0:00:04 > 0:00:07From headquarters just outside Barnsley in South Yorkshire,
0:00:07 > 0:00:10a dedicated team of doctors and nurses fights to keep
0:00:10 > 0:00:13some of Britain's sickest children alive,
0:00:13 > 0:00:17long enough to reach the specialist care they desperately need.
0:00:17 > 0:00:20If a child needs a life-saving operation...
0:00:20 > 0:00:22Statin down to ten, please.
0:00:22 > 0:00:25..or a premature baby has to be moved to a neonatal unit,
0:00:25 > 0:00:28it's the Embrace team's job to provide intensive care
0:00:28 > 0:00:32in the back of a moving ambulance, plane or helicopter.
0:00:32 > 0:00:35- We need to stop, please. - Will you pull over, mate?
0:00:35 > 0:00:39She's tiny. And then to actually end up over there for surgery now.
0:00:39 > 0:00:42Is this the end for her? Is she going to pull through?
0:00:42 > 0:00:46As the NHS concentrates specialist care for babies and children
0:00:46 > 0:00:49in fewer and bigger hospitals...
0:00:49 > 0:00:51I know, I know.
0:00:51 > 0:00:54..some of the UK's most vulnerable patients will need
0:00:54 > 0:00:57to undertake longer journeys to get expert care.
0:00:58 > 0:01:03- Where's she going?- They'll put her to sleep and hopefully fix her.
0:01:03 > 0:01:04Sorry, Jake.
0:01:04 > 0:01:08You are in so much distress. I just wanted somebody to help him.
0:01:08 > 0:01:09I love you, baby.
0:01:09 > 0:01:11SHE SOBS
0:01:11 > 0:01:1324 hours a day, every day,
0:01:13 > 0:01:18Embrace is on standby, tiny lives in its hands.
0:01:18 > 0:01:19'Hello, Embrace. How can I help?'
0:01:28 > 0:01:31Embrace Transport Service, Stacey speaking, how can I help?
0:01:32 > 0:01:36What I'll do is I'll just take some details, Donna, if that's OK.
0:01:36 > 0:01:40Every year, 3,500 calls come into
0:01:40 > 0:01:44the Infant and Paediatric Transport Service Headquarters near Barnsley,
0:01:44 > 0:01:48with requests to carry sick babies and children from local hospitals
0:01:48 > 0:01:51to the specialist care they desperately need.
0:01:53 > 0:01:56'Hello, Mandy speaking, how can I help?'
0:01:56 > 0:01:59'Hi, I'm calling from Hull Royal Infirmary.'
0:01:59 > 0:02:03- 'Hello.'- 'And I'm calling regarding transfer of a baby.'
0:02:03 > 0:02:07'Right. So, what's the problem at the moment? Is it a cardiac?'
0:02:07 > 0:02:11- 'Cardiac problem.'- 'You've got a cardiac problem. Right, OK.'
0:02:11 > 0:02:16Baby Julia has almost died four times in the last week
0:02:16 > 0:02:19because the oxygen levels in her blood dropped so low.
0:02:19 > 0:02:24She has Down's syndrome, and like many children with this condition,
0:02:24 > 0:02:27was also born with a defective heart.
0:02:27 > 0:02:29Julia's parent are Polish.
0:02:32 > 0:02:34- TRANSLATION:- When I was pregnant,
0:02:34 > 0:02:36we were aware of the fact that she was very unwell.
0:02:36 > 0:02:39But we didn't realise that her condition was so serious,
0:02:39 > 0:02:42that such a situation could happen.
0:02:42 > 0:02:46So we were simply preparing ourselves for the worst.
0:02:48 > 0:02:53Julia needs surgery, and the nearest children's heart unit to Hull
0:02:53 > 0:02:55is 60 miles away in Leeds.
0:02:57 > 0:03:00But there's been an unexpected development at the Leeds unit.
0:03:03 > 0:03:07'Surgery at a children's heart unit in Leeds is suspended,
0:03:07 > 0:03:11'because of concerns that the death rate is twice the national average.'
0:03:11 > 0:03:13'Some parents, as we've just been hearing,
0:03:13 > 0:03:17'and surgeons and clinicians based here, are absolutely devastated
0:03:17 > 0:03:18'by last night's surprise news.'
0:03:19 > 0:03:22The sudden closure of the surgical unit means Julia,
0:03:22 > 0:03:25and all other heart patients like her,
0:03:25 > 0:03:27will now have to be moved outside Yorkshire,
0:03:27 > 0:03:31potentially doubling the amount of time each critically ill child
0:03:31 > 0:03:33spends on the road.
0:03:35 > 0:03:38One of the extra Embrace teams drafted in to cover the longer
0:03:38 > 0:03:42journeys has arrived at Hull Royal Infirmary to collect Julia.
0:03:43 > 0:03:47- Ooh! That's a bit abrupt.- Exactly.
0:03:47 > 0:03:50Nurse Jamie is an experienced critical care nurse
0:03:50 > 0:03:52and Dr Sunny is a trainee specialist.
0:03:54 > 0:03:57What I'm planning on doing is putting a small tube down
0:03:57 > 0:04:01through her mouth, to basically help with her breathing.
0:04:01 > 0:04:04So we're going to put her on a machine to take over the work of her breathing for her.
0:04:04 > 0:04:07Julia's mum and dad moved to Hull from Poland
0:04:07 > 0:04:10with their two older children four years ago.
0:04:10 > 0:04:12Do you have any questions at the moment?
0:04:12 > 0:04:14No. My husband speak English...
0:04:14 > 0:04:17NURSE JAMIE: 'We want to tell parents as much as we can.
0:04:17 > 0:04:21'We want them to know what we're doing, we want them to know why we're doing it,
0:04:21 > 0:04:25'we want them to know the risks of us transferring their baby.'
0:04:27 > 0:04:32'It's very hard and having been on the opposite side of it recently,
0:04:32 > 0:04:35'where my little boy had to go to hospital in Spain,
0:04:35 > 0:04:38'I understand how hard it is for the parents as well,
0:04:38 > 0:04:40'not knowing what the staff are talking about'
0:04:40 > 0:04:42whilst they're discussing your child.
0:04:42 > 0:04:46As preparations are made to move Julia onto the trolley that will
0:04:46 > 0:04:50take her to the specialist care she needs, something goes wrong.
0:04:51 > 0:04:54The oxygen level in her blood is plummeting.
0:04:54 > 0:04:58It should be 90% but it's now down to 40.
0:04:59 > 0:05:02The saturation probe is OK and it's tracing OK.
0:05:02 > 0:05:05Yup. We're on the same meds as we were on over here.
0:05:05 > 0:05:08We're on less morphine than we were over there...
0:05:08 > 0:05:12Nurse Jamie is checking there's nothing they've overlooked. There's no obvious cause.
0:05:12 > 0:05:16'She wasn't responding to anything that we were doing and her oxygen levels weren't coming up.'
0:05:16 > 0:05:19That's the IV fluids but I've not started them yet.
0:05:19 > 0:05:25'It was quite a tense time, actually, on the ward when she became so sick,
0:05:25 > 0:05:27'and it happened so suddenly.'
0:05:27 > 0:05:34Apart from a cardiac problem, which we couldn't fix there and then,
0:05:34 > 0:05:38there were no other explanation for why she did what she did.
0:05:39 > 0:05:41Hi, Fatima, how are you?
0:05:42 > 0:05:46Um, we were just about getting ready to move with this patient
0:05:46 > 0:05:50but she just, about ten minutes ago,
0:05:50 > 0:05:52started dropping her saturations.
0:05:52 > 0:05:54Dr Sunny's now so concerned that she's getting advice
0:05:54 > 0:05:57from a consultant at Embrace headquarters.
0:05:57 > 0:06:00Julia's oxygen levels are still falling.
0:06:00 > 0:06:02Now 28%.
0:06:02 > 0:06:07On the bag in 15 litres of oxygen, she sounded like she had quite a lot of secretion,
0:06:07 > 0:06:10so we've suctioned quite a bit off her chest,
0:06:10 > 0:06:13which hasn't helped the situation.
0:06:13 > 0:06:15If this continues, she will die.
0:06:15 > 0:06:18Her brain is being starved of oxygen.
0:06:18 > 0:06:20'On the inside, I was actually panicking.'
0:06:20 > 0:06:22Yeah, equal air entry.
0:06:22 > 0:06:25'But on the outside, you have to remain professional.'
0:06:25 > 0:06:30OK, her sats are dropping, like, quite significantly.
0:06:30 > 0:06:35If your saturations are that low for a prolonged period, you're going to arrest.
0:06:36 > 0:06:39Right, so we've gone up on the background, we've given her a morphine bolus.
0:06:39 > 0:06:43Um, we're going to give her a ten mil of fluid bolus
0:06:43 > 0:06:48and I'm going to give her 0.1 milligrams per kilo of propranolol IV over ten minutes.
0:06:48 > 0:06:51Julia is given a cocktail of drugs.
0:06:51 > 0:06:54Her knees are raised to help her ailing heart.
