Children's Hospice True North

Will we read you a story? The Little Mermaid?

There are more than 1,300 children and young people with

life-limiting and life-threatening conditions in Northern Ireland.

For many of these families,

the children's hospice is the only place they can turn to for support.

Some people have an idea that a children's hospice

is always about the last phase of the child's life, and actually

the support that we provide is quite often for a longer period of time.

It could be for years rather than months.

Every year, the hospice cares for more than 300 families,

including children who have reached the end of their lives.

He had the best send-off from here that anyone could have asked for.

The hospice also gives a much-needed break

to the parents of children who need 24-hour care.

You know, we don't know how long we're going to have Natasha.

While she's here, you want to give her the best of everything and you

want to give her a good quality of life, you want to keep her happy.

And you just want to love and care for her as much as you can.

This is the story of the families whose

lives are touched by the dedicated team at the children's hospice.

Right, missy.

Six-year-old Natasha requires round-the-clock care,

and her parents have had to adapt their home to accommodate her.

Today, Natasha and her mum, Natalie,

are preparing for a much-needed weekend away.

Natasha is going up to the children's hospice for holidays,

and then Mummy and Daddy and Reuben's heading on up to

Portrush for a few days just while Natasha's in the hospice.

There we go. Where are you now? Are you having a wee look?

This is the first in a long time that I have actually left Natasha

and went away for a few days.

Normally I would leave her up

but I would go up and visit her while she's in.

So this time I won't be there, but I have set up Skype on her iPad

so I can Skype through and talk to her. SHE LAUGHS

You'll see, when she goes in through the door of Horizon House that

she's totally happy, and the wee legs and arms will start to go

because she knows where she is.

Natasha was born at 38 weeks and had to be resuscitated at birth.

Within two weeks, she was diagnosed as having chromosome disorder 18q deletion.

It's a very rare disorder, there's only, I think, five worldwide now

with the form of chromosome 18q deletion that Natasha has, mosaicism.

She's got loads of clothes.

You can't buy her toys and sweets, so I just by her nice clothes instead.

Sometimes I get told off by her daddy cos I spend to much money on clothes for her.

Only last year, she was diagnosed with Pitt-Hopkins syndrome,

and I think it is because it's only became about in 2007.

Natasha was only born in March 2007,

so it wasn't really heard of at that stage.

Right, miss, in we go again.

Her condition basically means she is life-limited.

We never ever know, every parent asks that question - how long? How many years? -

when you're new to it all, but now, through time, you don't think like that.

You enjoy every day, every minute you have with them.

Off we go!

It's just so different, life with a child with special needs.

You have a lot more to think about,

you have a lot more planning to do, a lot more forward thinking to do.

But it's all worthwhile in the end.

Natasha will spend three nights in the children's hospice, Horizon House.

For both mum and daughter, this will be an invaluable break.

Are you coming to see us? Are you coming to see me?

It's brilliant for her, it's like home from home.

They have their own wee rooms and they are well cared for,

and they put Natasha on the baby monitors from the nurses' station

so they can watch her all night as well.

So you're confident that she's safe when she's here.

Are you getting all excited, missy? Are you?

'Feel a wee bit deflated at the minute

'because I know I am going to be leaving her shortly,

'but I'll be OK once I get away and get up the road a bit.'

It's just actually walking out's the hardest bit, saying goodbye to her.

Love you.

'I think it's harder too, now, because we've got Reuben too.

'You feel a bit of guilt because we're taking Reuben to the caravan

'and we're leaving Natasha behind, but at the same time you have to get

'your head around that she's getting a holiday here and she enjoys it here.'

Five-year-old Caelainn was born with a cystic hygroma -

a collection of cysts in his face and neck caused by lymphatic malformation.

Come on!

Caelainn 's condition affects his breathing,

and he has to rely on an artificial airway call a tracheostomy.

Ready? Ready?

DEVICE BUZZES

'Because he had, when he was born, Caelainn had a lot of cysts

'so he had no airway at all,'

so that's why they had to put the trachy in.

It's an artificial airway, so it is,

so that he could do his breathing through his trachy.

He knew he needed suction there, you see. He probably felt it blocking off a wee bit.

-Would he always tell you?

-Oh, yeah. See if it annoys him?

Sometimes he can go without suction and he will cough it out.

All done!

Good boy!

I test it.

You test it? You want to test your suction machine?

OK, you show Mummy how to test it. Is that it?

'With Caelainn , you have to suction, keep that clear.

