0:00:02 > 0:00:04Will we read you a story? The Little Mermaid?
0:00:04 > 0:00:08There are more than 1,300 children and young people with
0:00:08 > 0:00:12life-limiting and life-threatening conditions in Northern Ireland.
0:00:16 > 0:00:17For many of these families,
0:00:17 > 0:00:21the children's hospice is the only place they can turn to for support.
0:00:22 > 0:00:25Some people have an idea that a children's hospice
0:00:25 > 0:00:29is always about the last phase of the child's life, and actually
0:00:29 > 0:00:33the support that we provide is quite often for a longer period of time.
0:00:33 > 0:00:36It could be for years rather than months.
0:00:36 > 0:00:40Every year, the hospice cares for more than 300 families,
0:00:40 > 0:00:43including children who have reached the end of their lives.
0:00:45 > 0:00:51He had the best send-off from here that anyone could have asked for.
0:00:53 > 0:00:56The hospice also gives a much-needed break
0:00:56 > 0:00:59to the parents of children who need 24-hour care.
0:01:01 > 0:01:05You know, we don't know how long we're going to have Natasha.
0:01:05 > 0:01:08While she's here, you want to give her the best of everything and you
0:01:08 > 0:01:11want to give her a good quality of life, you want to keep her happy.
0:01:11 > 0:01:14And you just want to love and care for her as much as you can.
0:01:15 > 0:01:18This is the story of the families whose
0:01:18 > 0:01:22lives are touched by the dedicated team at the children's hospice.
0:01:36 > 0:01:38Right, missy.
0:01:38 > 0:01:41Six-year-old Natasha requires round-the-clock care,
0:01:41 > 0:01:44and her parents have had to adapt their home to accommodate her.
0:01:46 > 0:01:49Today, Natasha and her mum, Natalie,
0:01:49 > 0:01:52are preparing for a much-needed weekend away.
0:01:52 > 0:01:56Natasha is going up to the children's hospice for holidays,
0:01:56 > 0:01:59and then Mummy and Daddy and Reuben's heading on up to
0:01:59 > 0:02:03Portrush for a few days just while Natasha's in the hospice.
0:02:03 > 0:02:07There we go. Where are you now? Are you having a wee look?
0:02:07 > 0:02:11This is the first in a long time that I have actually left Natasha
0:02:11 > 0:02:13and went away for a few days.
0:02:13 > 0:02:14Normally I would leave her up
0:02:14 > 0:02:17but I would go up and visit her while she's in.
0:02:17 > 0:02:22So this time I won't be there, but I have set up Skype on her iPad
0:02:22 > 0:02:25so I can Skype through and talk to her. SHE LAUGHS
0:02:25 > 0:02:28You'll see, when she goes in through the door of Horizon House that
0:02:28 > 0:02:31she's totally happy, and the wee legs and arms will start to go
0:02:31 > 0:02:34because she knows where she is.
0:02:34 > 0:02:40Natasha was born at 38 weeks and had to be resuscitated at birth.
0:02:42 > 0:02:47Within two weeks, she was diagnosed as having chromosome disorder 18q deletion.
0:02:47 > 0:02:52It's a very rare disorder, there's only, I think, five worldwide now
0:02:52 > 0:02:57with the form of chromosome 18q deletion that Natasha has, mosaicism.
0:02:58 > 0:03:00She's got loads of clothes.
0:03:00 > 0:03:04You can't buy her toys and sweets, so I just by her nice clothes instead.
0:03:04 > 0:03:08Sometimes I get told off by her daddy cos I spend to much money on clothes for her.
0:03:10 > 0:03:14Only last year, she was diagnosed with Pitt-Hopkins syndrome,
0:03:14 > 0:03:17and I think it is because it's only became about in 2007.
0:03:17 > 0:03:20Natasha was only born in March 2007,
0:03:20 > 0:03:23so it wasn't really heard of at that stage.
0:03:23 > 0:03:25Right, miss, in we go again.
0:03:25 > 0:03:28Her condition basically means she is life-limited.
0:03:28 > 0:03:33We never ever know, every parent asks that question - how long? How many years? -
0:03:33 > 0:03:39when you're new to it all, but now, through time, you don't think like that.
0:03:39 > 0:03:43You enjoy every day, every minute you have with them.
0:03:43 > 0:03:45Off we go!
0:03:45 > 0:03:49It's just so different, life with a child with special needs.
0:03:49 > 0:03:51You have a lot more to think about,
0:03:51 > 0:03:56you have a lot more planning to do, a lot more forward thinking to do.
0:03:58 > 0:04:00But it's all worthwhile in the end.
0:04:02 > 0:04:07Natasha will spend three nights in the children's hospice, Horizon House.
0:04:10 > 0:04:14For both mum and daughter, this will be an invaluable break.
0:04:17 > 0:04:22Are you coming to see us? Are you coming to see me?
0:04:22 > 0:04:24It's brilliant for her, it's like home from home.
0:04:24 > 0:04:28They have their own wee rooms and they are well cared for,
0:04:28 > 0:04:31and they put Natasha on the baby monitors from the nurses' station
0:04:31 > 0:04:33so they can watch her all night as well.
0:04:33 > 0:04:37So you're confident that she's safe when she's here.
0:04:37 > 0:04:41Are you getting all excited, missy? Are you?
0:04:41 > 0:04:43'Feel a wee bit deflated at the minute
0:04:43 > 0:04:45'because I know I am going to be leaving her shortly,
0:04:45 > 0:04:49'but I'll be OK once I get away and get up the road a bit.'
0:04:49 > 0:04:53It's just actually walking out's the hardest bit, saying goodbye to her.
0:04:54 > 0:04:55Love you.
0:04:55 > 0:04:59'I think it's harder too, now, because we've got Reuben too.
0:04:59 > 0:05:02'You feel a bit of guilt because we're taking Reuben to the caravan
0:05:02 > 0:05:05'and we're leaving Natasha behind, but at the same time you have to get
0:05:05 > 0:05:09'your head around that she's getting a holiday here and she enjoys it here.'
0:05:17 > 0:05:20Five-year-old Caelainn was born with a cystic hygroma -
0:05:20 > 0:05:25a collection of cysts in his face and neck caused by lymphatic malformation.
0:05:27 > 0:05:29Come on!
0:05:32 > 0:05:34Caelainn 's condition affects his breathing,
0:05:34 > 0:05:39and he has to rely on an artificial airway call a tracheostomy.
0:05:43 > 0:05:45Ready? Ready?
0:05:45 > 0:05:47DEVICE BUZZES
0:05:49 > 0:05:53'Because he had, when he was born, Caelainn had a lot of cysts
0:05:53 > 0:05:56'so he had no airway at all,'
0:05:56 > 0:05:58so that's why they had to put the trachy in.
0:05:58 > 0:06:00It's an artificial airway, so it is,
0:06:00 > 0:06:04so that he could do his breathing through his trachy.
0:06:06 > 0:06:10He knew he needed suction there, you see. He probably felt it blocking off a wee bit.
0:06:10 > 0:06:14- Would he always tell you? - Oh, yeah. See if it annoys him?
0:06:14 > 0:06:18Sometimes he can go without suction and he will cough it out.
0:06:20 > 0:06:21All done!
0:06:21 > 0:06:23Good boy!
0:06:23 > 0:06:24I test it.
0:06:24 > 0:06:27You test it? You want to test your suction machine?
0:06:27 > 0:06:31OK, you show Mummy how to test it. Is that it?
0:06:31 > 0:06:35'With Caelainn , you have to suction, keep that clear.
0:06:35 > 0:06:39'You have to keep it clear, else it will end up blocking off'
0:06:39 > 0:06:41and he has no airway at all.
0:06:41 > 0:06:44So you have to keep it clear of secretions.
