Episode 1 Beautiful Lives

This programme contains some strong language

On a beach in South Wales, where waves lap the shores and seagulls cry,

children can be heard playing, singing and laughing merrily.

This is Ty Hafan, a place where the families of children

expected to die young learn to live life to the full.

Butterflies are seen everywhere in Ty Hafan Children's Hospice.

A metaphor for the short, yet beautiful lives that the charity help to create for the children.

When a child is so unwell that they're not expected to live

into adulthood, they turn to Ty Hafan.

Referred in a time of need, they're in search of care and support.

The hospice helps often over many years to fulfil every potential,

and at the end of their lives,

they're there to provide support, care and love.

A brave teenager addicted to life

and a family touched by warmth and kindness in their darkest hour.

These are stories of humanity shining through in a time of adversity.

Unlike many people's preconceptions,

a children's hospice is not just a place where young people and children come to die.

SHE SQUEALS

LAUGHTER

-Lizards.

-Lizards?! Come here!

Ty Hafan is more than a warm atmosphere. Hand-printed walls

and beautiful surroundings, it's an ethos that encourages living

life to the full, whether at the hospice itself or in the family home.

The reason I have this little block on top of my shelves,

it says, "Don't count the days, make the days count."

Because I think so many people just go through life wishing away...

days and weeks,

and to me it seems like they just go through it with their eyes shut,

like they don't experience anything.

I think, because of my condition, in a way, I'm sort of forced to

make the most out of every day and I don't say that in like a cheesy way.

I genuinely do get up in the morning and think, "Right.

"What do I really want to do today that I can do?"

Leave that on the pile and I need to go and get some bits now.

So everybody watch out because I'm reversing out.

Today, Amy Claire Davies has invited all her friends

and family to join her on a trip to the park.

Ty Hafan have arranged for her to plant a tree -

number 163 on her bucket list.

What have you drunk? I didn't know this.

My bucket list is my list of... I think it's 240 things at the minute,

that I want to do in my life before I kick the bucket, as we say.

So the full name is The Before I Kick The Bucket List.

I kept thinking of things I wanted to do, but I realised

I was never doing them, so I had a little notebook

and I'd jot them down and say,

"Right. I want to go for a ride in a speedboat and I want to own a Porsche,"

or stuff that for me would be really difficult.

I've said that I'd like to travel around the world,

but again that would be quite difficult,

because people don't like having me on a plane in case I keel over

in the aisle and they have to do something about it.

-We have one bucket list.

-Who did you ask out on a date?

Nobody from school, just to make it clear.

GROANING

-Everybody say, "Rottweiler!"

-Rottweiler!

Amy is Steve and Caroline's only child, but today they've got

their hands full with an army of school mates that have come to support her.

It's a happy occasion. She's putting something down on her...

It's another thing down on the list, something she wants

and we all want that for her.

-It's nice to share that moment with her.

-Yeah.

I'm liking the matching outfits.

Ty Hafan's been a big part of Amy Claire's life

since she was referred there in 2009,

but it became clear that there was no known cure for her

-and her school friends hear all about the place.

-How are you? Smelly.

It is a bit scary, because you hear that hospices are for people

who don't have much hope and it's a place for people to die,

but Ty Hafan is more like an oppurtunity for children to have more of a life.

Thinking about it, when you said like it's not much hope for kids,

-but Amy Claire, she's got a lot of hope going for her.

-She's a fighter.

-She's always there and we love her.

Ty Hafan helps her so much as well, it gives Caroline and Steve a break.

It's really good for her because she gets to do some much there.

It's much better than hospitals, more homely.

Oh! Get down there!

Amy Claire's illness is a mystery.

Move your bum down there, everyone!

No-one knows why her body systems are closing down.

But it's left her in constant pain

and in need of round-the-clock medical care.

He's planting a blossoming cherry tree today,

which will for ever look over the park...

Standing by Amy's side, as ever,

in all that she does, are her parents Caroline and Steve.

..For everyone she meets and in our case, a beautiful, wonderful daughter.

A couple of us were thinking that I should just say this.

Most people have a week after they're dead.

I thought, "Why have that when I'm not dead? Let's have a party while I'm here instead."