'You have to keep it clear, else it will end up blocking off'

and he has no airway at all.

So you have to keep it clear of secretions.

Caelainn's baby photos are a reminder of the difficult journey

his parents have been on over the past five years.

That one is of him when he was about six weeks old, he was really bad.

Aye, he was on life support, so he was, in intensive care at the time.

Before he was born I spent a week in hospital,

and then when he was born I had to do an emergency procedure,

and then he was taken straight to intensive care,

stayed there for eight weeks, but at about six weeks he started going downhill,

and at eight weeks then he was brought to Great Ormond Street.

After the operation, basically when they took the masks away,

he basically had his own wee face, so he did.

Going from that there...

He had his eyes open for the first time.

That was the first he had opened his eyes.

This was basically to save his life, basically,

the operation, do you know what I mean?

And we knew there was going to be a lot more after.

He was just in and out of hospital so many times with infections.

He would've had at least one admission a month

up until he was about probably three and a half, maybe, and then started to slow down, you know,

because the amount of treatment and all he got, you know?

But it was just a nightmare.

The day before this we were told the next 24 hours were critical,

so we decided just to get him christened.

I'm going to cry. Every time I talk about that, just...

And look at photos...

Sorry.

When you see your child fighting for his life, it's hard, so it is.

Who are you looking at? Let me see.

Children like Natasha cannot be left alone, and in the hospice

each child gets one-to-one care from a member of the staff.

Natasha really loves all the one-to-one attention, you know?

She would let you just tickle her and play with her all day.

She gets pampered. Don't you get pampered?

This is her wee time to get spoiled, so it gives mummy a break

and gives Natasha a break, something different.

(Have you got wind in there? Eh?)

Northern Ireland Children's Hospice is the only specialist

palliative care service for children who have been given

a diagnosis that they're not expected to live into adulthood.

It costs us about £3 million every year to run the services,

and we get approximately 20% of that from the Government.

The other 80% we need to raise for ourselves.

Some families can become quite isolated.

Their lives quite often will revolve around the care that their child needs,

and so everything in the family becomes focused on that.

The aim of what we're trying to do is support the family,

give them meaningful breaks so that they can continue to do

what they want to do, which is care for their child.

Is that you? Are you ready?

One of the highlights of Natasha's weekend

is a dip in the hospice's hydrotherapy pool.

Her wee swimming suit's perfect.

I find it really emotional being around here sometimes,

because... Especially when...

If Natasha is having a bad day, she'll be so tense, you know?

And then just seeing her in there,

it's like you look at a different child.

It's just something else to watch.

You feel lucky, actually, to see it.

We're just going to give Natasha what's called a flush,

but it's basically a drink of water,

but she can't take anything orally, so it's through her wee PEG.

'At the start I found it very hard,

'but I think if you survive a week, then you're here for life.

'You could fall apart. People leave after a day or two.'

Even, you know... We have newly qualified nurses and they come in and they're like,

"No, too hard, can't do it."

You think you have to protect yourself,

but I don't think you would be doing the job right, you know?

You can't help it.

You fall in love with them, and how could you not, you know?

But...

..you do get really attached, and that's probably the hard part, I suppose.

Get them toes in!

While the hospice provides support and help for families,

it also focuses on caring for children at the end of their lives.

This dual role can be a difficult balancing act for the hospice staff.

It can be very difficult sometimes.

We can have children who are in for end-of-life care

and our focus is for them to have a good death,

to have a peaceful death, but we have also other children

at the same time who are here for respite care.

Respite children are here for a short break to give their family a break,

but the child also has to get a benefit out of their stay, as well.

But for a child who's here for end-of-life care,

we're focusing more on symptom management and making them comfortable,

and supporting that family through that very difficult time.

OK, righty-o, bye.

'Sometimes it's difficult.

'Sometimes you see people go through terrible circumstances

and you think, there, by the grace of God...

it could be me. But I think that...

I think that you can sustain yourself and you can be resilient in that.

-Did you get a phone call?

-Yeah.

-Somebody was looking for you. OK.

'Small things can make you a bit bad-tempered sometimes'

because you are emotionally drained,

but by and large, you realise what's important.

After living with a rare chromosome disorder for 14 years,

Jordan Beattie died in 2012.

His mum Janine chose to spend her last days with him at the hospice.

'When I first had been told about the hospice, you kind of think,'

"Hospice - dull, dreary." And as soon as I walked in the door, it wasn't.