0:06:46 > 0:06:49Caelainn's baby photos are a reminder of the difficult journey
0:06:49 > 0:06:53his parents have been on over the past five years.
0:06:55 > 0:07:00That one is of him when he was about six weeks old, he was really bad.
0:07:00 > 0:07:05Aye, he was on life support, so he was, in intensive care at the time.
0:07:05 > 0:07:07Before he was born I spent a week in hospital,
0:07:07 > 0:07:11and then when he was born I had to do an emergency procedure,
0:07:11 > 0:07:15and then he was taken straight to intensive care,
0:07:15 > 0:07:19stayed there for eight weeks, but at about six weeks he started going downhill,
0:07:19 > 0:07:23and at eight weeks then he was brought to Great Ormond Street.
0:07:24 > 0:07:27After the operation, basically when they took the masks away,
0:07:27 > 0:07:32he basically had his own wee face, so he did.
0:07:32 > 0:07:34Going from that there...
0:07:34 > 0:07:36He had his eyes open for the first time.
0:07:36 > 0:07:39That was the first he had opened his eyes.
0:07:39 > 0:07:43This was basically to save his life, basically,
0:07:43 > 0:07:45the operation, do you know what I mean?
0:07:45 > 0:07:49And we knew there was going to be a lot more after.
0:07:49 > 0:07:52He was just in and out of hospital so many times with infections.
0:07:52 > 0:07:56He would've had at least one admission a month
0:07:56 > 0:08:00up until he was about probably three and a half, maybe, and then started to slow down, you know,
0:08:00 > 0:08:05because the amount of treatment and all he got, you know?
0:08:05 > 0:08:07But it was just a nightmare.
0:08:09 > 0:08:13The day before this we were told the next 24 hours were critical,
0:08:13 > 0:08:15so we decided just to get him christened.
0:08:16 > 0:08:21I'm going to cry. Every time I talk about that, just...
0:08:21 > 0:08:23And look at photos...
0:08:25 > 0:08:26Sorry.
0:08:28 > 0:08:34When you see your child fighting for his life, it's hard, so it is.
0:08:44 > 0:08:46Who are you looking at? Let me see.
0:08:46 > 0:08:50Children like Natasha cannot be left alone, and in the hospice
0:08:50 > 0:08:55each child gets one-to-one care from a member of the staff.
0:08:55 > 0:08:58Natasha really loves all the one-to-one attention, you know?
0:08:58 > 0:09:02She would let you just tickle her and play with her all day.
0:09:04 > 0:09:07She gets pampered. Don't you get pampered?
0:09:08 > 0:09:13This is her wee time to get spoiled, so it gives mummy a break
0:09:13 > 0:09:16and gives Natasha a break, something different.
0:09:20 > 0:09:22(Have you got wind in there? Eh?)
0:09:25 > 0:09:28Northern Ireland Children's Hospice is the only specialist
0:09:28 > 0:09:31palliative care service for children who have been given
0:09:31 > 0:09:35a diagnosis that they're not expected to live into adulthood.
0:09:37 > 0:09:41It costs us about £3 million every year to run the services,
0:09:41 > 0:09:44and we get approximately 20% of that from the Government.
0:09:44 > 0:09:47The other 80% we need to raise for ourselves.
0:09:50 > 0:09:53Some families can become quite isolated.
0:09:53 > 0:09:57Their lives quite often will revolve around the care that their child needs,
0:09:57 > 0:10:00and so everything in the family becomes focused on that.
0:10:02 > 0:10:05The aim of what we're trying to do is support the family,
0:10:05 > 0:10:08give them meaningful breaks so that they can continue to do
0:10:08 > 0:10:11what they want to do, which is care for their child.
0:10:18 > 0:10:21Is that you? Are you ready?
0:10:21 > 0:10:24One of the highlights of Natasha's weekend
0:10:24 > 0:10:26is a dip in the hospice's hydrotherapy pool.
0:10:29 > 0:10:31Her wee swimming suit's perfect.
0:10:39 > 0:10:42I find it really emotional being around here sometimes,
0:10:42 > 0:10:44because... Especially when...
0:10:46 > 0:10:51If Natasha is having a bad day, she'll be so tense, you know?
0:10:51 > 0:10:53And then just seeing her in there,
0:10:53 > 0:10:56it's like you look at a different child.
0:10:59 > 0:11:03It's just something else to watch.
0:11:05 > 0:11:08You feel lucky, actually, to see it.
0:11:19 > 0:11:21We're just going to give Natasha what's called a flush,
0:11:21 > 0:11:24but it's basically a drink of water,
0:11:24 > 0:11:28but she can't take anything orally, so it's through her wee PEG.
0:11:31 > 0:11:34'At the start I found it very hard,
0:11:34 > 0:11:37'but I think if you survive a week, then you're here for life.
0:11:39 > 0:11:44'You could fall apart. People leave after a day or two.'
0:11:44 > 0:11:49Even, you know... We have newly qualified nurses and they come in and they're like,
0:11:49 > 0:11:50"No, too hard, can't do it."
0:11:52 > 0:11:54You think you have to protect yourself,
0:11:54 > 0:11:59but I don't think you would be doing the job right, you know?
0:11:59 > 0:12:01You can't help it.
0:12:01 > 0:12:05You fall in love with them, and how could you not, you know?
0:12:07 > 0:12:08But...
0:12:09 > 0:12:14..you do get really attached, and that's probably the hard part, I suppose.
0:12:21 > 0:12:22Get them toes in!
0:12:27 > 0:12:30While the hospice provides support and help for families,
0:12:30 > 0:12:35it also focuses on caring for children at the end of their lives.
0:12:35 > 0:12:40This dual role can be a difficult balancing act for the hospice staff.
0:12:45 > 0:12:47It can be very difficult sometimes.
0:12:47 > 0:12:49We can have children who are in for end-of-life care
0:12:49 > 0:12:54and our focus is for them to have a good death,
0:12:54 > 0:12:56to have a peaceful death, but we have also other children
0:12:56 > 0:12:59at the same time who are here for respite care.
0:12:59 > 0:13:03Respite children are here for a short break to give their family a break,
0:13:03 > 0:13:08but the child also has to get a benefit out of their stay, as well.
0:13:08 > 0:13:12But for a child who's here for end-of-life care,
0:13:12 > 0:13:16we're focusing more on symptom management and making them comfortable,
0:13:16 > 0:13:20and supporting that family through that very difficult time.
0:13:23 > 0:13:25OK, righty-o, bye.
0:13:27 > 0:13:29'Sometimes it's difficult.
0:13:29 > 0:13:34'Sometimes you see people go through terrible circumstances
0:13:34 > 0:13:37and you think, there, by the grace of God...
0:13:37 > 0:13:39it could be me. But I think that...
0:13:40 > 0:13:45I think that you can sustain yourself and you can be resilient in that.
0:13:45 > 0:13:48- Did you get a phone call?- Yeah. - Somebody was looking for you. OK.
0:13:48 > 0:13:52'Small things can make you a bit bad-tempered sometimes'
0:13:52 > 0:13:54because you are emotionally drained,
0:13:54 > 0:13:59but by and large, you realise what's important.
0:14:07 > 0:14:11After living with a rare chromosome disorder for 14 years,
0:14:11 > 0:14:14Jordan Beattie died in 2012.
0:14:16 > 0:14:20His mum Janine chose to spend her last days with him at the hospice.
0:14:21 > 0:14:25'When I first had been told about the hospice, you kind of think,'
0:14:25 > 0:14:32"Hospice - dull, dreary." And as soon as I walked in the door, it wasn't.
0:14:32 > 0:14:38The place stood out. It was calming, welcoming,
0:14:38 > 0:14:41and I just knew that this was... This was the place...