So I'm just going to read a short poem and say a few words.

The poem's called In This Short Life.

In this short life, there only lasts an hour,

how much and how little is within our power,

I chose that poem because it's all about how much is

within our power, obviously,

to have an amazing life, to live your life to the full

and I think that's something really important,

that I want everyone to learn from the bucket list.

I'd just like to say thank you to everyone who's come today.

It's a bit overwhelming to see everyone all in one group,

but it's amazing to know I've got a lot of support behind me.

Thank you very much for coming.

APPLAUSE

I wanted to plant a tree because I wanted to do something that

everyone would be able to see and it would be like a part of me was there,

I'd done that and there's a plaque there with your name on it.

I like the way you've got me a big clog! Oh I missed!

LAUGHTER

It was just really lovely. A lovely ceremony, really, really nice

and it weren't sad at all, so I don't know why I'm crying.

It was really, really lovely.

So we're going to go and have a cup of tea now, and recover.

I don't think I would be me. SHE SOBS

Sorry, I don't know why I'm crying.

Just because they're amazing.

They're the best.

I wouldn't be who I am if I didn't have the friends

and family that I have.

A major issue for all of Ty Hafan's families

is the vast amount of care their children require

often given over a period of months or years without a break.

To help with this, the hospice offers regular respite throughout their child's life,

giving families from all over South Wales

a rest from their duties and allowing them to just enjoy being parents.

The responsibility for the child's wellbeing is taken over

by the trained staff of the hospice.

The parents and siblings can also stay,

or they can take a rare opportunity to do other things.

Today, an old friend is in for a short break.

This is Ashley, Ashley Jenkins.

You OK? You're a bit sleepy today, OK.

Are you going to say hello to me?

-Yeah?

-SHE LAUGHS

I knew I'd get a smile eventually. I knew I'd get one eventually.

All the girls are waiting for you. Shall we go and find them? Shall we go and find them?

17-year-old Ashley is mad about girls, football, and Top Gear.

Hayley Mason of the family support team has known Ashley and his parents

since shortly after Ty Hafan opened their doors 12 years ago.

-How's he been?

-As well as can be expected.

Whilst pregnant, mum Nicola was affected

by an extremely common virus, similar to the cold sore virus,

In most cases it's harmless, but Ashley was one of the unlucky few

and it caused severe brain abnormalities, leaving him

profoundly deaf, unable to speak and suffering regular seizures.

He has his good days, he has his bad days

and when he has his good days, everybody knows.

SHE LAUGHS He's quite happy and everything.

He's normally smiling and full of the joys of spring, as they say.

But he won't let me put his shoe on at the moment.

You've got cheeky smiles today, haven't you?

For a boy like Ashley, who seldom gets an opportunity to go outdoors,

an Easter egg hunt in the grounds is a rare treat.

-Look, there he is! There's the rabbit.

-Oh, there's the rabbit!

Oh, Gosh!

Today, like many days,

the beautiful, tranquil gardens at Ty Hafan

are being taken over

by a marauding mass of screaming children and staff,

and nobody is left out.

THEY LAUGH

For some of the parents here today,

if they wasn't in Ty Hafan they'd never do an Easter egg hunt,

because they wouldn't have the opportunity

because our children perhaps don't go to schools that do that.

It's pretty special for them.

Well, Ashley I think won the Easter parade.

BOTH: Yay!

-Look at that.

-Oh, look at that!

-Are you going to sleep?

He's not impressed today, is he? I'll leave him there.

Suddenly, but quietly, Ashley suffers a seizure,

a period of intense abnormal brain activity.

It's a difficult thing for step-dad Steve to witness.

Painful. Very painful, because you can't do nothing.

You want to help him, but you can't.

It really, really hurts.

'He's come out of hospital about three or four weeks ago,

'because he was having seizures of two and a half hours,'

an hour and a half.

And they were quite...

He was even quite frightened in them.

And to watch him being frightened

is hard to watch as well, on his face,

because he's very scared, very anxious.

Yeah, he's coming back round now, he is. So...

'Sometimes with the seizures,'

a lot of children can end up in intensive care as well.

At the moment, Ashley hasn't,

but there's been quite a few times where it's been quite close there. But...

