, then. Come on, then.

There you are!

She's funny, isn't she?