The place stood out. It was calming, welcoming,

and I just knew that this was... This was the place...

I knew that he was going to have a ball here, and I knew that this was the place for him to be.

Jessica was included in everything.

She got swimming with him,

we made memory boxes, her and him did pictures for me.

There's a lot that she has to cherish from here, and memories of things

which was all about our journey here, it wasn't a sad journey for her.

I just wanted to get something that just captured the day

we took those photographs, and it wasn't a sad day,

it was a happy, funny, giggling, laughing day,

not posing or anything.

You know, when you look at your photos and your videos on your phone,

it's sad that I've lost my son, but it's happy to look back

and have such a giggle at some of these videos and photographs.

He's laughing that much... He was having so much fun.

That's him laughing. He had an absolute ball.

Everyone around here was there for you 100%. They were always there.

They accommodated you for absolutely everything.

He had the best send-off that anyone could have asked for.

It's been a long day for Natasha, but before she settles down,

mum Natalie is keen to say good night.

PHONE LINE RINGING

-Who's that?

-'Hello?'

-Hello!

-'What are you doing, miss?'

'Are you lying in your bed relaxing? Will Mummy give you lots of kisses?

'Are you going to have a good night's sleep, miss?

-'Night-night. Bye.'

-Bye.

There we go!

Ah, big yawns - you are tired.

The Hospice Community Nursing Team is responsible for liaising

with families all over Northern Ireland

and assessing their individual needs.

'We have the meetings every fortnight. It's a team meeting where we get together

'and discuss many of the issues that we would encounter in the community.'

We also use them for support, for getting us together and to support each other.

I have a little child in my own caseload, her parents really want to do everything for her,

but to maximise their quality of life with her, they need night cover.

'There are so many complex children out there,'

and you really want to be trying to support them, and support their families,

and you're very limited in the resources that you have.

Well, it looks like there was 21 bereaved families

since the beginning of the year.

The majority of them look like names that are all very familiar to us.

All of us have been involved with them for such a long time.

So...

'You saw we had a list there of children of bereaved families

'that we've been dealing with for a number of years.'

In-house, there's probably been more in-house this year than other years, but...

Yeah. It can be difficult.

Nurse Louise is based in the North West.

Her role is to monitor the needs of the families under

the care of the hospice in her area.

We're going to see wee Bronagh Lavery today.

It's been a wee while since I've seen her,

but she's been in hospital and had a few procedures done,

so we're going to see how she's getting on

and see if there's any way that we can maybe

adjust Hospice At Home to suit her better

or what it is she's wanting now.

Two-year-old Bronagh has a serious heart condition

and has had several surgical procedures.

Despite her complex medical needs, she is making good progress.

Hiya, Connor.

How has she been? Since last time I've seen her she's had her operation.

-She had her operation in July.

-Went well?

Everything went according to plan,

Mr McKellen was delighted with how well it went

and how well she recovered afterwards and how fast we had her home,

and he re-examined her again and he's hoping to do

her final procedure, from his point of view, around Christmas time.

I'm sure it's a big relief for yous.

Huge burden, can't believe that we've got so many steps done.

This year has been enormous for us.

She's pulled herself up to climbing now,

and she's just on the brink of trying to walk,

and everything else is normal,

same routine as the rest of children, so it's been great.

-Big change.

-Big change, yeah.

-You go with me?

-You going with Sinead?

2013 has been a huge year.

I can't believe that she had cardiac surgery in February.

Again, she'll have another one in December, and she's been under

anaesthetic quite a bit this year, and it hasn't really set her back.

That's the part that shocks me the most,

how fast she heals after every surgery she's had or every procedure she's had,

she heals so fast and she's just so incredibly resilient.

With Hospice At Home, I don't know if it's any benefit to yous or not,

we have new staff just started, both of them are care assistants,

-but they will be trained up to do tube feeds.

-OK.

And trained up in Bronagh, if you would be interested.

-That would be very good.

-Something different.

-Yeah.

'The things that Bronagh has refused to lie down to.

'The coughs and colds that we have generally ourselves as adults,'

it's embarrassing sometimes the things we allow to knock us down

or take a day off work.

But she's just absolutely refused, just never allowed it to hold her back.

There we go.

It's just great to see how well Bronagh has come on.

Since she had her cardiac surgery at the start of the year,

she has just come on so much, and to see Bronagh on her feet

and developing so much, so quickly, it's just great.