0:14:41 > 0:14:46I knew that he was going to have a ball here, and I knew that this was the place for him to be.
0:14:49 > 0:14:51Jessica was included in everything.
0:14:51 > 0:14:53She got swimming with him,
0:14:53 > 0:14:58we made memory boxes, her and him did pictures for me.
0:14:58 > 0:15:03There's a lot that she has to cherish from here, and memories of things
0:15:03 > 0:15:07which was all about our journey here, it wasn't a sad journey for her.
0:15:07 > 0:15:11I just wanted to get something that just captured the day
0:15:11 > 0:15:15we took those photographs, and it wasn't a sad day,
0:15:15 > 0:15:18it was a happy, funny, giggling, laughing day,
0:15:18 > 0:15:19not posing or anything.
0:15:24 > 0:15:28You know, when you look at your photos and your videos on your phone,
0:15:28 > 0:15:32it's sad that I've lost my son, but it's happy to look back
0:15:32 > 0:15:36and have such a giggle at some of these videos and photographs.
0:15:42 > 0:15:46He's laughing that much... He was having so much fun.
0:15:46 > 0:15:49That's him laughing. He had an absolute ball.
0:15:52 > 0:15:57Everyone around here was there for you 100%. They were always there.
0:15:57 > 0:16:00They accommodated you for absolutely everything.
0:16:00 > 0:16:05He had the best send-off that anyone could have asked for.
0:16:18 > 0:16:22It's been a long day for Natasha, but before she settles down,
0:16:22 > 0:16:25mum Natalie is keen to say good night.
0:16:27 > 0:16:29PHONE LINE RINGING
0:16:29 > 0:16:32- Who's that?- 'Hello?'
0:16:32 > 0:16:35- Hello! - 'What are you doing, miss?'
0:16:35 > 0:16:39'Are you lying in your bed relaxing? Will Mummy give you lots of kisses?
0:16:39 > 0:16:44'Are you going to have a good night's sleep, miss?
0:16:44 > 0:16:46- 'Night-night. Bye.'- Bye.
0:16:48 > 0:16:49There we go!
0:16:51 > 0:16:54Ah, big yawns - you are tired.
0:16:59 > 0:17:02The Hospice Community Nursing Team is responsible for liaising
0:17:02 > 0:17:05with families all over Northern Ireland
0:17:05 > 0:17:07and assessing their individual needs.
0:17:09 > 0:17:13'We have the meetings every fortnight. It's a team meeting where we get together
0:17:13 > 0:17:18'and discuss many of the issues that we would encounter in the community.'
0:17:18 > 0:17:22We also use them for support, for getting us together and to support each other.
0:17:22 > 0:17:27I have a little child in my own caseload, her parents really want to do everything for her,
0:17:27 > 0:17:31but to maximise their quality of life with her, they need night cover.
0:17:31 > 0:17:34'There are so many complex children out there,'
0:17:34 > 0:17:38and you really want to be trying to support them, and support their families,
0:17:38 > 0:17:41and you're very limited in the resources that you have.
0:17:41 > 0:17:44Well, it looks like there was 21 bereaved families
0:17:44 > 0:17:46since the beginning of the year.
0:17:46 > 0:17:50The majority of them look like names that are all very familiar to us.
0:17:50 > 0:17:54All of us have been involved with them for such a long time.
0:17:54 > 0:17:56So...
0:17:58 > 0:18:01'You saw we had a list there of children of bereaved families
0:18:01 > 0:18:04'that we've been dealing with for a number of years.'
0:18:04 > 0:18:10In-house, there's probably been more in-house this year than other years, but...
0:18:10 > 0:18:12Yeah. It can be difficult.
0:18:15 > 0:18:18Nurse Louise is based in the North West.
0:18:18 > 0:18:20Her role is to monitor the needs of the families under
0:18:20 > 0:18:22the care of the hospice in her area.
0:18:25 > 0:18:27We're going to see wee Bronagh Lavery today.
0:18:27 > 0:18:29It's been a wee while since I've seen her,
0:18:29 > 0:18:32but she's been in hospital and had a few procedures done,
0:18:32 > 0:18:35so we're going to see how she's getting on
0:18:35 > 0:18:38and see if there's any way that we can maybe
0:18:38 > 0:18:40adjust Hospice At Home to suit her better
0:18:40 > 0:18:42or what it is she's wanting now.
0:18:46 > 0:18:49Two-year-old Bronagh has a serious heart condition
0:18:49 > 0:18:52and has had several surgical procedures.
0:18:52 > 0:18:56Despite her complex medical needs, she is making good progress.
0:18:57 > 0:18:59Hiya, Connor.
0:18:59 > 0:19:03How has she been? Since last time I've seen her she's had her operation.
0:19:03 > 0:19:06- She had her operation in July. - Went well?
0:19:06 > 0:19:07Everything went according to plan,
0:19:07 > 0:19:10Mr McKellen was delighted with how well it went
0:19:10 > 0:19:14and how well she recovered afterwards and how fast we had her home,
0:19:14 > 0:19:17and he re-examined her again and he's hoping to do
0:19:17 > 0:19:21her final procedure, from his point of view, around Christmas time.
0:19:21 > 0:19:23I'm sure it's a big relief for yous.
0:19:23 > 0:19:26Huge burden, can't believe that we've got so many steps done.
0:19:26 > 0:19:28This year has been enormous for us.
0:19:28 > 0:19:31She's pulled herself up to climbing now,
0:19:31 > 0:19:34and she's just on the brink of trying to walk,
0:19:34 > 0:19:36and everything else is normal,
0:19:36 > 0:19:39same routine as the rest of children, so it's been great.
0:19:39 > 0:19:42- Big change. - Big change, yeah.
0:19:42 > 0:19:45- You go with me? - You going with Sinead?
0:19:46 > 0:19:482013 has been a huge year.
0:19:48 > 0:19:52I can't believe that she had cardiac surgery in February.
0:19:52 > 0:19:55Again, she'll have another one in December, and she's been under
0:19:55 > 0:19:59anaesthetic quite a bit this year, and it hasn't really set her back.
0:19:59 > 0:20:02That's the part that shocks me the most,
0:20:02 > 0:20:07how fast she heals after every surgery she's had or every procedure she's had,
0:20:07 > 0:20:11she heals so fast and she's just so incredibly resilient.
0:20:11 > 0:20:14With Hospice At Home, I don't know if it's any benefit to yous or not,
0:20:14 > 0:20:18we have new staff just started, both of them are care assistants,
0:20:18 > 0:20:20- but they will be trained up to do tube feeds.- OK.
0:20:20 > 0:20:23And trained up in Bronagh, if you would be interested.
0:20:23 > 0:20:27- That would be very good. - Something different.- Yeah.
0:20:27 > 0:20:30'The things that Bronagh has refused to lie down to.
0:20:30 > 0:20:33'The coughs and colds that we have generally ourselves as adults,'
0:20:33 > 0:20:37it's embarrassing sometimes the things we allow to knock us down
0:20:37 > 0:20:38or take a day off work.
0:20:38 > 0:20:42But she's just absolutely refused, just never allowed it to hold her back.
0:20:44 > 0:20:45There we go.
0:20:49 > 0:20:52It's just great to see how well Bronagh has come on.
0:20:52 > 0:20:56Since she had her cardiac surgery at the start of the year,
0:20:56 > 0:21:00she has just come on so much, and to see Bronagh on her feet
0:21:00 > 0:21:05and developing so much, so quickly, it's just great.
0:21:05 > 0:21:08And as Bronagh gets older, her need for hospice,
0:21:08 > 0:21:12she may not fit our criteria, maybe in a few years' time
0:21:12 > 0:21:16we'll be able to discharge her, which is brilliant.