0:06:54 > 0:06:58To everyone's relief, the oxygen levels in her blood slowly
0:06:58 > 0:07:01climb out of the danger zone. For now, at least.
0:07:02 > 0:07:04- That's better.- Yes!
0:07:05 > 0:07:10Hello. Just an update. Saturations are now 95%.
0:07:11 > 0:07:12Yes!
0:07:12 > 0:07:17- TRANSLATION:- 'We actually talked about the fact that we needed to prepare ourselves
0:07:17 > 0:07:20'for the worst. The situation was so critical.'
0:07:20 > 0:07:23We just didn't think Julia would recover.
0:07:26 > 0:07:29Thank you very much. Are you coming down to the ambulance with us
0:07:29 > 0:07:33- to see us load up or...?- No, we go car.- You're going in the car. OK.
0:07:33 > 0:07:36- Thank you very much.- Thank you. - Thank you.
0:07:36 > 0:07:39- See you later. Thank you. - Thank you very much.
0:07:41 > 0:07:46If we'd not got the saturations up, eventually, she would've passed away.
0:07:48 > 0:07:51The Embrace ambulance is a mobile intensive care unit.
0:07:51 > 0:07:54But Nurse Jamie and Dr Sunny are still worried that Julia will have
0:07:54 > 0:07:59another life-threatening episode before they reach the specialist hospital.
0:08:01 > 0:08:05And, to make things worse, today the journey will be twice as long as usual.
0:08:09 > 0:08:13Because Yorkshire's only children's heart unit is closed to surgical
0:08:13 > 0:08:17patients, the Embrace team is taking Julia to another specialist centre.
0:08:17 > 0:08:21It's 120 miles away, in Leicester.
0:08:22 > 0:08:26'It was a long journey. We knew that we were going to be travelling
0:08:26 > 0:08:28'for at least two to two and a half hours.
0:08:28 > 0:08:31'And you know that she has a potential to do
0:08:31 > 0:08:33'the same in the back of an ambulance,'
0:08:33 > 0:08:38where you don't have the support of lots of people around you,
0:08:38 > 0:08:43and, again, it's just yourself and a nurse and the driver with you.
0:08:44 > 0:08:48'I've had some very difficult transfers while I've been at Embrace
0:08:48 > 0:08:50'but she was very sick, and...
0:08:51 > 0:08:55'..both myself and Sunny were concerned'
0:08:55 > 0:08:59that we wouldn't make it to Glenfield Hospital.
0:08:59 > 0:09:04For two hours, baby Julia's survival depends on Nurse Jamie
0:09:04 > 0:09:07and Dr Sunny alone, with only the relatively limited resources
0:09:07 > 0:09:10available in the back of an ambulance.
0:09:11 > 0:09:16It's rare for a baby to lose the fight for life in the Embrace ambulance.
0:09:16 > 0:09:20Only one patient has died en-route since the service was set up nearly four years ago.
0:09:22 > 0:09:25Working in an intensive care environment,
0:09:25 > 0:09:28eventually, you're going to have a patient pass away
0:09:28 > 0:09:30that you're looking after.
0:09:31 > 0:09:35I've lost a number of patients whilst working on the wards.
0:09:35 > 0:09:38Thankfully, I've not lost any while I've been here at Embrace
0:09:38 > 0:09:41but...but it does happen. And it's something that's...
0:09:42 > 0:09:46It's never easy to cope with. Erm...
0:09:46 > 0:09:49But as long as you know that you've done everything
0:09:49 > 0:09:51you possibly could for the baby,
0:09:51 > 0:09:54done everything you can for the family...
0:09:55 > 0:09:58..then you can cope with it a lot better.
0:09:58 > 0:10:02Against the odds, Julia makes it safely to the hospital
0:10:02 > 0:10:04for the specialist care she needs.
0:10:04 > 0:10:08Hello, Louise, it's Sunny. Just to let you know we've arrived at Leicester.
0:10:09 > 0:10:11OK, thank you. Bye-bye.
0:10:13 > 0:10:17After two hours on the road, Julia now has to have more tests.
0:10:18 > 0:10:22'The first thing we're going to do is repeat the echocardiogram,
0:10:22 > 0:10:24'which is the scan of the heart.
0:10:24 > 0:10:27'So the cardiologists are on their way to do the scan now.'
0:10:27 > 0:10:32So, in the next 15, 20 minutes, we will know what is the status of bloodflow into the lungs.
0:10:33 > 0:10:36Julia has a complex heart condition.
0:10:36 > 0:10:39Instead of having two valves connecting her heart and lungs,
0:10:39 > 0:10:43she only has one. Her heart also has a hole in it.
0:10:45 > 0:10:47I was very concerned for Julia, actually.
0:10:47 > 0:10:51Even when we'd left her, I was concerned for parents
0:10:51 > 0:10:54and I was a little worried about how she'd progress.
0:10:54 > 0:10:57It's now nearly 11 pm.
0:10:57 > 0:10:59If Julia needs an operation straightaway,
0:10:59 > 0:11:03surgeons will work through the night to repair her heart.
0:11:16 > 0:11:17PHONE RINGS
0:11:17 > 0:11:20Good morning, Sheila speaking, how can I help?
0:11:20 > 0:11:24'Oh, hello, it's Lucy Hind from the paediatric registrars in Barnsley.'
0:11:24 > 0:11:27Embrace moves critically ill children in hospital
0:11:27 > 0:11:31to specialist centres, so they can get the expert treatment they need.
0:11:31 > 0:11:32OK, lovely.
0:11:32 > 0:11:36We do have another transfer but it's completely up to you whether you want to do it.
0:11:36 > 0:11:40The majority of their tiny patients are less than 28 days old.
0:11:41 > 0:11:45I just wanted to speak about transferring a baby from special care
0:11:45 > 0:11:47to NSU at the Children's Hopsital, please.
0:11:47 > 0:11:50Today, a call has come in from Barnsley Hospital
0:11:50 > 0:11:53about one-day-old baby Jake.
0:11:53 > 0:11:56Jake has stopped breathing several times since he was born
0:11:56 > 0:11:58and he can't feed.
0:11:58 > 0:12:01Doctors suspect he needs urgent surgery.
0:12:01 > 0:12:05An Embrace mobile intensive care unit is on its way,
0:12:05 > 0:12:08to move him from Barnsley to a specialist centre in Sheffield,
0:12:08 > 0:12:1015 miles away.
0:12:11 > 0:12:14Hi, it's only me. So we've just set off...
0:12:14 > 0:12:18Before joining Embrace, Nurse Jamie specialised in the critical care
0:12:18 > 0:12:22of babies under 28 days old, or as medics call them, neonates.
0:12:22 > 0:12:25Cheers, mate. See you later. Bye.
0:12:25 > 0:12:29'I love working with the sickest babies, looking after the children'
0:12:29 > 0:12:32who are really in need, and helping support the families.
0:12:32 > 0:12:35It's likely that Jake has a rare
0:12:35 > 0:12:39and potentially life-threatening condition called choanal atresia.
0:12:41 > 0:12:45When the nurses here have tried to pass feeding tube down through the nostril,
0:12:45 > 0:12:49it's come against some resistance. They've not been able to pass it.
0:12:49 > 0:12:53Now, that generally indicates that there's a blockage at the back of the nostrils.
0:12:53 > 0:12:56Infants are nasal breathers.
0:12:56 > 0:12:58They don't use their mouths to breathe very much,
0:12:58 > 0:13:02so...they need a clear nasal airway.
0:13:02 > 0:13:05If it's bilateral and both nostrils are blocked,
0:13:05 > 0:13:08it can be potentially life-threatening.
0:13:10 > 0:13:12You are going to be loved...
0:13:12 > 0:13:16Jake's mum has spent a harrowing first night with her newborn son.
0:13:17 > 0:13:21'They were literally climbing up walls because he couldn't feed.
0:13:21 > 0:13:24'That's, like, my main thing, not being able to feed him,'
0:13:24 > 0:13:28either bottle or breastfeeding, cos that's your main bit
0:13:28 > 0:13:31where you bond with your baby, when you feed them.
0:13:33 > 0:13:37I'll go get our incubator in and just have a little bit of a desat now.
0:13:37 > 0:13:39It isn't just feeding that's a problem.
0:13:39 > 0:13:42Every so often, Jake's tongue falls to the back of his throat
0:13:42 > 0:13:44and blocks his airway.
0:13:44 > 0:13:47When that happens, nurses have seconds to save him.
0:13:47 > 0:13:49JAKE CRIES
0:13:49 > 0:13:51That's OK. Sorry, sorry!
0:13:51 > 0:13:54Now you know his airway's open!
0:13:54 > 0:13:57'That were probably the most heartbreaking thing.
0:13:57 > 0:14:00'He were in so much distress and he was cross as well, like.'
0:14:00 > 0:14:02We will take good care of him.
0:14:02 > 0:14:05I just wanted somebody to help him, you know what I mean?
0:14:06 > 0:14:10We were concerned about his airway because of the noises he was making.