And as Bronagh gets older, her need for hospice,

she may not fit our criteria, maybe in a few years' time

we'll be able to discharge her, which is brilliant.

They may lose some of the services, but what they gain is so much more.

Do you want juice? Here.

Caelainn is on school holidays,

but he is unable to venture too far from the house by himself.

Any risk of his tracheostomy coming out could endanger his life.

How do you dance like a girl?

SHE LAUGHS

He's mostly in the house or else I would let him out to the garden,

I would sit out there with him.

Every time the weather comes on, he's like, "What's it going to be like?

"Is it going to be sunny?" He loves getting out there.

Once he gets out he will not come in, but I have to be out with him,

you know, cos of the trachy, obviously if something happens or whatever,

I have to be with him.

There was a couple of wee boys a couple of weeks ago actually called for him

and asked could he come out to play,

and Caelainn had to explain, you know - no, he can't, you know?

But hopefully over the summer he'll make wee friends

and they can come into the garden with him, you know?

Can you break-dance? Go, do your break-dance.

SHE LAUGHS

Yeah!

He is a wee entertainer. He is, he is just a wee entertainer.

He's our entertainment, so he is!

In just a few days, Caelainn will have to travel to London

for another appointment in Great Ormond Street Hospital.

He's to get injections into the cyst to try and shrink them down and kill them,

and laser surgery done to his tongue.

So we'll probably be over there for a couple of nights anyway, hopefully.

Hopefully that's all. Yeah?

Well, today Caelainn is in Dinosaur Ward

which is basically where they prep the kids for going into theatre.

Today it will be for sclerotherapy,

which is injections into his face to try and shrink the cysts

around his jaw and around his mouth,

and basically a bit of surgery on his tongue,

a bronchoscope and a bit of laser surgery in round the airway.

So, just hopefully all goes well.

He knows what's coming,

but he just sort of has his own way of dealing with it, so he does.

DAD LAUGHS

-I've none left!

-It's on my head!

16-year-old Tammy lives with her aunt

and is a regular visitor to the children's hospice.

SHE SINGS ALONG WITH MUSIC

# Afraid to tell the world What I've got to say

# This is real, this is me

# I'm exactly where I'm supposed to be now. #

Tammy's got muscular dystrophy limb-girdle.

It's a waste of the muscles.

They break up, all the wee fibres break-up and they become very loose

so they don't have a lot of control, so the muscles become no good.

# Would you lie with me and just forget the world? #

She's lost most of her mobility anyway now,

and now it's just a matter of keeping her healthy.

Her lung capacity has probably gone down a wee bit now,

it will deteriorate a bit more.

These are the years she will probably deteriorate a bit more.

I would like to take pictures of famous people.

-You want to be a photographer?

-Yep.

This is of my second school. That one was on a bus...

Nobody can tell us what's going to happen in five years' time,

in three years' time, we don't know.

We know that she'll gradually get worse,

but how quick, how fast, we don't know.

So we sort of try not to dwell on it and just get on with it, do as much as we can.

Today, Tammy has arrived at the hospice and will be staying for the weekend,

providing a welcome break for both her and her aunt Susie.

When somebody first says to me about going to the hospice,

I didn't know anything about a hospice or what it does.

I thought it was end-of-life and that was it, that's where people went,

until we went up there and realised how important respite is.

You know that you are leaving the child up there

and she's completely happy, and I'm delighted that I have three days

that I can get other things done that I wouldn't normally get done.

She's made a lot of friends,

definitely has made her a better person,

she is not as frustrated or crabbit as she was,

because when you see other people with something similar to yourself,

it doesn't make you feel as bad as if it's just you.

This weekend is organised solely for teenage girls,

and the emphasis is on having fun.

If she gets on my nerves...

You're talking typical teenage girl behaviour.

There's just been a paint fight, the pizzas are coming,

they'll probably get their jammies on and talk to the early hours.

When you are working with teenagers, there's a different level of communication there.

It's how you would if you had your own children.

It's the difference between if you've got a two-year-old and you've got a 15-year-old.

See if you ask to get the glossy hair filter on it, your hair is amazing looking.

This kind of stuff actually does happen all the time!

That's lovely!

What would you like to do this weekend?

What kind of stuff?

'These kids have... Obviously they're here for a reason,

'they've got their complex needs and they need their medication.

'You're having a laugh and you're having fun with the kids,'

but you're still a nurse, you're still working.

You still need to be giving them what they need.

'You get a really good rapport with the kids,

'and you do, you just leave here feeling like you've done something,'

and you do think about it when you're outside of work,

you do think about the kids.