0:21:16 > 0:21:20They may lose some of the services, but what they gain is so much more.
0:21:23 > 0:21:26Do you want juice? Here.
0:21:26 > 0:21:28Caelainn is on school holidays,
0:21:28 > 0:21:33but he is unable to venture too far from the house by himself.
0:21:33 > 0:21:37Any risk of his tracheostomy coming out could endanger his life.
0:21:37 > 0:21:39How do you dance like a girl?
0:21:39 > 0:21:42SHE LAUGHS
0:21:42 > 0:21:45He's mostly in the house or else I would let him out to the garden,
0:21:45 > 0:21:46I would sit out there with him.
0:21:46 > 0:21:49Every time the weather comes on, he's like, "What's it going to be like?
0:21:49 > 0:21:53"Is it going to be sunny?" He loves getting out there.
0:21:53 > 0:21:56Once he gets out he will not come in, but I have to be out with him,
0:21:56 > 0:22:00you know, cos of the trachy, obviously if something happens or whatever,
0:22:00 > 0:22:02I have to be with him.
0:22:02 > 0:22:05There was a couple of wee boys a couple of weeks ago actually called for him
0:22:05 > 0:22:07and asked could he come out to play,
0:22:07 > 0:22:10and Caelainn had to explain, you know - no, he can't, you know?
0:22:10 > 0:22:13But hopefully over the summer he'll make wee friends
0:22:13 > 0:22:16and they can come into the garden with him, you know?
0:22:16 > 0:22:19Can you break-dance? Go, do your break-dance.
0:22:25 > 0:22:27SHE LAUGHS
0:22:32 > 0:22:34Yeah!
0:22:35 > 0:22:39He is a wee entertainer. He is, he is just a wee entertainer.
0:22:39 > 0:22:42He's our entertainment, so he is!
0:22:44 > 0:22:47In just a few days, Caelainn will have to travel to London
0:22:47 > 0:22:51for another appointment in Great Ormond Street Hospital.
0:22:55 > 0:23:00He's to get injections into the cyst to try and shrink them down and kill them,
0:23:00 > 0:23:05and laser surgery done to his tongue.
0:23:05 > 0:23:09So we'll probably be over there for a couple of nights anyway, hopefully.
0:23:09 > 0:23:11Hopefully that's all. Yeah?
0:23:37 > 0:23:40Well, today Caelainn is in Dinosaur Ward
0:23:40 > 0:23:43which is basically where they prep the kids for going into theatre.
0:23:43 > 0:23:46Today it will be for sclerotherapy,
0:23:46 > 0:23:49which is injections into his face to try and shrink the cysts
0:23:49 > 0:23:52around his jaw and around his mouth,
0:23:52 > 0:23:56and basically a bit of surgery on his tongue,
0:23:56 > 0:24:00a bronchoscope and a bit of laser surgery in round the airway.
0:24:00 > 0:24:04So, just hopefully all goes well.
0:24:05 > 0:24:08He knows what's coming,
0:24:08 > 0:24:12but he just sort of has his own way of dealing with it, so he does.
0:24:18 > 0:24:20DAD LAUGHS
0:24:20 > 0:24:23- I've none left! - It's on my head!
0:24:26 > 0:24:2916-year-old Tammy lives with her aunt
0:24:29 > 0:24:32and is a regular visitor to the children's hospice.
0:24:32 > 0:24:38SHE SINGS ALONG WITH MUSIC
0:24:38 > 0:24:43# Afraid to tell the world What I've got to say
0:24:43 > 0:24:45# This is real, this is me
0:24:45 > 0:24:49# I'm exactly where I'm supposed to be now. #
0:24:49 > 0:24:52Tammy's got muscular dystrophy limb-girdle.
0:24:52 > 0:24:54It's a waste of the muscles.
0:24:54 > 0:24:57They break up, all the wee fibres break-up and they become very loose
0:24:57 > 0:25:02so they don't have a lot of control, so the muscles become no good.
0:25:02 > 0:25:08# Would you lie with me and just forget the world? #
0:25:08 > 0:25:12She's lost most of her mobility anyway now,
0:25:12 > 0:25:15and now it's just a matter of keeping her healthy.
0:25:15 > 0:25:18Her lung capacity has probably gone down a wee bit now,
0:25:18 > 0:25:19it will deteriorate a bit more.
0:25:19 > 0:25:23These are the years she will probably deteriorate a bit more.
0:25:23 > 0:25:28I would like to take pictures of famous people.
0:25:28 > 0:25:32- You want to be a photographer? - Yep.
0:25:32 > 0:25:39This is of my second school. That one was on a bus...
0:25:39 > 0:25:42Nobody can tell us what's going to happen in five years' time,
0:25:42 > 0:25:45in three years' time, we don't know.
0:25:45 > 0:25:47We know that she'll gradually get worse,
0:25:47 > 0:25:49but how quick, how fast, we don't know.
0:25:49 > 0:25:54So we sort of try not to dwell on it and just get on with it, do as much as we can.
0:25:56 > 0:26:01Today, Tammy has arrived at the hospice and will be staying for the weekend,
0:26:01 > 0:26:04providing a welcome break for both her and her aunt Susie.
0:26:10 > 0:26:13When somebody first says to me about going to the hospice,
0:26:13 > 0:26:17I didn't know anything about a hospice or what it does.
0:26:17 > 0:26:20I thought it was end-of-life and that was it, that's where people went,
0:26:20 > 0:26:23until we went up there and realised how important respite is.
0:26:23 > 0:26:25You know that you are leaving the child up there
0:26:25 > 0:26:29and she's completely happy, and I'm delighted that I have three days
0:26:29 > 0:26:32that I can get other things done that I wouldn't normally get done.
0:26:35 > 0:26:37She's made a lot of friends,
0:26:37 > 0:26:39definitely has made her a better person,
0:26:39 > 0:26:42she is not as frustrated or crabbit as she was,
0:26:42 > 0:26:47because when you see other people with something similar to yourself,
0:26:47 > 0:26:50it doesn't make you feel as bad as if it's just you.
0:26:53 > 0:26:57This weekend is organised solely for teenage girls,
0:26:57 > 0:26:59and the emphasis is on having fun.
0:26:59 > 0:27:01If she gets on my nerves...
0:27:05 > 0:27:08You're talking typical teenage girl behaviour.
0:27:08 > 0:27:11There's just been a paint fight, the pizzas are coming,
0:27:11 > 0:27:15they'll probably get their jammies on and talk to the early hours.
0:27:15 > 0:27:20When you are working with teenagers, there's a different level of communication there.
0:27:20 > 0:27:23It's how you would if you had your own children.
0:27:23 > 0:27:27It's the difference between if you've got a two-year-old and you've got a 15-year-old.
0:27:29 > 0:27:33See if you ask to get the glossy hair filter on it, your hair is amazing looking.
0:27:33 > 0:27:35This kind of stuff actually does happen all the time!
0:27:35 > 0:27:37That's lovely!
0:27:37 > 0:27:39What would you like to do this weekend?
0:27:39 > 0:27:42What kind of stuff?
0:27:42 > 0:27:44'These kids have... Obviously they're here for a reason,
0:27:44 > 0:27:47'they've got their complex needs and they need their medication.
0:27:47 > 0:27:50'You're having a laugh and you're having fun with the kids,'
0:27:50 > 0:27:52but you're still a nurse, you're still working.
0:27:52 > 0:27:55You still need to be giving them what they need.
0:27:56 > 0:27:59'You get a really good rapport with the kids,
0:27:59 > 0:28:04'and you do, you just leave here feeling like you've done something,'
0:28:04 > 0:28:07and you do think about it when you're outside of work,
0:28:07 > 0:28:09you do think about the kids.