Which is heart-breaking to watch as well

and watching him go through the pain afterwards, as well.

-Daddy push you down, yeah?

-Get you in bed and push you, yeah?

-OK?

-Daddy'll give you cwtches.

-Shall I put you in bed and cwtch you?

-Yeah.

He'll have cwtches with Dad now.

AMY CRIES OUT IN PAIN

Shhh.

Pain is a massive issue in Amy's life.

She takes 28 different drugs every day,

including the some of the strongest pain-relief drugs available.

'I have pain all the time,

'which is probably quite hard for someone to understand.

'But I've got used to it...

'and so we call this pain that I have all the time background pain.'

So we use the fentanyl patch

to, like, help control the background pain.

And then the paracetamol and the oramorph

are for what we call breakthrough pain.

OK, are you off are you?

Life is a constant blur of coming and going for Caroline and Steve,

who both work part-time,

as well as tending to their daughter's complex medical needs.

Soon, Amy will take a short break at Ty Hafan,

which will give her parents a chance

for their first night away for many years.

It's really hard for people to understand, I think, that we are...

We are basically full-time carers, as well as being parents.

So we are full-time caring, full-on. We never, ever stop caring.

Nobody comes along and says, "Would you like to?"

That doesn't happen. It's not a choice you make.

And it's like any other parent -

you don't get an instruction book for looking after a young person like Amy...

and it's really hard.

What happens if you unclamp it before it's screwed in, Amy?

-Puke.

-I throw up through my tube all over the...

It's like when a hosepipe is let go of...

..and it has happened before.

When their doors first opened in 1999,

all of Ty Hafan's work was done within the building.

Over the years, they've evolved to fulfil the needs of families,

and now do much of their work reaching into people's homes,

learning about their lives

and tailoring their care accordingly.

Today, Hayley's off to Abertysswg in the Rhymney Valley

to visit Ashley Jenkins.

Ashley is fanatical about Everton Football Club.

-Oh... Crash!

-THEY LAUGH

Mum Nicola struggled for many years on her own

to bring up Ashley and his brothers and sisters

until step-dad Steve came into their lives 8 years ago.

Coming to a family, you know, with just normal kids, is hard enough.

And, you know, when I met Ashley,

Nic said to me, like, you know,

it's up to you if I want to get involved or not.

You know, she didn't force me or nothing.

And, like, I wanted to know as much as I could,

as much as I could care about him and love him...

And the more I got to know him, the more loving it was,

and rewarding it was.

I knew him when he was well and...

and we just bonded straight away.

I've learnt his crafty ways and how he is.

He's have wrapped me round his finger, cos every time...

If I go to the toilet in the middle of the night,

he'll pretend to cough or he'll shout, so I'll go into him.

And he'll play me up and I'll go in and in,

and then I'll get so knackered I'll tap Nicola and go,

"You'll have to look after him." She's only got to tell him once and that's it, he listens.

And I think, "You bugger!" NICOLA GIGGLES

Ashley - he is fab.

He's such a cheeky little man,

I've known him for about... 12 years now,

since he was a little dwt.

And now he's a young man, maturing, going into the adult world.

'But he's quite a poorly young man

'and we're having to have quite detailed discussions at the moment with his family

'about future treatment,

'and where we go from here, really, with regards to his conditions.'

Is he out for the count?

Rough night.

-Did he?

-Two big seizures.

-Oh, love him, he is flat out.

-Yeah.

Would you say they're different seizures to the ones before?

Yeah, they're different again. He's twitching with his shoulders and everything.

And, his nails went blue, his tongue went blue.

We had to give him oxygen as well.

-Oh, love him.

-So he's wacked out again.

-No playing today then, Ash?

-No.

-Oh, we'll leave him to sleep it off.

-Yeah.

-Leave him to sleep it off.

No-one knows how severe Ashley's seizures are,

but they are now happening more frequently and lasting longer.

-I can see him going in again.

-Can you?

-Yeah.

It's the length of the seizure, you can't...

I wouldn't want him to have them more regularly than he's having them. 45 is just too...

-Is he waking up?

-It's too much for him, Nic.

-I know.