I enjoy their company, I enjoy working with them.

Because they do, they squeeze your heart a wee bit.

In Great Ormond Street Hospital,

Caelainn is being brought to the operating theatre.

Today's procedure aims to improve his condition by reducing

the cysts around his face and neck.

The plan today is to do some injection treatment to reduce

some of the swelling in his face.

We're also going to have a look at his airways

cos obviously he's got a tracheostomy.

We do our best to get that out

and some heat treatment to the lumps on his tongue

to try to stop those bleeding and causing him so much trouble.

It's all about making him more normal, really, to make him

look more normal, to make his tongue look more normal

and hopefully get him breathing without a tube.

The first thing we're going to do is have a look at Caelainn's airway,

you can see he's breathing through a tube in his neck.

We're going to look at the air passage and see how much

of the cystic hygroma is in the airway

and whether there's anything we can do about that.

Most of the disease is in the back of the tongue,

the larynx, the voice box and the trachea are relatively clear.

We've done the airway endoscopy now and the next thing is to treat

some of these lesions on the front of the tongue.

His tongue is covered with little almost like blood blisters

which bleed from time to time

and they're quite common in children with this problem.

We're going to use a low-temperature heat treatment to remove those.

That's the treatment to the tongue done now

and the next thing is Dr Barnett is going to do some injection

sclerotherapy to the bulk around his neck.

So she's going to inject something called doxycycline into the neck

and that's called sclerotherapy

and its role is to shrink down the cyst which is causing the swelling.

So that's all done. All went fine. No problems.

We'll get him back in a few months

and we'll start working on the back of the tongue and the airway,

because I think the next step for him is to try

and get the tracheostomy out and we will only achieve that when we've

made the back of the tongue smaller

and removed some of the bulk from there.

All the problems he's got are things that we have treatments for

and we'll solve although it may take a while.

Health care assistant Emma has recently completed her training

at the hospice and is now fully immersed in her new role.

I know.

I was training with the hospice themselves for four weeks.

I am now out of that period of time,

so it's OK for me to go in and deal with the children myself.

But before that, I had worked for the trust to get...

to gain some knowledge and training before I came into the hospice.

I think we have a tired wee man on our hands this morning!

'I absolutely love it.

'It's nice to feel like you're giving something back and obviously,

'you're helping families have some respite.'

Can you not make up your mind?

'So it's a very rewarding job and you can go home knowing that'

you're doing something good and giving something back.

-You happy enough there, Karen? Feed rate 50.

-Yeah.

And that's how much is to be delivered.

'You wouldn't be human if you didn't get attached to the children.'

It's still resisting.

'Yes, you will get very involved and it is hard at times'

but it takes you, nearly, to get attached,

to be able to do the job to the best of your ability, I think.

We'll get your wee glasses on, darling.

Even though you're sleeping. Sorry, sweetheart.

This is a wee book that after a child has passed away, they provide you

with a page or two or three,

that you can fill with memories of your child.

These are the pages that I've done for our daughter, Amy,

after she passed away.

Amy was born on the seventh of February 2007.

I think it was the next day,

she started showing signs of seizure activity.

The brain scan, in the words of the consultant, was horrific.

So unfortunately, they had prepared us for the worst

um, and did feel that this time, once we turned off life support,

that Amy would pass away quite quickly -

which she didn't and she survived for five and a half months.

Throughout the process, we had felt that it would have been our option

that if Amy was to pass away, that we would let that happen at home.

But as it transpired, actually we came here for a weekend

and Amy actually passed away that weekend here.

But thinking back afterwards, again, that worked out for the best.

Because I can now... Again, it's a personal choice, you know,

I can be at home and not have those memories of home

but at the same time, I suppose, even whenever I come here,

I don't have those lasting memories, "This is the last place I was with my daughter."

Um, I still feel very at home coming here.

Um...

Sorry.

The surgeon came in and spoke to us

and told us everything that sort of needs to be done in the future.

So he does. At the minute he's got his problems with the back of his tongue,

there's that much bulk at the back of his tongue, he's finding it hard

to use his upper airway and for swallowing and stuff, so he'll be back in three months' time

for more surgery done on the back of the tongue.

So it's hard on him just doing each bit at a time.

But it's better than sort of trying to do too much

and putting his life in danger.

Oh, sorry!

It's going to be a very long process in trying to get

the back of the tongue done, cos it's such a vast area.