0:28:09 > 0:28:11I enjoy their company, I enjoy working with them.
0:28:11 > 0:28:14Because they do, they squeeze your heart a wee bit.
0:28:24 > 0:28:26In Great Ormond Street Hospital,
0:28:26 > 0:28:29Caelainn is being brought to the operating theatre.
0:28:29 > 0:28:33Today's procedure aims to improve his condition by reducing
0:28:33 > 0:28:35the cysts around his face and neck.
0:28:37 > 0:28:40The plan today is to do some injection treatment to reduce
0:28:40 > 0:28:43some of the swelling in his face.
0:28:43 > 0:28:45We're also going to have a look at his airways
0:28:45 > 0:28:47cos obviously he's got a tracheostomy.
0:28:47 > 0:28:50We do our best to get that out
0:28:50 > 0:28:54and some heat treatment to the lumps on his tongue
0:28:54 > 0:28:58to try to stop those bleeding and causing him so much trouble.
0:28:59 > 0:29:03It's all about making him more normal, really, to make him
0:29:03 > 0:29:05look more normal, to make his tongue look more normal
0:29:05 > 0:29:08and hopefully get him breathing without a tube.
0:29:13 > 0:29:17The first thing we're going to do is have a look at Caelainn's airway,
0:29:17 > 0:29:20you can see he's breathing through a tube in his neck.
0:29:20 > 0:29:24We're going to look at the air passage and see how much
0:29:24 > 0:29:26of the cystic hygroma is in the airway
0:29:26 > 0:29:29and whether there's anything we can do about that.
0:29:31 > 0:29:36Most of the disease is in the back of the tongue,
0:29:36 > 0:29:39the larynx, the voice box and the trachea are relatively clear.
0:29:43 > 0:29:47We've done the airway endoscopy now and the next thing is to treat
0:29:47 > 0:29:51some of these lesions on the front of the tongue.
0:29:51 > 0:29:54His tongue is covered with little almost like blood blisters
0:29:54 > 0:29:56which bleed from time to time
0:29:56 > 0:29:59and they're quite common in children with this problem.
0:29:59 > 0:30:02We're going to use a low-temperature heat treatment to remove those.
0:30:15 > 0:30:18That's the treatment to the tongue done now
0:30:18 > 0:30:21and the next thing is Dr Barnett is going to do some injection
0:30:21 > 0:30:24sclerotherapy to the bulk around his neck.
0:30:28 > 0:30:33So she's going to inject something called doxycycline into the neck
0:30:33 > 0:30:36and that's called sclerotherapy
0:30:36 > 0:30:40and its role is to shrink down the cyst which is causing the swelling.
0:30:58 > 0:31:02So that's all done. All went fine. No problems.
0:31:02 > 0:31:03We'll get him back in a few months
0:31:03 > 0:31:06and we'll start working on the back of the tongue and the airway,
0:31:06 > 0:31:09because I think the next step for him is to try
0:31:09 > 0:31:13and get the tracheostomy out and we will only achieve that when we've
0:31:13 > 0:31:15made the back of the tongue smaller
0:31:15 > 0:31:18and removed some of the bulk from there.
0:31:18 > 0:31:21All the problems he's got are things that we have treatments for
0:31:21 > 0:31:25and we'll solve although it may take a while.
0:31:41 > 0:31:45Health care assistant Emma has recently completed her training
0:31:45 > 0:31:50at the hospice and is now fully immersed in her new role.
0:31:50 > 0:31:51I know.
0:31:52 > 0:31:56I was training with the hospice themselves for four weeks.
0:31:56 > 0:31:59I am now out of that period of time,
0:31:59 > 0:32:03so it's OK for me to go in and deal with the children myself.
0:32:04 > 0:32:10But before that, I had worked for the trust to get...
0:32:10 > 0:32:13to gain some knowledge and training before I came into the hospice.
0:32:13 > 0:32:16I think we have a tired wee man on our hands this morning!
0:32:16 > 0:32:18'I absolutely love it.
0:32:18 > 0:32:22'It's nice to feel like you're giving something back and obviously,
0:32:22 > 0:32:25'you're helping families have some respite.'
0:32:25 > 0:32:28Can you not make up your mind?
0:32:28 > 0:32:31'So it's a very rewarding job and you can go home knowing that'
0:32:31 > 0:32:35you're doing something good and giving something back.
0:32:37 > 0:32:41- You happy enough there, Karen? Feed rate 50.- Yeah.
0:32:41 > 0:32:43And that's how much is to be delivered.
0:32:44 > 0:32:48'You wouldn't be human if you didn't get attached to the children.'
0:32:48 > 0:32:49It's still resisting.
0:32:49 > 0:32:54'Yes, you will get very involved and it is hard at times'
0:32:54 > 0:32:57but it takes you, nearly, to get attached,
0:32:57 > 0:33:02to be able to do the job to the best of your ability, I think.
0:33:02 > 0:33:04We'll get your wee glasses on, darling.
0:33:04 > 0:33:07Even though you're sleeping. Sorry, sweetheart.
0:33:17 > 0:33:22This is a wee book that after a child has passed away, they provide you
0:33:22 > 0:33:26with a page or two or three,
0:33:26 > 0:33:30that you can fill with memories of your child.
0:33:30 > 0:33:35These are the pages that I've done for our daughter, Amy,
0:33:35 > 0:33:37after she passed away.
0:33:40 > 0:33:46Amy was born on the seventh of February 2007.
0:33:46 > 0:33:47I think it was the next day,
0:33:47 > 0:33:51she started showing signs of seizure activity.
0:33:52 > 0:33:56The brain scan, in the words of the consultant, was horrific.
0:33:56 > 0:34:00So unfortunately, they had prepared us for the worst
0:34:00 > 0:34:05um, and did feel that this time, once we turned off life support,
0:34:05 > 0:34:07that Amy would pass away quite quickly -
0:34:07 > 0:34:12which she didn't and she survived for five and a half months.
0:34:14 > 0:34:18Throughout the process, we had felt that it would have been our option
0:34:18 > 0:34:22that if Amy was to pass away, that we would let that happen at home.
0:34:22 > 0:34:26But as it transpired, actually we came here for a weekend
0:34:26 > 0:34:30and Amy actually passed away that weekend here.
0:34:30 > 0:34:34But thinking back afterwards, again, that worked out for the best.
0:34:37 > 0:34:40Because I can now... Again, it's a personal choice, you know,
0:34:40 > 0:34:45I can be at home and not have those memories of home
0:34:45 > 0:34:49but at the same time, I suppose, even whenever I come here,
0:34:49 > 0:34:54I don't have those lasting memories, "This is the last place I was with my daughter."
0:34:54 > 0:34:58Um, I still feel very at home coming here.
0:34:58 > 0:35:00Um...
0:35:00 > 0:35:02Sorry.
0:35:22 > 0:35:24The surgeon came in and spoke to us
0:35:24 > 0:35:29and told us everything that sort of needs to be done in the future.
0:35:29 > 0:35:32So he does. At the minute he's got his problems with the back of his tongue,
0:35:32 > 0:35:35there's that much bulk at the back of his tongue, he's finding it hard
0:35:35 > 0:35:41to use his upper airway and for swallowing and stuff, so he'll be back in three months' time
0:35:41 > 0:35:43for more surgery done on the back of the tongue.
0:35:43 > 0:35:47So it's hard on him just doing each bit at a time.
0:35:47 > 0:35:50But it's better than sort of trying to do too much
0:35:50 > 0:35:51and putting his life in danger.
0:35:54 > 0:35:55Oh, sorry!
0:35:58 > 0:36:01It's going to be a very long process in trying to get
0:36:01 > 0:36:04the back of the tongue done, cos it's such a vast area.