-He's in seizure, is he, again?

-Oh, no.

Where's your clock for me to time it, hon?

Hmm?

It's difficult to gauge,

but it seems his health over recent weeks is deteriorating rapidly.

Waking up from his sleep.

Is he having a seizure because he's waking up, or is he waking up from the seizure?

-He's waking up with the seizure.

-His eyes...

-They're bloodshot as hell, they are.

And his pupils...

I'll just go and get the oxygen, just in case.

For Ashley, seizures can be life-threatening.

His breathing becomes shallow,

and Nicola and Steve know all too well

they need to be on hand with emergency medicine.

Just a test us, is it?

The little ones lead to the big ones then, tonight, don't they?

-Is that what he's been like, not having long in between?

-Yeah.

-Yeah.

After a few minutes, the seizure is over,

and Ashley is left exhausted.

Over the course of her career in Ty Hafan,

Hayley has supported dozens of families

up to, during, and after the death of their child.

It's becoming clear to her

that it's time to consider making plans to support the family

should Ashley die.

Are you holding my hand?

'The reason that we feel that Ashley is...

'perhaps coming to a stage where we want to be discussing end of life things with his parents'

is because he's not quite the same, he's lost that little spark.

And for us, that gives us an indication that perhaps something neurologically is deteriorating.

It is part of his overall condition and it's something that we expected to happen,

but for us, over the last five or six months,

we've noticed a marked deterioration.

So we feel these discussions are warranted now for Ashley, sadly.

It's not every day a Bentley roars up the Ty Hafan driveway.

They've pulled some strings

and have managed to bring a special visitor to stay, in some style.

Bucket list item number 24 of 250.

You're going to get one of these on Mobility now, yeah?

-Was it good? Did you enjoy?

-Amazing.

-Yeah.

-Fantastic.

Amy is in for a short break, and for the first time,

she's staying without her parents.

I've just been in a Bentley from home to Ty Hafan

and it was amazing, and I want one.

If anyone's watching, "Can you buy me one?"

Before Steve and Caroline leave,

they need to go through Amy's specific medical needs

with the trained care staff.

These are all Amy's medication.

She's on, I think, roughly 25 tablets a day.

That one's out of her emergency kit.

Our house, our kitchen, is like a chemists.

If she's had six consecutive hourly doses,

nobody can give the seventh without advice.

It's having confidence in the people looking after.

You know they know her and they can look after her well.

Amy's happy. That's the main thing,

if she's not happy somewhere, we're not happy to leave her.

A hospice is not a hospital.

Here the focus is on treating the individual, not curing the illness.

They have a team of professional nurses and care staff

that make aim to keep the children comfortable,

pain free, and as happy as possible.

So during Amy's stay, she can chose to do what she wants, go shopping

or to the cinema, or even tick off a few items on her bucket list.

A taste of the independence that other teenagers take for granted.

Darkness often brings a time of agony for Amy.

But with the care team by her bedside,

her first night away from her parents is no worse than any other.

Mam and Dad have gone on holiday to North Wales.

I think that's the first weekend away from each other

we've had in... probably a good few years.

Probably about four, five years.

I was, like, a bit worried about it.

I was trying not to think about it, but actually I've been fine.

And I think if there was somewhere I'd want to be

when my parents were away, I'd probably want to be here

because I know, like, there's loads of people

who can look after me if something does go wrong.

And I've got loads of people for cuddles anyway

if I can't have a hug off Mam or Dad.

Amy's first stay on her own has been a success,

and she hopes to return again later in the year.

In the meantime, she'll sit her GCSEs,

determined to make plans in defiance of her uncertain future.

Hayley's preparing an end of life plan for Ashley,

who she's known since he was a toddler.

An end of life plan is a guideline for the all the professionals

and family members involved in the care of a child

who's expected to die.

Doctors, health workers and, most importantly, the child

and their family, can outline decisions

on what they would prefer to happen as the condition deteriorates.

They aim to give a child what they call a "good death."

It's just, um...

I don't know, I don't know if I can do it.

If I lost him I'd lose a lot, a really lot, like.

You know, it would obviously affect us all but, you know,

just have to start off, start rebuilding again, isn't it?