0:14:11 > 0:14:14While Jake's nose is blocked up with bone and tissue,
0:14:14 > 0:14:17Jamie knows there's a risk he may stop breathing again,
0:14:17 > 0:14:20and that could lead to brain damage or even death.
0:14:25 > 0:14:28With this little one, because his airway's compromised, yeah,
0:14:28 > 0:14:30it's a little bit more tense.
0:14:31 > 0:14:35'If he had closed off his airway in any way,
0:14:35 > 0:14:38'he would have suffocated.'
0:14:40 > 0:14:43Erm, so, he's got IV fluids running,
0:14:43 > 0:14:46because he's obviously not being fed.
0:14:46 > 0:14:49He's got some little ear defenders on to keep his ears safe
0:14:49 > 0:14:52while he's in the ambulance, cos it can get quite noisy.
0:14:52 > 0:14:55When you're a new mum all you want to do is be with your baby
0:14:55 > 0:14:58and obviously I couldn't be transported with him either
0:14:58 > 0:15:00because I'd had C-sections.
0:15:00 > 0:15:05Right, let's go, are you coming down with us? You're welcome to, if you...
0:15:06 > 0:15:11Just gutting that I weren't able to be with him.
0:15:11 > 0:15:15Obviously, because he were so distressed and everything.
0:15:15 > 0:15:17See you later, thank you very much.
0:15:21 > 0:15:24Dad is really feeling the pressure.
0:15:26 > 0:15:28Very straight-talking guy.
0:15:28 > 0:15:31Told us what he felt, told us how he were feeling.
0:15:31 > 0:15:33We knew he was a bit on edge.
0:15:33 > 0:15:37I think when people are used to being in control of their lives,
0:15:37 > 0:15:40to have a baby with choanal atresia like Jake,
0:15:40 > 0:15:41you'd feel completely lost.
0:15:43 > 0:15:46It's only 15 miles to Sheffield from Barnsley,
0:15:46 > 0:15:49but the team knows Jake's condition could deteriorate at any moment.
0:15:51 > 0:15:53And it's not long till their fears are realised.
0:15:53 > 0:15:55Jake's airway is blocked again.
0:15:57 > 0:16:00Going to have to get Mick to pull over.
0:16:00 > 0:16:02Mick, will you pull over, mate?
0:16:04 > 0:16:08I'm thinking, "He's stopped breathing, he's stopped breathing."
0:16:08 > 0:16:10Stopping on the hard shoulder of the motorway
0:16:10 > 0:16:13is something Embrace only does in a life-and-death situation.
0:16:15 > 0:16:17For us to safely give him some oxygen,
0:16:17 > 0:16:21we need the ambulance to come to a complete stop.
0:16:21 > 0:16:22You're fine there, you're fine there.
0:16:24 > 0:16:27The oxygen saturation in Jake's bloodstream - his sats -
0:16:27 > 0:16:29has dropped.
0:16:29 > 0:16:31His tiny brain is being starved of oxygen.
0:16:33 > 0:16:36We want to stop the ambulance as soon as it is safely possible.
0:16:36 > 0:16:41Had we been somewhere safer to stop, I might have asked a bit quicker.
0:16:42 > 0:16:45We were looking at the monitor, and we were looking at the baby
0:16:45 > 0:16:47and we'd seen a clear dip in saturations
0:16:47 > 0:16:49and a clear colour change in the patient.
0:16:51 > 0:16:53There was definitely an occlusion of his airway.
0:16:53 > 0:16:56He'd occluded his own airway by moving his head down.
0:16:57 > 0:17:00We've had a little look at him. He's pink.
0:17:00 > 0:17:04He doesn't seem to be having any problems at the moment, visually,
0:17:04 > 0:17:05but the monitor is telling us
0:17:05 > 0:17:10that his saturations are lower than we anticipated.
0:17:10 > 0:17:14I've just re-sited his oxygen sats probe
0:17:14 > 0:17:18and just giving him a little bit of oxygen.
0:17:20 > 0:17:22He's going to be all right now.
0:17:22 > 0:17:25Saturations are 94.
0:17:25 > 0:17:29It's a moment of relief for Jamie and Dr Al.
0:17:29 > 0:17:32Anything over 90 is a good saturation level.
0:17:32 > 0:17:35The extra oxygen seems to have done the trick.
0:17:35 > 0:17:36Jake's out of danger - for now.
0:17:38 > 0:17:42Everything looks perfect again. He's fast asleep.
0:17:42 > 0:17:45I panicked. It's just one of them things.
0:17:45 > 0:17:48I had to sit back and watch it, you know what I mean?
0:17:48 > 0:17:49You can't get involved.
0:17:49 > 0:17:51I just let them get on with their job
0:17:51 > 0:17:53and he were back to normal in no time.
0:17:56 > 0:18:00- Hello, it's Embrace. - Come through.- Thank you.
0:18:02 > 0:18:04The Jessop Wing Hospital
0:18:04 > 0:18:07is one of the biggest neo-natal units in the North of England.
0:18:07 > 0:18:10Specialists here will be able to confirm if Jake actually has
0:18:10 > 0:18:14choanal atresia and if he needs surgery to unblock his nose.
0:18:17 > 0:18:22I don't think he's very happy about me handling him right now.
0:18:25 > 0:18:28However, I'm afraid needs must occasionally.
0:18:30 > 0:18:34The ENT specialist uses an endoscope to look at the back of Jake's nose.
0:18:36 > 0:18:42It were awful, because I didn't want to see him in that state.
0:18:44 > 0:18:46Still not getting any progress there.
0:18:48 > 0:18:51But then again, I also couldn't leave him.
0:18:51 > 0:18:52Sorry, Jake.
0:18:54 > 0:18:56Babies are little bit different to us
0:18:56 > 0:18:59in as much as they are what's known as obligate nasal breathers.
0:18:59 > 0:19:01They don't really breathe very well through their mouth
0:19:01 > 0:19:03they prefer breathing through their nose.
0:19:03 > 0:19:06So when there's a blockage of the back of the nose,
0:19:06 > 0:19:08they get a bit stressed and they don't breathe very well
0:19:08 > 0:19:11because they keep being forced to breathe through their mouth
0:19:11 > 0:19:13because there's no airway through the nose.
0:19:16 > 0:19:19Part of what is supposed to happen in the womb is
0:19:19 > 0:19:21the back of the nose opens out so air can get in the front
0:19:21 > 0:19:23and go down the back and down into the lungs.
0:19:23 > 0:19:25But it's not happened in Jake's case.
0:19:25 > 0:19:27It looks like the back is still closed up.
0:19:27 > 0:19:28Our plan is, if my suspicions are right,
0:19:28 > 0:19:32we will need to do an operation on him to try to open it up
0:19:32 > 0:19:35and get him breathing through his nose again.
0:19:35 > 0:19:37If he can breathe through his nose,
0:19:37 > 0:19:40he'll be much happier feeding as well. That will be the plan.
0:19:40 > 0:19:43- Is that OK? It all seems fairly logical?- Yeah, yeah.
0:19:43 > 0:19:45OK, that's the plan for now.
0:19:46 > 0:19:50He went down for an X-ray on his nose and that confirmed it all.
0:19:50 > 0:19:52They knew what it were then.
0:19:52 > 0:19:55I think they knew before he'd had that X-ray what were wrong with him.
0:19:55 > 0:19:58But that were just to confirm and they could see then
0:19:58 > 0:20:02whether it were membrane or bone that they were actually dealing with.
0:20:02 > 0:20:03In the next few days,
0:20:03 > 0:20:07surgeons will try to clear the bone and membrane blocking Jake's nose.
0:20:07 > 0:20:08Soon after that,
0:20:08 > 0:20:12his mum and dad hope he'll be able to have his first proper feed.
0:20:12 > 0:20:14but his outlook is still uncertain.
0:20:18 > 0:20:22The last blast of winter has hit Yorkshire
0:20:22 > 0:20:24and the effects of the cold weather
0:20:24 > 0:20:26increase the Embrace medics' workload
0:20:26 > 0:20:31as they transfer sick children and babies to specialist hospitals.
0:20:31 > 0:20:32Chest infections
0:20:32 > 0:20:35and conditions like meningitis are all more common in winter.
0:20:38 > 0:20:40Premature babies -
0:20:40 > 0:20:43those born at least three weeks before they were due -
0:20:43 > 0:20:45are among the most vulnerable patients
0:20:45 > 0:20:47the Embrace medics have to keep alive.
0:20:47 > 0:20:50They can weigh as little as half a kilo.
0:20:51 > 0:20:55The teams move 600 of these tiny babies each year,
0:20:55 > 0:20:57whatever the weather.
0:20:57 > 0:21:01We've got a baby... we've got a circuit. We're ready.
0:21:05 > 0:21:09Today a call has come in from the Neo-natal Unit in Bradford
0:21:09 > 0:21:12about a baby who was born 16 weeks early
0:21:12 > 0:21:16and now has a life-threatening swelling in her bowel.