0:36:05 > 0:36:10As I say, as long as things get sorted out and keep him safe,
0:36:10 > 0:36:11that's the main thing, so it is.
0:36:24 > 0:36:28Three-year-old Oisin has arrayed chromosome disorder which has
0:36:28 > 0:36:32led to severe physical and developmental delay.
0:36:35 > 0:36:39He was born by...it was a normal delivery.
0:36:39 > 0:36:42When he was delivered, they noticed that his foot,
0:36:42 > 0:36:45his left foot was bent right back and it was touching his...
0:36:45 > 0:36:49Almost touching his shin. They said that he had... What did they call it?
0:36:49 > 0:36:51Dysmorphic features.
0:36:51 > 0:36:56And I think the hardest thing for me and John was being told about...
0:36:56 > 0:36:59that he would have a learning disability, I think
0:36:59 > 0:37:03was the hardest thing for us, that he would never speak to us.
0:37:03 > 0:37:09To never hear your child talk, it's a lot to take on.
0:37:09 > 0:37:13He couldn't tell me how long I would keep him for, he couldn't say
0:37:13 > 0:37:16but then, we weren't bothered about that
0:37:16 > 0:37:21because no-one knows what life's got in store for them.
0:37:21 > 0:37:23People, they kept saying to us,
0:37:23 > 0:37:26"You just have to take one day at a time," but it's hard.
0:37:35 > 0:37:39Show me. Put it back in. Come on.
0:37:41 > 0:37:43Oh, aren't you clever? Do it again.
0:37:46 > 0:37:50Because he has developmental delay, it took a while, you know,
0:37:50 > 0:37:53for him to smile appropriately at things.
0:37:53 > 0:37:55And then we thought about, he might never laugh,
0:37:55 > 0:37:57and the first time he laughed, we both cried
0:37:57 > 0:37:59and then every time he laughed after that, we kept on crying.
0:37:59 > 0:38:02We were crying for ages every time, cos it was lovely to hear him
0:38:02 > 0:38:07laughing. And like now, sitting, like he's three, and he doesn't sit.
0:38:10 > 0:38:12I would love him to be toddling about the house and having to have
0:38:12 > 0:38:16stair gates and eyes in the back of my head that he might be...
0:38:16 > 0:38:20his fingers in a plug socket, but he doesn't. He just...
0:38:21 > 0:38:23I would love him to run about.
0:38:24 > 0:38:27My street's full of little boys and you look at them all playing
0:38:27 > 0:38:30and it's different.
0:38:37 > 0:38:41Natalie and Oisin often have up to three appointments
0:38:41 > 0:38:44a week in the Royal Belfast Hospital for Sick Children.
0:38:46 > 0:38:49Oisin is fed through a tube in his stomach and today's
0:38:49 > 0:38:52appointment is to discuss a potential replacement device.
0:38:54 > 0:38:59Look at that lovely sight. Isn't that just beautiful?
0:38:59 > 0:39:01- It's probably one of the best I've seen.- Oh, OK.- So it is.
0:39:01 > 0:39:07So from that point of view, the tube, this is what's called denuding.
0:39:07 > 0:39:08Okey-dokey.
0:39:10 > 0:39:13So, there's a number of reasons why we put a button
0:39:13 > 0:39:17device into a child and one of the primary reasons is
0:39:17 > 0:39:22because that even though they have to go to theatre
0:39:22 > 0:39:24to have the PEG-type device removed,
0:39:24 > 0:39:29if we put in a button or a balloon device, then subsequently,
0:39:29 > 0:39:32they won't need to go to theatre for changing the device.
0:39:32 > 0:39:34OK.
0:39:34 > 0:39:40Eating is part of the normal healthy process that we do every day
0:39:40 > 0:39:42and it's something that we take for granted.
0:39:42 > 0:39:46I think that sometimes we tend to not really accept
0:39:46 > 0:39:49how difficult it is for a lot of these parents,
0:39:49 > 0:39:53trying to get the smallest amount into their child
0:39:53 > 0:39:57and in some instances, there is no other option but to go down
0:39:57 > 0:40:02the route of enteral feeding, be that a nasogastric tube,
0:40:02 > 0:40:05or be that their child has to go for surgery
0:40:05 > 0:40:08to have a gastrostomy-type device inserted.
0:40:08 > 0:40:12So this win here is a Mickey button. All right?
0:40:12 > 0:40:14And this one's a Minnie button.
0:40:14 > 0:40:17The Mickey button is a little bit more robust.
0:40:17 > 0:40:19It's a little bit of a sturdier device.
0:40:19 > 0:40:25'I think Mum is trying her best in a very difficult situation.
0:40:25 > 0:40:30'You've got a little person who's got a mind of his own and is'
0:40:30 > 0:40:35obviously not going to provide her with the simple normal route.
0:40:38 > 0:40:40Right, see you soon.
0:40:44 > 0:40:48Like last night, no sleep. He does it the same time every night.
0:40:48 > 0:40:51He'll wake from about three
0:40:51 > 0:40:54and then he'll only go over again at about seven.
0:40:54 > 0:40:58If you're not sleeping, everything becomes heightened, you know,
0:40:58 > 0:41:01and everything just stresses you out more.
0:41:01 > 0:41:05Oh! Oh, can I keep it?
0:41:12 > 0:41:16At home, Natasha's bedtime routine begins with a therapy session
0:41:16 > 0:41:19in her purpose-built sensory room.
0:41:24 > 0:41:29And when we do that, press "on", put the machine on, and then you just
0:41:29 > 0:41:34press "on" again and that's her on her therapy and it vibrates vigorously.
0:41:37 > 0:41:42It vibrates her chest vigorously and it means just any secretions
0:41:42 > 0:41:45or any phlegm or anything stuck to her chest wall, it all loosens up
0:41:45 > 0:41:49and falls off and it's easier for her to get rid of, then.
0:41:50 > 0:41:54And this has been a godsend from a chest point of view,
0:41:54 > 0:41:58because she was very seriously ill quite often with her chest.
0:42:00 > 0:42:05Six times in intensive care on life support and from she's had it,
0:42:05 > 0:42:07she has been fantastic.
0:42:11 > 0:42:15She says, "It's like a ride in Barry's for me!" Isn't it?
0:42:25 > 0:42:27There we go. Ready? One, two, three.
0:42:32 > 0:42:36We should be hoisting, so...
0:42:36 > 0:42:39Coming up into bed, miss? Ho, Ho!
0:42:42 > 0:42:47There we are. Now we have to put a wee sats probe on her.
0:42:47 > 0:42:52This is to measure her oxygen and her heart rate overnight.
0:42:53 > 0:42:55And it goes on her toe.
0:42:56 > 0:42:59If her oxygen levels were to drop,
0:42:59 > 0:43:03the sats monitor would alarm to let you know something was wrong
0:43:03 > 0:43:07and basically, that goes on over her nose to expand her lungs
0:43:07 > 0:43:10during her sleep and also if Natasha was to stop breathing,
0:43:10 > 0:43:13which she would do occasionally, that will kick in for her
0:43:13 > 0:43:15and it will remind her to breathe.
0:43:19 > 0:43:23You just get used to the routine of it, you know. You do it very quickly.
0:43:23 > 0:43:26She's on the same medicines morning and night,
0:43:26 > 0:43:28so you're so used to her medicines,
0:43:28 > 0:43:33you're so used to what you have to get out and use, so...
0:43:33 > 0:43:40She gets six medicines and the probiotic at night-time.
0:43:40 > 0:43:43Probiotic is an overload of good bacteria, because with
0:43:43 > 0:43:47the antibiotics, sometimes it can be very severe on their stomach.
0:43:47 > 0:43:50This is her antibiotic, which she's on at the moment.
0:43:52 > 0:43:55And then, the Omeprazol. The Omeprazol is another medicine.