As I say, as long as things get sorted out and keep him safe,

that's the main thing, so it is.

Three-year-old Oisin has arrayed chromosome disorder which has

led to severe physical and developmental delay.

He was born by...it was a normal delivery.

When he was delivered, they noticed that his foot,

his left foot was bent right back and it was touching his...

Almost touching his shin. They said that he had... What did they call it?

Dysmorphic features.

And I think the hardest thing for me and John was being told about...

that he would have a learning disability, I think

was the hardest thing for us, that he would never speak to us.

To never hear your child talk, it's a lot to take on.

He couldn't tell me how long I would keep him for, he couldn't say

but then, we weren't bothered about that

because no-one knows what life's got in store for them.

People, they kept saying to us,

"You just have to take one day at a time," but it's hard.

Show me. Put it back in. Come on.

Oh, aren't you clever? Do it again.

Because he has developmental delay, it took a while, you know,

for him to smile appropriately at things.

And then we thought about, he might never laugh,

and the first time he laughed, we both cried

and then every time he laughed after that, we kept on crying.

We were crying for ages every time, cos it was lovely to hear him

laughing. And like now, sitting, like he's three, and he doesn't sit.

I would love him to be toddling about the house and having to have

stair gates and eyes in the back of my head that he might be...

his fingers in a plug socket, but he doesn't. He just...

I would love him to run about.

My street's full of little boys and you look at them all playing

and it's different.

Natalie and Oisin often have up to three appointments

a week in the Royal Belfast Hospital for Sick Children.

Oisin is fed through a tube in his stomach and today's

appointment is to discuss a potential replacement device.

Look at that lovely sight. Isn't that just beautiful?

-It's probably one of the best I've seen.

-Oh, OK.

-So it is.

So from that point of view, the tube, this is what's called denuding.

Okey-dokey.

So, there's a number of reasons why we put a button

device into a child and one of the primary reasons is

because that even though they have to go to theatre

to have the PEG-type device removed,

if we put in a button or a balloon device, then subsequently,

they won't need to go to theatre for changing the device.

OK.

Eating is part of the normal healthy process that we do every day

and it's something that we take for granted.

I think that sometimes we tend to not really accept

how difficult it is for a lot of these parents,

trying to get the smallest amount into their child

and in some instances, there is no other option but to go down

the route of enteral feeding, be that a nasogastric tube,

or be that their child has to go for surgery

to have a gastrostomy-type device inserted.

So this win here is a Mickey button. All right?

And this one's a Minnie button.

The Mickey button is a little bit more robust.

It's a little bit of a sturdier device.

'I think Mum is trying her best in a very difficult situation.

'You've got a little person who's got a mind of his own and is'

obviously not going to provide her with the simple normal route.

Right, see you soon.

Like last night, no sleep. He does it the same time every night.

He'll wake from about three

and then he'll only go over again at about seven.

If you're not sleeping, everything becomes heightened, you know,

and everything just stresses you out more.

Oh! Oh, can I keep it?

At home, Natasha's bedtime routine begins with a therapy session

in her purpose-built sensory room.

And when we do that, press "on", put the machine on, and then you just

press "on" again and that's her on her therapy and it vibrates vigorously.

It vibrates her chest vigorously and it means just any secretions

or any phlegm or anything stuck to her chest wall, it all loosens up

and falls off and it's easier for her to get rid of, then.

And this has been a godsend from a chest point of view,

because she was very seriously ill quite often with her chest.

Six times in intensive care on life support and from she's had it,

she has been fantastic.

She says, "It's like a ride in Barry's for me!" Isn't it?

There we go. Ready? One, two, three.

We should be hoisting, so...

Coming up into bed, miss? Ho, Ho!

There we are. Now we have to put a wee sats probe on her.

This is to measure her oxygen and her heart rate overnight.

And it goes on her toe.

If her oxygen levels were to drop,

the sats monitor would alarm to let you know something was wrong

and basically, that goes on over her nose to expand her lungs

during her sleep and also if Natasha was to stop breathing,

which she would do occasionally, that will kick in for her

and it will remind her to breathe.

You just get used to the routine of it, you know. You do it very quickly.

She's on the same medicines morning and night,

so you're so used to her medicines,

you're so used to what you have to get out and use, so...

She gets six medicines and the probiotic at night-time.

Probiotic is an overload of good bacteria, because with

the antibiotics, sometimes it can be very severe on their stomach.

This is her antibiotic, which she's on at the moment.