0:21:16 > 0:21:19She urgently needs to be assessed by surgeons at Leeds General Infirmary.
0:21:22 > 0:21:26Current weight is 1.944 kilograms. She's seven weeks old.
0:21:27 > 0:21:32Baby Mia also has chronic lung disease and a bleed on the brain.
0:21:32 > 0:21:35She's spent the first seven weeks of her life
0:21:35 > 0:21:37in neo-natal intensive care.
0:21:37 > 0:21:39The doctors have been to see us
0:21:39 > 0:21:46and said, you know, a 50-50 chance that she could survive,
0:21:46 > 0:21:48and she'd obviously have a lot of problems and they were going through
0:21:48 > 0:21:52all the problems she could have and disabilities and things like that.
0:21:52 > 0:21:55Even at seven weeks, nothing was for certain.
0:21:55 > 0:21:58Mia's health and everything hadn't really moved forward in that
0:21:58 > 0:22:00period of time.
0:22:00 > 0:22:03So it was still the fight that we were both having
0:22:03 > 0:22:05that she was still in intensive care.
0:22:06 > 0:22:09These babies really have a rocky road
0:22:09 > 0:22:14and we always tell the parents on the neo-natal units that you are going to
0:22:14 > 0:22:18be here for a while and you're going to have quite a difficult journey.
0:22:18 > 0:22:20Dr Mark is a specialist trainee
0:22:20 > 0:22:23who's working for Embrace for six months.
0:22:26 > 0:22:28This tummy really is quite big, actually.
0:22:28 > 0:22:32It's probably compressing on her chest quite a bit.
0:22:32 > 0:22:36And she's full of fluid. OK, sausage.
0:22:36 > 0:22:40- I think we should increase morphine now.- I'm sorry, I'm sorry.
0:22:40 > 0:22:42Baby Mia is in a lot of pain.
0:22:44 > 0:22:47We've just increased her morphine dose
0:22:47 > 0:22:49which should increase her comfort.
0:22:49 > 0:22:53We're going to give some muscle relaxant.
0:22:53 > 0:22:57That should also mean that she'll be much more comfortable.
0:22:59 > 0:23:04It made me feel guilty, thinking, why have I given birth so early?
0:23:06 > 0:23:07So a lot of it was guilt
0:23:07 > 0:23:10and then I think, I wish I could take her pain away.
0:23:13 > 0:23:18But it's awful, you just don't know, you feel really bad.
0:23:20 > 0:23:24Especially to see her in that much pain and things like that.
0:23:24 > 0:23:26But no...
0:23:30 > 0:23:33The bowel is a lot bigger than we would expect.
0:23:33 > 0:23:36It's filled with a lot more gas.
0:23:36 > 0:23:41That could mean that there is an obstruction at some point
0:23:41 > 0:23:44or the bowel is sick and it's not functioning properly.
0:23:44 > 0:23:47It's not squeezing along like it should do normally.
0:23:47 > 0:23:49Doctors suspect that Mia may have
0:23:49 > 0:23:55a bowel infection called necrotising enterocolitis or NEC,
0:23:55 > 0:23:58but this needs to confirmed by specialists in Leeds.
0:24:00 > 0:24:03Horrible, horrible condition.
0:24:03 > 0:24:06If not treated quickly, it can get much worse and result
0:24:06 > 0:24:11in the death of the bowel and possibly the death of the patient.
0:24:12 > 0:24:14If she's asleep, she'll flicker her eyelids,
0:24:14 > 0:24:17but normally she opens her eyes.
0:24:17 > 0:24:19She had her eyes wide open for ages.
0:24:24 > 0:24:25It was the fear of,
0:24:25 > 0:24:28"Is this the end for her, is she going to pull through?"
0:24:29 > 0:24:32She's tiny, so she's gone through all of this
0:24:32 > 0:24:35and then to actually end up over there for surgery now,
0:24:35 > 0:24:39you're on tenterhooks because you're hoping it's the best thing for her.
0:24:41 > 0:24:44Hi, there, it's Mark, just letting you know we just left Bradford.
0:24:46 > 0:24:47Right, speak to you soon. Bye.
0:24:49 > 0:24:52Mia's parents are having an incredibly difficult time.
0:24:52 > 0:24:54They're in the middle of moving house
0:24:54 > 0:24:58and their 3-year-old son Ethan is also unwell.
0:24:58 > 0:25:01It's horrible. I never want to go through it again in my life.
0:25:04 > 0:25:08I think you must block it out. I think I did. I think I was scared.
0:25:09 > 0:25:12You make jokes and things, don't you, when you're feeling scared
0:25:12 > 0:25:14and things like that?
0:25:14 > 0:25:16- Stress from all angles? - You're telling me.
0:25:16 > 0:25:19I think I'll be grey by the end of the year.
0:25:28 > 0:25:31Mia was very settled throughout the journey.
0:25:31 > 0:25:34She didn't require us to make any interventions en route.
0:25:34 > 0:25:37Her observations were continually stable.
0:25:37 > 0:25:39She's got a number of problems
0:25:39 > 0:25:43including chronic lung disease for which she is ventilator dependent.
0:25:43 > 0:25:45She's been very well sedated,
0:25:45 > 0:25:48she is just starting to come round a little bit from the sedation now.
0:25:48 > 0:25:51We've had an ongoing problem, really,
0:25:51 > 0:25:55with not tolerating her feeds with intermittent abdominal distension.
0:25:55 > 0:25:58She's never actually got to full feed.
0:25:59 > 0:26:01We are obviously very worried about Mia
0:26:01 > 0:26:04and about her abdomen in particular.
0:26:04 > 0:26:08Our colleagues in Bradford can do most of the things we do here.
0:26:08 > 0:26:11But what we've got here is our surgeons.
0:26:12 > 0:26:17Over the next few hours, we'll get Mia seen by one of our surgeons.
0:26:17 > 0:26:20I'll see her again with the neo-natal and medical team
0:26:20 > 0:26:23and combine together with the team that we use to look after
0:26:23 > 0:26:26babies that may have surgical problems.
0:26:27 > 0:26:28The surgeon, he came up
0:26:28 > 0:26:31and he had obviously seen a lot of the x-rays from what
0:26:31 > 0:26:33they'd sent over from Bradford
0:26:33 > 0:26:36and that's when he said she would be going to surgery first thing in the morning,
0:26:36 > 0:26:40he needed to see what is going inside basically.
0:26:42 > 0:26:46Mia's parents now face another agonising 24 hours.
0:26:46 > 0:26:50Tomorrow morning, their tiny baby, who weighs just 2 kilos,
0:26:50 > 0:26:53will have major surgery on her bowel.
0:26:59 > 0:27:02At the Children's Heart Unit in Leicester,
0:27:02 > 0:27:05baby Julia is still waiting to have an operation.
0:27:11 > 0:27:15She was brought here from Hull by the Embrace team ten days ago,
0:27:15 > 0:27:18because it was thought she needed emergency surgery.
0:27:19 > 0:27:21She couldn't go to the Heart Unit in Leeds
0:27:21 > 0:27:23as it wasn't accepting surgical patients
0:27:23 > 0:27:27while an investigation was being carried out into mortality rates.
0:27:30 > 0:27:35She is very stable on the medical treatment she is on at the moment.
0:27:36 > 0:27:38But that can change very quickly.
0:27:39 > 0:27:42Julia's mum is staying with her in hospital,
0:27:42 > 0:27:46but her dad is 120 miles away at home in Hull
0:27:46 > 0:27:47looking after her two brothers.
0:27:48 > 0:27:50Dad, are you still with us?
0:27:54 > 0:27:57Julia still desperately needs an operation
0:27:57 > 0:27:58to repair her damaged heart.
0:28:01 > 0:28:04There are ten specialist centres in England where this could be done,
0:28:04 > 0:28:05although, in 2012,
0:28:05 > 0:28:09a government review recommended this should be reduced to seven.
0:28:11 > 0:28:12Under these plans,
0:28:12 > 0:28:16both Leeds and Leicester would stop doing heart operations -
0:28:16 > 0:28:19a decision being fiercely opposed by campaigners.
0:28:21 > 0:28:23If they did close,
0:28:23 > 0:28:26long journeys for patients like Julia would be the norm.
0:28:30 > 0:28:3211 days ago,
0:28:32 > 0:28:36children's heart surgery was temporarily suspended in Leeds.
0:28:36 > 0:28:38Now, though, the unit has been given a reprieve.
0:28:41 > 0:28:43TV: 'Heart surgery on children
0:28:43 > 0:28:45'will resume at Leeds General Infirmary tomorrow
0:28:45 > 0:28:49'after it was suspended over concerns about higher than usual death rates.
0:28:49 > 0:28:51'Operations were stopped last month
0:28:51 > 0:28:53'while investigations were carried out.
0:28:53 > 0:28:56'That decision was criticised by some
0:28:56 > 0:28:59'who said the figures the concerns were based on were incomplete.
0:28:59 > 0:29:01'NHS England has said it will continue to explore the issues
0:29:01 > 0:29:03'raised about the unit.'