0:43:55 > 0:43:59It is for the acid in her stomach. This is her iron, from...
0:43:59 > 0:44:04She had her operation in January and this one then is her magnesium.
0:44:04 > 0:44:08It doesn't feel like you're doing anything out of the ordinary or
0:44:08 > 0:44:10anything any different for Natasha, you know.
0:44:10 > 0:44:15That's her Epilim. That's for seizure control.
0:44:15 > 0:44:18That just connects into her wee PEG as you can see there.
0:44:20 > 0:44:24So this is her milk, then. This is what she feeds on all night.
0:44:24 > 0:44:27This is her food, yeah. So this is why everything has to be so sterile,
0:44:27 > 0:44:30because that's obviously going into her system.
0:44:30 > 0:44:33She gets 900ml of milk overnight.
0:44:41 > 0:44:43There we go.
0:44:48 > 0:44:49See you in the morning, darling.
0:44:52 > 0:44:55Throughout the night, Natasha needs constant monitoring
0:44:55 > 0:44:59and Natalie has installed CCTV in her bedroom,
0:44:59 > 0:45:02so she is instantly alerted to any problems.
0:45:03 > 0:45:07I just keep an eye on her and the sats monitor at night
0:45:07 > 0:45:10and again here, there's Reuben down below.
0:45:11 > 0:45:14The first half of the night is where I can't sleep
0:45:14 > 0:45:19and I would be sitting on the phone or just fiddling about.
0:45:26 > 0:45:29That's basically the cameras that you've seen upstairs
0:45:29 > 0:45:32with Natasha and we can log onto a mobile or iPad anywhere,
0:45:32 > 0:45:35either in the house or out and about. It's brilliant.
0:45:35 > 0:45:37It's peace of mind. You can come down there,
0:45:37 > 0:45:39spend a bit of time together at night-time
0:45:39 > 0:45:43when the kids are in bed, have the cameras on, and you know
0:45:43 > 0:45:47if anything untowards happens, then it's going to alert you.
0:45:53 > 0:45:57Natalie is bringing Oisin to the hospice for a short break.
0:46:00 > 0:46:01- Hello.- Hi.
0:46:02 > 0:46:06This is Natalie and Oisin's first visit to Horizon House, so the
0:46:06 > 0:46:10team need to know the exact details of his complex medical condition.
0:46:11 > 0:46:15OK, so this is just a care plan that we'll be using to plan his care.
0:46:15 > 0:46:18So he is fed by a PEG? Yes.
0:46:18 > 0:46:21And at seven o'clock in the morning, he gets PaediaSure,
0:46:21 > 0:46:24and that goes anything between 100-220ml an hour?
0:46:24 > 0:46:25Yeah, because at the minute,
0:46:25 > 0:46:28we've slowed them down because he's making himself vomit.
0:46:28 > 0:46:33- OK. So have you got it up to 100? - 150.- 150 at the minute.
0:46:33 > 0:46:34But never in the morning.
0:46:34 > 0:46:37It's a big responsibility doing the admissions but through time
0:46:37 > 0:46:39being here, you get to know what you need to ask the parents
0:46:39 > 0:46:41and they get to know us and they get
0:46:41 > 0:46:44to know what they need to tell us too, so it's just about getting
0:46:44 > 0:46:46all that information at the start and putting it on the paper
0:46:46 > 0:46:48for everybody who is going to look after him,
0:46:48 > 0:46:51especially if you're not going to be there that whole weekend.
0:46:51 > 0:46:54You have to try and get everything down.
0:46:54 > 0:46:59- Right. Does Oisin take wee seizures? - Yeah, he does.- OK. What type?
0:46:59 > 0:47:00Do you know what type he takes?
0:47:00 > 0:47:05- At the minute, what he's been doing, he would take...stare...like, staring seizures.- OK.
0:47:05 > 0:47:08It's so important to try and get that information down on paper
0:47:08 > 0:47:11so all staff are aware what his routine is from the moment
0:47:11 > 0:47:14he wakens to the moment he's going to bed and to get the most
0:47:14 > 0:47:16out of the respite for Oisin, to make him be able to do all
0:47:16 > 0:47:19the activities and enjoy his stay and to let the parents
0:47:19 > 0:47:23get a break too, to enjoy their stay, even though it's their first admission.
0:47:27 > 0:47:30We always ask the parents to stay on their first admission just
0:47:30 > 0:47:34so we get to know the child, we get to know the parents too.
0:47:34 > 0:47:37It provides security for us and for them to,
0:47:37 > 0:47:41because it's hard to leave your child the first time in a strange place too, so it lets us
0:47:41 > 0:47:44look after the child with them in the background,
0:47:44 > 0:47:49making sure that we're doing everything right too and it lets the parents get to know the staff
0:47:49 > 0:47:52who's looking after the children as well.
0:47:52 > 0:47:56# Out with the golden we sew
0:47:56 > 0:47:59# And the lower past that crawls... #
0:47:59 > 0:48:05The initial decision to accept respite was a difficult decision.
0:48:05 > 0:48:08When he was born, he was only...he was still so young
0:48:08 > 0:48:12that we weren't accepting that that was our reality.
0:48:13 > 0:48:17You feel guilty that you're just palming him off.
0:48:17 > 0:48:20At the time, I'm obviously not... It's different now.
0:48:20 > 0:48:23I understand now that we need the break in order to be good
0:48:23 > 0:48:28parents to him. But at the time, we were just, no, we wouldn't.
0:48:28 > 0:48:29We wouldn't accept it.
0:48:31 > 0:48:34Are you throwing the ball through there? One, two, three...
0:48:34 > 0:48:37Are you going to splish-splash?
0:48:45 > 0:48:49MUSIC: "Look Out" by James Vincent McMorrow
0:49:07 > 0:49:11I think he loves. He looks like he loves it. So, yeah, it's nice.
0:49:11 > 0:49:13It's lovely to see him so happy.
0:49:41 > 0:49:45Caelainn is no stranger to the hospice and he comes to stay at Horizon House
0:49:45 > 0:49:50around three times a year, giving his parents a much-needed break.
0:49:53 > 0:49:56You can't go out. You just cannot go out.
0:49:56 > 0:49:58Cos nobody can look after him, only the hospice,
0:49:58 > 0:50:00that's the only time I do go out.
0:50:01 > 0:50:04- Hello.- Hi! Come in.
0:50:04 > 0:50:07I just love getting him in there and you know, my God,
0:50:07 > 0:50:10he's so well-looked after and he loves it.
0:50:10 > 0:50:12There's always something for him to do.
0:50:12 > 0:50:17One of the best-loved places in the hospice is the art room,
0:50:17 > 0:50:21where the children and staff can get creative - and make a mess!
0:50:24 > 0:50:28We get allocated a child and then I'm responsible for that child,
0:50:28 > 0:50:33so for all their physical needs and emotional needs and their play.
0:50:33 > 0:50:34Is it tickly?
0:50:37 > 0:50:42I know you've got tickly feet, I do! I'm going to put this on here.
0:50:44 > 0:50:46And I lift it up. Oh, look at that.
0:50:46 > 0:50:49It's a really good footprint, isn't it?
0:50:49 > 0:50:53I focus around play and fun and activities and it's every
0:50:53 > 0:50:58child's right to play and have fun, regardless of their capabilities.
0:50:58 > 0:51:00- Tell me this, were you driving the Mini?- Yeah.
0:51:00 > 0:51:02Were you in it last night?
0:51:03 > 0:51:07It's a very challenging job but it's very rewarding and I have to say,
0:51:07 > 0:51:11getting up every morning, I never dread coming into work.
0:51:11 > 0:51:19You know, you just feel so privileged working here.