And then, the Omeprazol. The Omeprazol is another medicine.

It is for the acid in her stomach. This is her iron, from...

She had her operation in January and this one then is her magnesium.

It doesn't feel like you're doing anything out of the ordinary or

anything any different for Natasha, you know.

That's her Epilim. That's for seizure control.

That just connects into her wee PEG as you can see there.

So this is her milk, then. This is what she feeds on all night.

This is her food, yeah. So this is why everything has to be so sterile,

because that's obviously going into her system.

She gets 900ml of milk overnight.

There we go.

See you in the morning, darling.

Throughout the night, Natasha needs constant monitoring

and Natalie has installed CCTV in her bedroom,

so she is instantly alerted to any problems.

I just keep an eye on her and the sats monitor at night

and again here, there's Reuben down below.

The first half of the night is where I can't sleep

and I would be sitting on the phone or just fiddling about.

That's basically the cameras that you've seen upstairs

with Natasha and we can log onto a mobile or iPad anywhere,

either in the house or out and about. It's brilliant.

It's peace of mind. You can come down there,

spend a bit of time together at night-time

when the kids are in bed, have the cameras on, and you know

if anything untowards happens, then it's going to alert you.

Natalie is bringing Oisin to the hospice for a short break.

-Hello.

-Hi.

This is Natalie and Oisin's first visit to Horizon House, so the

team need to know the exact details of his complex medical condition.

OK, so this is just a care plan that we'll be using to plan his care.

So he is fed by a PEG? Yes.

And at seven o'clock in the morning, he gets PaediaSure,

and that goes anything between 100-220ml an hour?

Yeah, because at the minute,

we've slowed them down because he's making himself vomit.

-OK. So have you got it up to 100?

-150.

-150 at the minute.

But never in the morning.

It's a big responsibility doing the admissions but through time

being here, you get to know what you need to ask the parents

and they get to know us and they get

to know what they need to tell us too, so it's just about getting

all that information at the start and putting it on the paper

for everybody who is going to look after him,

especially if you're not going to be there that whole weekend.

You have to try and get everything down.

-Right. Does Oisin take wee seizures?

-Yeah, he does.

-OK. What type?

Do you know what type he takes?

-At the minute, what he's been doing, he would take...stare...like, staring seizures.

-OK.

It's so important to try and get that information down on paper

so all staff are aware what his routine is from the moment

he wakens to the moment he's going to bed and to get the most

out of the respite for Oisin, to make him be able to do all

the activities and enjoy his stay and to let the parents

get a break too, to enjoy their stay, even though it's their first admission.

We always ask the parents to stay on their first admission just

so we get to know the child, we get to know the parents too.

It provides security for us and for them to,

because it's hard to leave your child the first time in a strange place too, so it lets us

look after the child with them in the background,

making sure that we're doing everything right too and it lets the parents get to know the staff

who's looking after the children as well.

# Out with the golden we sew

# And the lower past that crawls... #

The initial decision to accept respite was a difficult decision.

When he was born, he was only...he was still so young

that we weren't accepting that that was our reality.

You feel guilty that you're just palming him off.

At the time, I'm obviously not... It's different now.

I understand now that we need the break in order to be good

parents to him. But at the time, we were just, no, we wouldn't.

We wouldn't accept it.

Are you throwing the ball through there? One, two, three...

Are you going to splish-splash?

MUSIC: "Look Out" by James Vincent McMorrow

I think he loves. He looks like he loves it. So, yeah, it's nice.

It's lovely to see him so happy.

Caelainn is no stranger to the hospice and he comes to stay at Horizon House

around three times a year, giving his parents a much-needed break.

You can't go out. You just cannot go out.

Cos nobody can look after him, only the hospice,

that's the only time I do go out.

-Hello.

-Hi! Come in.

I just love getting him in there and you know, my God,

he's so well-looked after and he loves it.

There's always something for him to do.

One of the best-loved places in the hospice is the art room,

where the children and staff can get creative - and make a mess!

We get allocated a child and then I'm responsible for that child,

so for all their physical needs and emotional needs and their play.

Is it tickly?

I know you've got tickly feet, I do! I'm going to put this on here.

And I lift it up. Oh, look at that.

It's a really good footprint, isn't it?

I focus around play and fun and activities and it's every

child's right to play and have fun, regardless of their capabilities.

-Tell me this, were you driving the Mini?

-Yeah.

Were you in it last night?