0:29:05 > 0:29:08Despite the fact that Leeds has re-opened,
0:29:08 > 0:29:12doctors decide to go ahead with Julia's operation in Leicester.
0:29:12 > 0:29:16They think it's too risky for her to make another hundred mile journey.
0:29:19 > 0:29:23TRANSLATION: Because we had already spent one month in Leicester,
0:29:23 > 0:29:26it was a period during which she recovered
0:29:26 > 0:29:30and was being prepared for the surgery and that took quite a while.
0:29:30 > 0:29:32I thought she was feeling safe there
0:29:32 > 0:29:36and I was happy with the way the doctors were looking after Julia.
0:29:36 > 0:29:39I thought the medical attention she was getting was the best.
0:29:43 > 0:29:45Julia has a complex heart condition,
0:29:45 > 0:29:49which means the surgery is intricate and takes several hours.
0:29:51 > 0:29:54She's got two conditions combined, which we see sometimes.
0:29:54 > 0:29:57One of which is called Tetralogy of Fallot,
0:29:57 > 0:29:59and the other one is called complete AVSD,
0:29:59 > 0:30:02so what that means is that the middle of the heart didn't form properly
0:30:02 > 0:30:05and there's a big hole where it should be,
0:30:05 > 0:30:08and it also means that the lung artery is narrow,
0:30:08 > 0:30:11so what they are doing at the moment is patching that defect,
0:30:11 > 0:30:13constructing two valves in the middle of the heart
0:30:13 > 0:30:15where there's currently one,
0:30:15 > 0:30:18and enlarging the way out for blood to go to the arteries,
0:30:18 > 0:30:20to the lungs, so she can be pink again.
0:30:21 > 0:30:25At the moment what you can see is the hole in the middle of the heart,
0:30:25 > 0:30:26the complete AVSD.
0:30:26 > 0:30:29Mr Lotto's feeling underneath the valve
0:30:29 > 0:30:32to see where he's going to put his stitches.
0:30:32 > 0:30:35Without the surgery, her life would be very limited
0:30:35 > 0:30:39because the amount of blood flowing around the lungs is not really enough
0:30:39 > 0:30:41and the heart would be damaged by the amount of blood
0:30:41 > 0:30:44flowing across the hole in the heart, so for her,
0:30:44 > 0:30:48this kind of surgery is her only chance of a relatively normal life.
0:30:51 > 0:30:54The complex operation is a success,
0:30:54 > 0:30:57but the next few days are critical.
0:30:59 > 0:31:02For the next steps, she will stay here overnight to make sure
0:31:02 > 0:31:04that everything is really OK.
0:31:04 > 0:31:06HE TRANSLATES INTO POLISH
0:31:08 > 0:31:10This is a safe place for her to be now.
0:31:15 > 0:31:18The first post-operative period is very encouraging.
0:31:18 > 0:31:19She's just been extubated,
0:31:19 > 0:31:21which means that now
0:31:21 > 0:31:23she's breathing on her own,
0:31:23 > 0:31:27she is fully awake, so that is a good first step.
0:31:28 > 0:31:32The important thing, you need to see how the heart beats
0:31:32 > 0:31:38and how the left-side valve that we created works,
0:31:38 > 0:31:42which is the major question mark that we have about the outcome.
0:31:45 > 0:31:48I haven't got the crystal ball, so we don't know yet.
0:31:48 > 0:31:50We need to follow her, Julia, up.
0:31:53 > 0:31:56120 miles away from Leicester,
0:31:56 > 0:32:00in Hull, it's four months since Julia's heart operation.
0:32:01 > 0:32:04Two weeks after surgeons repaired the hole in her heart,
0:32:04 > 0:32:06she was allowed to go home.
0:32:06 > 0:32:10TRANSLATION: She's a very cheerful and polite child.
0:32:10 > 0:32:11She sleeps throughout the night.
0:32:11 > 0:32:14She likes playing and she plays with us a lot
0:32:14 > 0:32:18because we live far away from my parents.
0:32:18 > 0:32:22She likes to attract everyone's attention and she's a bit bossy.
0:32:22 > 0:32:24Like mama.
0:32:24 > 0:32:25- TRANSLATION:- Just like her mum.
0:32:27 > 0:32:31Everything's OK. We really love her
0:32:31 > 0:32:34and we're really happy the whole story ended the way it did.
0:32:47 > 0:32:50Meanwhile, in Sheffield at the Children's Hospital,
0:32:50 > 0:32:54another Embrace patient is waiting to have major surgery.
0:32:54 > 0:32:57Baby Jake is having difficulty breathing
0:32:57 > 0:32:59because his nose is blocked with bone and tissue.
0:33:01 > 0:33:06They're going to basically use a telescope to look through his mouth,
0:33:06 > 0:33:08so they can see the back of his nose,
0:33:08 > 0:33:11and then they're going to make an opening in the back of his nose
0:33:11 > 0:33:14so that he's able to breathe through it.
0:33:14 > 0:33:17I'm Neil, the ENT consultant.
0:33:17 > 0:33:21Jake will be in the operating theatre for just over an hour.
0:33:21 > 0:33:24Good. Shall we send? Fantastic.
0:33:24 > 0:33:25JAKE CRIES
0:33:25 > 0:33:27Aw!
0:33:27 > 0:33:30What we're going to do today is unblock the back of Jake's nose
0:33:30 > 0:33:33with a combination of some dilators and a drill, just to remove
0:33:33 > 0:33:37some of the bone that's blocking the back of the nose there.
0:33:42 > 0:33:45I just couldn't wait for the day they operated on him,
0:33:45 > 0:33:48because it were awful, you know, having to see him
0:33:48 > 0:33:53struggle to breathe and watching his chest go up and down.
0:33:53 > 0:33:54It were awful, really.
0:33:56 > 0:33:59It were kind of relief that he were going into the theatre
0:33:59 > 0:34:01and getting it sorted, really.
0:34:04 > 0:34:07- See you shortly. - See you later, bye.- See you later.
0:34:07 > 0:34:09We will put the endoscope into his mouth and look back
0:34:09 > 0:34:13at the back of his nose, and then pass our instruments down
0:34:13 > 0:34:17through his nose to widen the passages at the back there.
0:34:17 > 0:34:19And then at the end of the operation
0:34:19 > 0:34:22I'm going to put a couple of soft plastic tubes into his nose
0:34:22 > 0:34:24which are going to sit there for a few weeks or so
0:34:24 > 0:34:26to allow him a breathing passage
0:34:26 > 0:34:30and allow everything to heal up, hopefully without closing up again.
0:34:31 > 0:34:35This is a perilously delicate operation.
0:34:37 > 0:34:39We are very close to the base of the skull
0:34:39 > 0:34:43and we are very close to the base of the brain and the brainstem.
0:34:43 > 0:34:46That's at the top of where we are operating.
0:34:46 > 0:34:50At the side of where we're operating there are lots of big veins.
0:34:50 > 0:34:52If we go too far to the side,
0:34:52 > 0:34:55we run in the problem of getting troublesome bleeding.
0:34:55 > 0:34:58And obviously we don't want to go too far up and damage the base
0:34:58 > 0:35:02of his skull because that would lead to very significant problems.
0:35:02 > 0:35:07One baby in 10,000 is born with the condition choanal atresia.
0:35:07 > 0:35:09Good, so now we've got everything in position,
0:35:09 > 0:35:11I can see the back of the nose.
0:35:11 > 0:35:13Have you got a damp cloth there?
0:35:14 > 0:35:20Instead of nice holes there, we've got some membrane covering them.
0:35:22 > 0:35:25So what I'm going to do first up
0:35:25 > 0:35:28is pass a little dilator through the nose...
0:35:31 > 0:35:32..to just perforate that.
0:35:34 > 0:35:37There we go. The dilator is just coming through there now
0:35:37 > 0:35:39and I can see just by feeling it
0:35:39 > 0:35:41that it's mostly membrane causing that.
0:35:43 > 0:35:46We'll do a little bit more when we are...
0:35:46 > 0:35:47when we've done a bit of drilling.
0:35:50 > 0:35:54So now you can see I've established some airways there
0:35:54 > 0:35:56and I'm just going to use my little drill
0:35:56 > 0:35:58just to widen those a little bit.
0:36:00 > 0:36:04I'm just going to start to drill away some of that bone.
0:36:04 > 0:36:06DRILL BUZZES
0:36:19 > 0:36:20Perfect. That's great.
0:36:20 > 0:36:23We're going to put our stents in,
0:36:23 > 0:36:26our splints in just to keep things open.
0:36:28 > 0:36:30So I've put the splints in here
0:36:30 > 0:36:33and we can see them just sitting in the back
0:36:33 > 0:36:37and I'm now going to just secure them in place
0:36:37 > 0:36:39and make a little airway...
0:36:41 > 0:36:43..for Jake to breathe through.
0:36:43 > 0:36:47He's now got some tubes in there which should enable him to breathe.
0:36:47 > 0:36:49The operation went really fantastically well.