I'm just going to do basically what's best really for Ashley

in the long run and then deal with my emotions afterwards then.

So I just run with what's happening at the time and then afterwards,

I sort of deal with everything when it's sort of over.

Like I said to you, I've got to start building up

my own personal barriers inside my head, you know.

Cos...

Nothing will always prepare you for it, like,

but if you can set up something, it helps,

like, in the long run, like, you know?

Cos you've got to be strong for other people

as well as yourself, like, haven't you?

Today, Hayley needs to speak to Nicola, Steve,

and older brother Josh to learn their wishes and fears

surrounding Ashley's death.

It's never an easy conversation.

I know this is going to be a difficult discussion.

Probably with lots of tears. But that's OK.

If you want to stop at any time, then just say.

And we can stop, have a cup of tea, have five minutes break

or we can stop altogether, it's entirely up to you.

-I'd better go and get tissues ready.

-I've got some in my bag.

-I know you well!

-I know!

If Ashley was to deteriorate,

and if he was to have what we call an acute deterioration,

so if he had a respiratory or cardiac arrest,

have you thought about what you would actually do at that time?

-Everything short of ventilation and intubation.

-OK.

Are you happy with that decision, then,

that we wouldn't start cardiac massage

and we wouldn't give mouth to mouth?

-I'm happy with that.

-That's the right decision, OK.

If a child dies at home

and they haven't got an advanced care plan or pathway in place,

it's seen as a sudden and unexpected death.

So what happens then is that very often an ambulance will be called

and if the child has died then the police have to be informed

because, obviously, to the ambulance crew,

it's a sudden and unexpected death

and then the police are called to the house and...

in the occasions where I've worked with them on it,

they've been, you know, been very sensitive

but they've obviously got their own jobs to do,

so they have to investigate.

And also, without a plan in place,

the children will automatically get resuscitated

and taken to hospital and it's very much then out of the parents' hands

because it's down to the clinicians that are dealing with the child

as to what treatment they see fit and they may not always know the child,

they won't have the notes perhaps in A&E.

So, by doing the plans,

we can kind of address those issues before there's a need.

And what we will be asking you to do is to let us know

-when you just needed time alone with him.

-Yeah.

Cos we don't want to interfere,

we don't want to be in there with you all the time.

We want to support you,

but you need time as a family as well, to say your goodbyes.

We'll be guided by you.

I'm sorry, I don't mean to upset you.

All right?

It's, like, where the consultants have said

he'd never live past his first birthday and stuff like that

then I've sort of gone through different scenarios

of different things in my head over the years.

And a couple of times when he's been in A&E and everything

and they said they don't think he's coming back

and then he's popped his head up and laughed at us, which is Ashley.

I think that's just the thing with Ashley, we expect it every time

because he's done it a couple of times.

You get a bit complacent with him, he's going to do it every time.

But I know something's telling me

that it's not going to be this time that he's going to come back

so I normally go with my gut instinct and stay with that.

With the plan now in place, the family can rest assured

that whatever the future holds for Ashley,

their wishes will be known...

a source of comfort when the time comes.

I've been involved with families

where the children have died in hospital, at home and in the hospice

and there's such a big difference to the support that they get

and the choices that they can make.

We had a young lad in here just after Christmas

and he was in hospital on a ventilator

and we knew that he wasn't going to pull through.

So the parents decided it would be best for him

to come to the hospice to die,

because we'd known him for a couple of years.

And he came and, in a way, it was so lovely.

I know that's awful to say talking about a child's death

but it was so beautiful, because he had his mum... Sorry,

his mum and his dad and all his family around him

and even little things that we did that made a difference to them.

They were planning a big family party with fireworks

and when he was taken ill, they kept saying to him,

"Oh, we'll have your party, don't worry,

"we'll have it when you come out."

So when he came to us that day, they took the ventilator off him

and we pushed his bed up towards the window

and he was just there with his family, cwtched in,

with his fireworks going off, surrounded by all the love

that his family could give him and his dog at the end of the bed.

And after we finished the fireworks, within about half hour he died

and I thought that was just so beautiful for them

and it was what they wanted.

And as difficult and emotional as it was for us

that's the difference that we make.

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