0:51:44 > 0:51:48Today is six-year-old Natasha's first day back at school.
0:51:48 > 0:51:51Getting her ready in the morning can take up to two hours
0:51:51 > 0:51:56but Natalie's mum often provides a helping hand.
0:51:56 > 0:52:00She's not used to getting up this early while she's been off school.
0:52:01 > 0:52:06But she's going to know all about it now cos she has to get up early.
0:52:06 > 0:52:07She's back to school today.
0:52:07 > 0:52:11It's her first day back to school in almost two years.
0:52:11 > 0:52:15It's a big day for her and it's a hard day for Mummy letting go again after so long
0:52:15 > 0:52:20and just being, just having her at home all the time and just letting
0:52:20 > 0:52:23the responsibility go onto somebody else for a few hours, you know.
0:52:29 > 0:52:30Mum does two nights with us
0:52:30 > 0:52:33and some mornings and it's just fantastic
0:52:33 > 0:52:35that I have Mum there for the help and, you know,
0:52:35 > 0:52:38she takes the pressure off, especially there,
0:52:38 > 0:52:40getting Natasha ready and out so early for school, you know.
0:52:40 > 0:52:43It means I can get Reuben then ready and that
0:52:43 > 0:52:46and get myself organised while she is organising Natasha.
0:52:46 > 0:52:49It just makes life a lot easier.
0:52:49 > 0:52:51Push, push. Push, push, push.
0:52:51 > 0:52:55Well, I've been helping Natalie with her really since she was born.
0:52:55 > 0:52:59That's my job now and it's the best job in the world.
0:52:59 > 0:53:00One, two, three.
0:53:00 > 0:53:02Up we go.
0:53:02 > 0:53:05Now last week, she didn't sleep a wink both nights I was here
0:53:05 > 0:53:09and I think, you know, "Well, I'm OK, I can go home
0:53:09 > 0:53:11"and sleep the other five nights of the week."
0:53:11 > 0:53:16Natalie can't. Natalie has to keep going all the time.
0:53:16 > 0:53:17She's amazing.
0:53:17 > 0:53:20If anybody had told me before Natasha was born, you know,
0:53:20 > 0:53:23Natalie will have a child with special needs
0:53:23 > 0:53:27and how she would cope, I would have said, not a chance,
0:53:27 > 0:53:30because Natalie was a real tomboy and that, herself.
0:53:30 > 0:53:35When I see the way she copes with her, she is absolutely amazing.
0:53:35 > 0:53:36There we go, chicken.
0:53:36 > 0:53:38That's your shoes on.
0:53:38 > 0:53:41You have to supply the wipes and nappies and stuff to the school,
0:53:41 > 0:53:44so it's just remembering that and then,
0:53:44 > 0:53:46obviously her oxygen cylinder as well.
0:53:48 > 0:53:51She'll be fed oxygen if she takes a seizure then
0:53:51 > 0:53:54and if she has a strop she gets fed oxygen.
0:53:55 > 0:54:00An inspiration she is, like, the way she's coped. It nearly makes me cry!
0:54:00 > 0:54:03She's fantastic with her.
0:54:05 > 0:54:06Um...
0:54:09 > 0:54:10Sorry.
0:54:10 > 0:54:13Your glasses! Nearly forgot about them, didn't I?
0:54:13 > 0:54:14We daren't forget about them.
0:54:15 > 0:54:19She's fought Natasha's corner from the word go. Um...
0:54:21 > 0:54:25She just couldn't have had a better mummy.
0:54:25 > 0:54:26Car keys.
0:54:38 > 0:54:41Five-year-old Caelainn is also off to school and the clearing
0:54:41 > 0:54:46of his airway has become a normal part of his morning routine.
0:54:49 > 0:54:53Oh, you've got to go to work? Are you driving?
0:54:56 > 0:55:03Oh, his oxygen, his suction machine, school bag. Trachy box.
0:55:05 > 0:55:07Just a lot of stuff, so it is.
0:55:14 > 0:55:17Winter is the most difficult season for Caelainn
0:55:17 > 0:55:21as the cold, damp weather affects his chest.
0:55:21 > 0:55:23His airway needs to be cleared more regularly
0:55:23 > 0:55:28and the 45-minute commute to school can be an arduous journey.
0:55:30 > 0:55:35It's just until he gets his whole system cleared out, so it is.
0:55:35 > 0:55:38It usually takes nearly the whole journey into school for this to happen.
0:55:38 > 0:55:42Usually, by the time we get to school, he's all right, so he is.
0:55:42 > 0:55:44He's cleared himself.
0:55:44 > 0:55:47But trying to deal with all this while you're driving, like,
0:55:47 > 0:55:48it is hard, like, so it is.
0:55:49 > 0:55:51It depends on what sort of night he has.
0:55:51 > 0:55:55He could be only having four hours' sleep and then you're up.
0:55:55 > 0:55:58It is, it has its toll on you, so it does.
0:55:58 > 0:56:02But your body naturally just knocks itself out, so it does.
0:56:11 > 0:56:14We're here now. Back to school.
0:56:17 > 0:56:20With Natasha ready to begin her day at school,
0:56:20 > 0:56:23mum Natalie returns home with conflicting feelings.
0:56:25 > 0:56:29You've got all everything, mixed emotions running through your head.
0:56:29 > 0:56:31You're happy that she's gone back to school,
0:56:31 > 0:56:35she's getting normality, doing all her activities through the day
0:56:35 > 0:56:38but then the same time, you're trying to wrap her up in cotton wool.
0:56:38 > 0:56:40You want to keep her at home and keep her well
0:56:40 > 0:56:44and keep her away from bugs and infections and whatever else.
0:56:46 > 0:56:48She'll love it.
0:56:48 > 0:56:52Her silly old mummy sitting here, probably pining for her
0:56:52 > 0:56:55and she's in there enjoying it and having fun.
0:57:03 > 0:57:06Christmas is a special time for families who use
0:57:06 > 0:57:09the services of the hospice.
0:57:09 > 0:57:13- # Without it it really feels wasted time...- #
0:57:13 > 0:57:20I'm in Horizon House Hospice and I got to see Santa Claus early.
0:57:20 > 0:57:23And he said, "What do you want for Christmas?"
0:57:23 > 0:57:26I said, "A 40-inch plasma TV."
0:57:30 > 0:57:35But for bereaved parents, Christmas is a particularly difficult time.
0:57:36 > 0:57:41It is hard, but you know, it is part and parcel of life
0:57:41 > 0:57:46unfortunately, and so, you make it what you want to make it, and we do.
0:57:50 > 0:57:54For other families, Christmas is a time to look forward to.
0:57:57 > 0:58:03- Where's Santa coming?- Down the chimney.- Do you think he'll fit?
0:58:03 > 0:58:05With all the presents.
0:58:05 > 0:58:08# And it's real for me
0:58:08 > 0:58:13# There must be someone who's feeling for me... #
0:58:13 > 0:58:16I'm just so looking forward to it this year, you know, because
0:58:16 > 0:58:20every other year, she's been in hospital over the Christmas period.
0:58:22 > 0:58:24You're really just concentrating on Christmas.
0:58:24 > 0:58:27You don't have sort of thoughts of the future.
0:58:27 > 0:58:31# Let me feel the love come over me... #
0:58:31 > 0:58:33As another year draws to a close,
0:58:33 > 0:58:37the families continue to make the most of every day with the help
0:58:37 > 0:58:41and support provided by the Children's Hospice.
0:58:42 > 0:58:47# Bring me a higher love
0:58:47 > 0:58:53# Bring me a higher love
0:58:53 > 0:58:58# Bring me a higher love
0:58:58 > 0:59:03# Bring me a higher love
0:59:03 > 0:59:08# I can rise above for this higher love. #