0:36:49 > 0:36:51I'm very pleased with the way it went.
0:36:53 > 0:36:55But while the stents are in his nose,
0:36:55 > 0:36:58Jake will still have difficulty feeding.
0:36:58 > 0:37:01It could be many weeks before he has his first proper bottle.
0:37:10 > 0:37:1335 miles away, at Leeds General Infirmary,
0:37:13 > 0:37:15two months after a major operation,
0:37:15 > 0:37:19baby Mia is just starting to breath on her own.
0:37:22 > 0:37:25- OK, sausage.- I'll just increase that morphine now.
0:37:25 > 0:37:29The Embrace team brought Mia to Leeds from Bradford Royal Infirmary
0:37:29 > 0:37:32when her stomach became dangerously swollen.
0:37:32 > 0:37:35Thanks a lot, cheers. See you later.
0:37:35 > 0:37:38So how is Mia today? How's she doing?
0:37:38 > 0:37:41She seems to be doing really well this morning.
0:37:41 > 0:37:44Mia had suffered a chronic infection
0:37:44 > 0:37:48and a specialist surgeon had to remove a section of her bowel.
0:37:48 > 0:37:51You don't know if she's going to survive the surgery,
0:37:51 > 0:37:53so you're panicking about all that,
0:37:53 > 0:37:57and then when he came up and he said, you know, it went really well,
0:37:57 > 0:38:00and obviously this is what he'd found
0:38:00 > 0:38:02and the bowel had been perforated
0:38:02 > 0:38:04and he had to remove, was it 10cm?
0:38:04 > 0:38:08- 10cm, I think he said. - ..of basically dead bowel.
0:38:10 > 0:38:15Mia has a temporary colostomy bag so that her bowel can recover.
0:38:15 > 0:38:19But the surgeon now wants to join her intestines up again.
0:38:19 > 0:38:20Food that she eats obviously
0:38:20 > 0:38:22comes out through these,
0:38:22 > 0:38:26drops into the bag from there, such as you would, pooing as normally.
0:38:26 > 0:38:29That's all just her bowel, so that will be all reconnected,
0:38:29 > 0:38:32and then everything will work as normal.
0:38:33 > 0:38:36Mia was born 16 weeks prematurely
0:38:36 > 0:38:38and as well as her bowel problems,
0:38:38 > 0:38:42she is also being treated for lung disease and a bleed on her brain.
0:38:42 > 0:38:44Are you ready for surgery?
0:38:45 > 0:38:47Are you? Are you?
0:38:47 > 0:38:50- When she gets home.- What's he doing?
0:38:52 > 0:38:56Mia's mum and dad want her older brother Ethan to stay with her
0:38:56 > 0:38:59right up until she goes into the operating theatre.
0:38:59 > 0:39:03'He's understanding as best a three-year-old can
0:39:03 > 0:39:06'what we're doing and why we are in hospital, not him thinking'
0:39:06 > 0:39:10"Why is Mummy and Daddy not with me? What's happening to me?
0:39:10 > 0:39:13"Why am I with Grandma again?" And stuff like that.
0:39:13 > 0:39:15So he was always a part of it
0:39:15 > 0:39:19and we always tried to explain to him what you can.
0:39:25 > 0:39:27- ETHAN:- Where's she going?
0:39:27 > 0:39:31She's got to go to surgery, where they will put her to sleep
0:39:31 > 0:39:33and hopefully fix her.
0:39:37 > 0:39:39I'm a bit apprehensive, scared
0:39:39 > 0:39:42cos obviously she's going into surgery, you know, things can happen
0:39:42 > 0:39:47'but also happy that she's getting it done.
0:39:47 > 0:39:49'She's a step closer to going home.'
0:39:53 > 0:39:55This is a critical time for Mia.
0:39:55 > 0:39:59Surgeons are not sure if her bowel is ready to be reconnected, but
0:39:59 > 0:40:04she's had the colostomy bag for over two months and it's started leaking.
0:40:04 > 0:40:08They just had to do it because I think it was making her worse,
0:40:08 > 0:40:11so they reconnected her up, hoping for the best.
0:40:14 > 0:40:17If this delicate operation isn't successful,
0:40:17 > 0:40:19then on top of her other medical conditions,
0:40:19 > 0:40:23Mia may also have to use a colostomy bag for the rest of her life.
0:40:28 > 0:40:32At Embrace Headquarters near Barnsley, details are coming in
0:40:32 > 0:40:34from Doncaster Royal Infirmary
0:40:34 > 0:40:37about a child with long-standing health problems
0:40:37 > 0:40:39who's stopped breathing after having a fit.
0:40:39 > 0:40:41'Four-year-old girl with thermal palsy.
0:40:41 > 0:40:45'She had chronic lung disease and severe tracheobronchial malacia
0:40:45 > 0:40:48'and had a tracheostomy, but she also has hearing impairment,
0:40:48 > 0:40:51'requiring hearing aids, and visual impairment.
0:40:51 > 0:40:54'I think she's blind in her left eye.'
0:40:54 > 0:40:56Millie was born 12 weeks prematurely
0:40:56 > 0:41:00and spent the first 18 months of her life in intensive care.
0:41:04 > 0:41:05For the last two years,
0:41:05 > 0:41:09Millie has been well enough to be cared for at home, until today.
0:41:09 > 0:41:11She's had a fit at home.
0:41:11 > 0:41:13I think she's had a couple of fits before
0:41:13 > 0:41:16but they've been fairly short acting.
0:41:16 > 0:41:18The paramedics have obviously attended at home
0:41:18 > 0:41:21and given her some diazepam and it stopped her breathing, basically.
0:41:21 > 0:41:24You want to sit in the front? Yeah, that's fine.
0:41:24 > 0:41:28Ann is one of Embrace's most experienced critical care nurses
0:41:28 > 0:41:30and has seen the problems
0:41:30 > 0:41:34that premature babies like Millie can have later in life.
0:41:34 > 0:41:37It's almost impossible to know how many are going to be left with
0:41:37 > 0:41:40what degree of severity of problems.
0:41:40 > 0:41:43You get some that are born really early that do really well,
0:41:43 > 0:41:46and some that are born a little bit later on, that you think
0:41:46 > 0:41:49are sort of over that bit of a cusp that then go on to have problems.
0:41:50 > 0:41:54It should take 40 minutes to get to Doncaster Royal Infirmary
0:41:54 > 0:41:58from Embrace Headquarters, but a traffic jam has impeded progress.
0:41:58 > 0:42:00OK. That's fine. Paul!
0:42:00 > 0:42:03Lights and sirens to get through traffic, please.
0:42:03 > 0:42:05SIREN WAILS
0:42:09 > 0:42:12Ann and the team will move Millie from Doncaster
0:42:12 > 0:42:14to Sheffield Children's Hospital.
0:42:16 > 0:42:18Oh, bless. Hello, Millie.
0:42:18 > 0:42:21Fast asleep? OK.
0:42:21 > 0:42:23She's been completely well in herself,
0:42:23 > 0:42:28and then at about 12 o'clock her family said she started fitting,
0:42:28 > 0:42:31symmetrical jerking movements of her arms and legs,
0:42:31 > 0:42:34and she also desaturated and became tachycardic.
0:42:36 > 0:42:37Hello, sweetheart.
0:42:37 > 0:42:40'I think when you've got a little child like Millie who's
0:42:40 > 0:42:44'been through such a lot, the parents are fantastic advocates for them.'
0:42:44 > 0:42:47- Just have a listen to her chest. - I'll let you have a look at her.
0:42:47 > 0:42:49I'll have a quick word with mum. Yeah, OK.
0:42:49 > 0:42:52'They've battled, probably, since she was born.'
0:42:52 > 0:42:55Yeah, that's fine. All right.
0:42:55 > 0:42:59Right, so, have we moved her before, as an Embrace team?
0:42:59 > 0:43:02- Yes.- We have? Yes?- Some years ago.
0:43:02 > 0:43:04So we're just going to have a good look at her, OK?
0:43:04 > 0:43:06Her temperature has gone up
0:43:06 > 0:43:08more than it was, so we'll give her something to bring that down.
0:43:08 > 0:43:11She's already had some antibiotic cover.
0:43:12 > 0:43:15We've had us ups and downs.
0:43:15 > 0:43:18We've been sometimes well, sometimes not,
0:43:18 > 0:43:20but for the last two years,
0:43:20 > 0:43:24she's been well in herself in every way.
0:43:24 > 0:43:26Can I just have a listen to the chest, please?
0:43:27 > 0:43:30It's the mum and dad that know the nitty-gritty,
0:43:30 > 0:43:33and they know their child better than anybody.
0:43:33 > 0:43:37She has got problems, so trying to decide what is normal for her
0:43:37 > 0:43:40and what we were dealing with at the time was very important,
0:43:40 > 0:43:43so it's good to get that conversation going with Mum and Dad quite early
0:43:43 > 0:43:48to say, "Is this normal for Millie or is this something we need to be worried about?"
0:43:48 > 0:43:52When she's well, in terms of movement, how much does she do?