It's a very challenging job but it's very rewarding and I have to say,

getting up every morning, I never dread coming into work.

You know, you just feel so privileged working here.

Today is six-year-old Natasha's first day back at school.

Getting her ready in the morning can take up to two hours

but Natalie's mum often provides a helping hand.

She's not used to getting up this early while she's been off school.

But she's going to know all about it now cos she has to get up early.

She's back to school today.

It's her first day back to school in almost two years.

It's a big day for her and it's a hard day for Mummy letting go again after so long

and just being, just having her at home all the time and just letting

the responsibility go onto somebody else for a few hours, you know.

Mum does two nights with us

and some mornings and it's just fantastic

that I have Mum there for the help and, you know,

she takes the pressure off, especially there,

getting Natasha ready and out so early for school, you know.

It means I can get Reuben then ready and that

and get myself organised while she is organising Natasha.

It just makes life a lot easier.

Push, push. Push, push, push.

Well, I've been helping Natalie with her really since she was born.

That's my job now and it's the best job in the world.

One, two, three.

Up we go.

Now last week, she didn't sleep a wink both nights I was here

and I think, you know, "Well, I'm OK, I can go home

"and sleep the other five nights of the week."

Natalie can't. Natalie has to keep going all the time.

She's amazing.

If anybody had told me before Natasha was born, you know,

Natalie will have a child with special needs

and how she would cope, I would have said, not a chance,

because Natalie was a real tomboy and that, herself.

When I see the way she copes with her, she is absolutely amazing.

There we go, chicken.

That's your shoes on.

You have to supply the wipes and nappies and stuff to the school,

so it's just remembering that and then,

obviously her oxygen cylinder as well.

She'll be fed oxygen if she takes a seizure then

and if she has a strop she gets fed oxygen.

An inspiration she is, like, the way she's coped. It nearly makes me cry!

She's fantastic with her.

Um...

Sorry.

Your glasses! Nearly forgot about them, didn't I?

We daren't forget about them.

She's fought Natasha's corner from the word go. Um...

She just couldn't have had a better mummy.

Car keys.

Five-year-old Caelainn is also off to school and the clearing

of his airway has become a normal part of his morning routine.

Oh, you've got to go to work? Are you driving?

Oh, his oxygen, his suction machine, school bag. Trachy box.

Just a lot of stuff, so it is.

Winter is the most difficult season for Caelainn

as the cold, damp weather affects his chest.

His airway needs to be cleared more regularly

and the 45-minute commute to school can be an arduous journey.

It's just until he gets his whole system cleared out, so it is.

It usually takes nearly the whole journey into school for this to happen.

Usually, by the time we get to school, he's all right, so he is.

He's cleared himself.

But trying to deal with all this while you're driving, like,

it is hard, like, so it is.

It depends on what sort of night he has.

He could be only having four hours' sleep and then you're up.

It is, it has its toll on you, so it does.

But your body naturally just knocks itself out, so it does.

We're here now. Back to school.

With Natasha ready to begin her day at school,

mum Natalie returns home with conflicting feelings.

You've got all everything, mixed emotions running through your head.

You're happy that she's gone back to school,

she's getting normality, doing all her activities through the day

but then the same time, you're trying to wrap her up in cotton wool.

You want to keep her at home and keep her well

and keep her away from bugs and infections and whatever else.

She'll love it.

Her silly old mummy sitting here, probably pining for her

and she's in there enjoying it and having fun.

Christmas is a special time for families who use

the services of the hospice.

-# Without it it really feels wasted time...

-#

I'm in Horizon House Hospice and I got to see Santa Claus early.

And he said, "What do you want for Christmas?"

I said, "A 40-inch plasma TV."

But for bereaved parents, Christmas is a particularly difficult time.

It is hard, but you know, it is part and parcel of life

unfortunately, and so, you make it what you want to make it, and we do.

For other families, Christmas is a time to look forward to.

-Where's Santa coming?

-Down the chimney.

-Do you think he'll fit?

With all the presents.

# And it's real for me

# There must be someone who's feeling for me... #

I'm just so looking forward to it this year, you know, because

every other year, she's been in hospital over the Christmas period.

You're really just concentrating on Christmas.

You don't have sort of thoughts of the future.

# Let me feel the love come over me... #

As another year draws to a close,

the families continue to make the most of every day with the help

and support provided by the Children's Hospice.

# Bring me a higher love

# Bring me a higher love

# Bring me a higher love

# Bring me a higher love

# I can rise above for this higher love. #