0:43:52 > 0:43:54- She's very active. - She's very active, OK.
0:43:54 > 0:43:58- She's always moving.- On the go? - The arms and legs.- Yes, fine.
0:44:02 > 0:44:04Her numbers on the monitor are OK.
0:44:04 > 0:44:06I'm concerned that she's not breathing for herself
0:44:06 > 0:44:09and she's not woken up, but the other numbers are looking better.
0:44:09 > 0:44:12I'd just like to see her a little more lively.
0:44:12 > 0:44:14She was kind of moving her arms and legs a little bit
0:44:14 > 0:44:16when we were doing things to her,
0:44:16 > 0:44:18but you know she's quite an active child.
0:44:18 > 0:44:23So, she's not your Millie, is she? At the moment. OK.
0:44:24 > 0:44:29The team is using suction to clear the mucus from Millie's lungs.
0:44:29 > 0:44:34Good girl. All right. Good girl. Good girl.
0:44:34 > 0:44:37The staff here were saying they've not had much secretions,
0:44:37 > 0:44:40but the chest X-ray looks a bit patchy, particularly on the left.
0:44:40 > 0:44:42So sometimes, with Jenny doing the bagging, you can
0:44:42 > 0:44:44just loosen stuff that's there,
0:44:44 > 0:44:46and I'm just trying to get it up basically.
0:44:48 > 0:44:51INDISTINGUISHABLE SPEECH
0:44:51 > 0:44:54Yeah, she'll be wanting a drink.
0:44:54 > 0:44:56She'll be like, "Is it dinner time yet?"
0:44:56 > 0:45:00If you want a bottle then you have to wake up cos your bottle's there.
0:45:02 > 0:45:04Isn't it? Yeah.
0:45:04 > 0:45:08She is proud deaf as well as, like, she can only see through one eye.
0:45:10 > 0:45:13And... Yeah, she's a little fater.
0:45:14 > 0:45:16Come on.
0:45:16 > 0:45:19You can have one of those really big cuddles.
0:45:20 > 0:45:24Millie's dad spends all his time with her.
0:45:24 > 0:45:27You know I'll take good care of her, don't you?
0:45:27 > 0:45:29I know. I know.
0:45:29 > 0:45:31HE SOBS
0:45:31 > 0:45:36Yeah. She's toughie though. Think what she's been through before.
0:45:36 > 0:45:39- It's knowing, isn't it? Really.- Hmm.
0:45:39 > 0:45:42But he numbers are good.
0:45:42 > 0:45:46You never know, she might be awake in a couple of hours' time.
0:45:46 > 0:45:48They've done a good job with her here,
0:45:48 > 0:45:51but she's going to a unit that they know her well.
0:45:51 > 0:45:54- It's just that she's not herself. - I know.
0:45:54 > 0:45:56I know.
0:45:56 > 0:45:59I'm used to her fit and well all the time.
0:45:59 > 0:46:01- So, to see her like this. - Flat on her back.
0:46:01 > 0:46:04But you know what kids are like. You've seen it, haven't you?
0:46:04 > 0:46:06They go downhill really quickly
0:46:06 > 0:46:08and then they come back up really quickly...
0:46:08 > 0:46:11and that's what they do, isn't it?
0:46:14 > 0:46:16It'll take 45 minutes to get to the team
0:46:16 > 0:46:18at Sheffield Children's Hospital.
0:46:18 > 0:46:21It's been treating Millie since she was tiny for the complications
0:46:21 > 0:46:24that have arisen due to her premature birth.
0:46:25 > 0:46:28I've been a nurse for many years, but I'm a mum.
0:46:28 > 0:46:31I think to see your child go through that,
0:46:31 > 0:46:33my heart absolutely goes out to them.
0:46:33 > 0:46:36And sometimes I do stop and think, "If it was mine",
0:46:36 > 0:46:39and I kind of have to stop myself from doing that till later on
0:46:39 > 0:46:41because I have to focus on the job.
0:46:41 > 0:46:44But as a parent, it's hard to see them go through it.
0:46:50 > 0:46:53Sheffield has the only dedicated stand alone children's
0:46:53 > 0:46:55hospital in Yorkshire.
0:46:55 > 0:46:57Every year, the specialist doctors
0:46:57 > 0:47:00and nurses here treat over 100,000 children.
0:47:00 > 0:47:04Hello. Who's that?
0:47:04 > 0:47:06Hello.
0:47:06 > 0:47:07Millie.
0:47:09 > 0:47:13Millie has already spent 18 months of her young life here,
0:47:13 > 0:47:17and her family are keen that this time her stay will be short.
0:47:18 > 0:47:23Got Jordan who's 18, got Courtney who's 15,
0:47:23 > 0:47:26and Alicia's who's 11.
0:47:27 > 0:47:33And Jordan's girlfriend always comes with us as well, Amy,
0:47:33 > 0:47:36and they all stand by Millie 100%...
0:47:36 > 0:47:39and her dad Steve.
0:47:41 > 0:47:43You all right, missy?
0:47:43 > 0:47:45Eh? Yeah.
0:47:47 > 0:47:53She's been in overnight and she's slept for 18 hours solid.
0:47:53 > 0:47:58She woke up this morning a bit grumpy, a bit not herself,
0:47:58 > 0:48:01but she's on the mend now and she's doing well.
0:48:01 > 0:48:04So, hopefully, by tomorrow we'll have her home.
0:48:06 > 0:48:10The whole family is supposed to go on holiday at the end of the week.
0:48:10 > 0:48:13It looks like Millie may be well enough for it still to go ahead.
0:48:18 > 0:48:21Meanwhile, there's good news for another Embrace patient
0:48:21 > 0:48:23at Sheffield Children's Hospital.
0:48:24 > 0:48:27Baby Jake is about to have the plastic stents taken
0:48:27 > 0:48:32out of his nose so he will be able to have his first proper feed.
0:48:32 > 0:48:35- Hi.- Come on in. Have a seat.
0:48:35 > 0:48:39- So, how is he?- He's been spot on. - Good. Good.
0:48:39 > 0:48:41- He's feeding OK?- Yeah.
0:48:41 > 0:48:43He just gargles a lot.
0:48:43 > 0:48:46So, what I want to do today is take the tubes out. OK.
0:48:46 > 0:48:49See how he gets on with no tubes in.
0:48:49 > 0:48:51Fingers crossed we've left it in long enough for it all to
0:48:51 > 0:48:53heal up, so it doesn't immediately scar.
0:48:55 > 0:48:58Four weeks ago, Jake had an operation to remove the bone
0:48:58 > 0:49:02and tissue that was blocking the back of his nose.
0:49:02 > 0:49:04BABY CRIES
0:49:04 > 0:49:06I don't want to pull the tubes out without the stitch cos
0:49:06 > 0:49:09then that will leave the stitch in the back of his nose.
0:49:10 > 0:49:12Come on, mister.
0:49:12 > 0:49:14Come on.
0:49:14 > 0:49:17LAUGHTER
0:49:19 > 0:49:21- Come on, little man. - Come on.
0:49:23 > 0:49:24There we go.
0:49:24 > 0:49:28- All done. - There we go. Sorry about that.
0:49:28 > 0:49:31- Come on.- Oh. Do you want to give him a bottle?
0:49:33 > 0:49:35His nostrils will not always be that big.
0:49:35 > 0:49:37SHE LAUGHS
0:49:37 > 0:49:39He's feeding really nicely,
0:49:39 > 0:49:41he's breathing beautifully through his nose.
0:49:41 > 0:49:45That's really pleasing. He's fantastic.
0:49:45 > 0:49:47You're bonding with your baby,
0:49:47 > 0:49:49getting to feed him for the first time,
0:49:49 > 0:49:52and obviously we had a lot of trouble when he were first born.
0:49:52 > 0:49:57Chris did his first feed, that's when we found out his nose were blocked.
0:49:57 > 0:49:59The main reason to do this is so that he can be feeding
0:49:59 > 0:50:02and thriving, and put some weight on and grow nicely.
0:50:02 > 0:50:04SHE LAUGHS Thank you very much.
0:50:04 > 0:50:06Not at all. Nice to see you again.
0:50:08 > 0:50:11There's a chance that Jake's nose will become blocked up again,
0:50:11 > 0:50:15in which case, he'll need ore surgery.
0:50:17 > 0:50:20Back at Embrace Headquarters near Barnsley,
0:50:20 > 0:50:23a team has been dispatched to collect a premature baby
0:50:23 > 0:50:27who's been critically ill for most of her short life.
0:50:27 > 0:50:30Embrace first moved baby Mia when she was seven weeks old
0:50:30 > 0:50:35and needed lifesaving bowel surgery at Leeds General Infirmary.
0:50:36 > 0:50:39Now, nearly three months later,
0:50:39 > 0:50:42Mia's finally well enough to be transferred to her local hospital
0:50:42 > 0:50:4520 miles away in Harrogate.
0:50:45 > 0:50:47Cos we've been here quite a while now, it's like, "Ooh...
0:50:47 > 0:50:49"I wish they were coming for me."
0:50:49 > 0:50:52I've been saying that for weeks now.
0:50:52 > 0:50:54I wish they were coming for me.
0:50:54 > 0:50:57I've seen them coming in loads of times and...
0:50:57 > 0:50:58now it's our turn.
0:51:00 > 0:51:04Like many premature babies, Mia has several health problems,
0:51:04 > 0:51:08the most critical being her damaged bowel.
0:51:08 > 0:51:10There were fears that she might need a colostomy bag,
0:51:10 > 0:51:14but surgeons have successfully reconnected her intestine.
0:51:15 > 0:51:18Five months on Thursday, aren't we, madam?
0:51:19 > 0:51:21You're one of the old lasses now...
0:51:21 > 0:51:23aren't you? Eh?
0:51:26 > 0:51:29It went well and she started to feed.
0:51:29 > 0:51:32It was amazing for us, changing her dirty nappy.
0:51:32 > 0:51:34It was just one of them things that, for her,
0:51:34 > 0:51:36we didn't know if she'd ever get to that stage.
0:51:36 > 0:51:39AMBULANCE BEEPS
0:51:39 > 0:51:43She's never seen the bright light outside.
0:51:43 > 0:51:45Erm...
0:51:45 > 0:51:48She's only been in a pram once.
0:51:54 > 0:51:57She's probably thinking, "Where's my dinner?"
0:51:57 > 0:51:59'She's a fighter.
0:51:59 > 0:52:03'That's all she's done, basically, since she's been born.'
0:52:04 > 0:52:08She's fought from day one and carried on fighting,
0:52:08 > 0:52:12and I think she's going to be fighting for a long period of time
0:52:12 > 0:52:15cos everything that there is with the chronic lung disease
0:52:15 > 0:52:16and everything such as that,
0:52:16 > 0:52:20they're not going to cure her overnight. It's going to be years.
0:52:24 > 0:52:26- You feel better now you're on home ground?- Oh, yeah.
0:52:29 > 0:52:33Mia has made amazing progress.
0:52:33 > 0:52:36She's still being fed by tube, but once she learns to take
0:52:36 > 0:52:39a bottle, Mum and Dad will finally be able to take her home.
0:52:40 > 0:52:42Is that better now?
0:52:42 > 0:52:43Are you starving?
0:52:47 > 0:52:50I'm still in shock, really, that it's happened so quick.
0:52:50 > 0:52:51I'm so happy.
0:52:53 > 0:52:58You're just, you know, trying to get a normal life back,
0:52:58 > 0:53:01that's all, so I am so happy.
0:53:10 > 0:53:13We've got three acutes on the go at the moment.
0:53:13 > 0:53:16We're just chatting to our coordinator about it.
0:53:16 > 0:53:19Just wait a minute. I'll see what we can do.
0:53:19 > 0:53:24Two teams arrived at Doncaster at the same time, so it will be quite manic.
0:53:24 > 0:53:28Every year, Embrace makes over 2,000 journeys moving sick babies
0:53:28 > 0:53:31and children from local hospitals to get specialist
0:53:31 > 0:53:33treatment in bigger centres.
0:53:35 > 0:53:39Some of these tiny patients are transferred more than once.
0:53:40 > 0:53:44Today a specialist team has been called out to collect baby
0:53:44 > 0:53:47Jake again - he's had a serious setback.
0:53:50 > 0:53:52He's having breathing difficulties,
0:53:52 > 0:53:55despite recently having an operation to unblock his nose.
0:53:55 > 0:53:57HE GASPS
0:53:59 > 0:54:02It seems like it's probably closing off,
0:54:02 > 0:54:05so we are taking the baby from Barnsley Hospital to
0:54:05 > 0:54:09Sheffield Hospital, where the surgery was done, for the ENT team
0:54:09 > 0:54:13to have a look again and whether they need to place back the stents,
0:54:13 > 0:54:15which we have taken out.
0:54:17 > 0:54:19He hasn't been too bad, has he?
0:54:19 > 0:54:22He's been fine until last night.
0:54:22 > 0:54:24It's just been a bit gradual.
0:54:24 > 0:54:29When we've been feeding him it's been getting a bit more sputtering because
0:54:29 > 0:54:35he's been struggling with trying to breath while taking his bottle.
0:54:35 > 0:54:38We've just given him a feed when we got in about tea time
0:54:38 > 0:54:40and he spat most of that out,
0:54:40 > 0:54:42so he's trying to breath through his mouth
0:54:42 > 0:54:45and drink his milk at the same time.
0:54:46 > 0:54:49But we know he's still breathing through his nose,
0:54:49 > 0:54:53but he's struggling a bit cos it's got smaller.
0:54:53 > 0:54:58Has he been having that noise since the tube came out?
0:54:58 > 0:55:01- No. - No? Nothing.
0:55:01 > 0:55:05He was breathing completely fine, so the noises only started last night.
0:55:05 > 0:55:10- The first few days, he were fine. - Gradually it's...- Yeah.
0:55:10 > 0:55:13'It's a big thing, I think, as parents,
0:55:13 > 0:55:15'to take a baby on that's got that kind of condition
0:55:15 > 0:55:18'that's kind of life-threatening if it's not dealt with.'
0:55:18 > 0:55:22- We probably did panic, didn't we? - Yeah.
0:55:22 > 0:55:25Seeing his baby brother rushed back into hospital has also been
0:55:25 > 0:55:27alarming for ten-year-old Josh.
0:55:27 > 0:55:30My mum and dad are away again, aren't they, Josh?
0:55:30 > 0:55:32You just get passed from everybody.
0:55:33 > 0:55:34Right then.
0:55:34 > 0:55:36'The main thing to worry is
0:55:36 > 0:55:40'whether he blocks off his nose again completely.'
0:55:40 > 0:55:46And that will be more difficult to manage in terms of him
0:55:46 > 0:55:48we might have to try more manoeuvres,
0:55:48 > 0:55:50probably open his mouth,
0:55:50 > 0:55:54keep a tube in his mouth just to keep his mouth open
0:55:54 > 0:55:57so that he can breathe more easily.
0:55:59 > 0:56:04This is the second time in his short life that Jake has made the 50-mile
0:56:04 > 0:56:08trip from Barnsley to Sheffield in the back of an Embrace ambulance.
0:56:10 > 0:56:12Last time he made this journey, the team had to pull
0:56:12 > 0:56:17over on the hard shoulder of the M1 to give Jake extra oxygen.
0:56:18 > 0:56:19BABY CRIES
0:56:19 > 0:56:22I'm not glad that I've had to bring him in,
0:56:22 > 0:56:25but I just want him sorted out and get him better now.
0:56:25 > 0:56:27So...that's all we wanted all along.
0:56:30 > 0:56:33We never expected at all for it to close back up as quickly as it
0:56:33 > 0:56:36did do, did we? Never, ever, not within a matter of days.
0:56:36 > 0:56:40I were thinking, "Maybe when he's about one-year-old, it might
0:56:40 > 0:56:44"start or he might need a little bit more surgery, but not within days."
0:56:45 > 0:56:48Doctors are Sheffield Children's Hospital decide Jake needs
0:56:48 > 0:56:52a minor operation to stretch his nostrils,
0:56:52 > 0:56:55but within days he's back again.
0:56:55 > 0:56:58All in all, he has to have four minor operations
0:56:58 > 0:57:02and two major surgeries before his nose is fully cleared.
0:57:09 > 0:57:12It's rewarding to hear that the patients that we
0:57:12 > 0:57:13transfer are doing well.
0:57:13 > 0:57:16We're very happy with the outcome and it's very rewarding.
0:57:17 > 0:57:21It's three months since Embrace first moved Jake from
0:57:21 > 0:57:24Barnsley Hospital to get specialist treatment for choanal atresia,
0:57:24 > 0:57:27a potentially life-threatening condition where the
0:57:27 > 0:57:32back of the nose is blocked by bone and tissue.
0:57:32 > 0:57:34He's gone two weeks now and we haven't had to go back with him.
0:57:34 > 0:57:36I don't think they'll do anything with him
0:57:36 > 0:57:39unless he shows signs of deteriorating.
0:57:39 > 0:57:42I know one of the last times they did some drilling on a little
0:57:42 > 0:57:44bit of bone that's got.
0:57:44 > 0:57:48They did say that he'd probably need it doing again when he gets older.
0:57:48 > 0:57:52You can't believe the journey that he's come through in 11 weeks,
0:57:52 > 0:57:56and how much he's just thrived as a baby.
0:57:56 > 0:58:00Nothing's stopped him developing in any other way at all.
0:58:00 > 0:58:03- And he's just brilliant, isn't he? - Yeah.
0:58:03 > 0:58:07He wakes up in the morning and he's laughing and talking to us,
0:58:07 > 0:58:12and smiling and kicking your arms and your legs in your cot, aren't you?
0:58:12 > 0:58:14Eh? Going crazy.
0:58:14 > 0:58:17So...
0:58:17 > 0:58:19BABY COOS