The miracle of neonatal medicine

Twenty years ago, 20% of babies who weighed less than 1kg at birth survived. Today, that number is 80%. So what’s changed to give our smallest, weakest babies their best-ever chance of living full lives – and their parents a reason to hope for their futures?

 For most of us, it’s impossible to imagine that a baby weighing less than a bag of sugar can survive and go on to live a normal, healthy life. For the doctors and nurses in neonatal medicine, it’s all in a day’s work. So how do they make these tiny miracles happen?

Imagine this scenario: you’re 28 weeks pregnant and suddenly you’re sure you’re going into labour. It’s every pregnant woman’s worst nightmare – the thought you don’t dare to think. Yet one in eight babies are born prematurely or sick; one in ten babies (or 70,000) need special care; and 2.5% (or 18,000) need some kind of intensive care. The plus side – the side to remember – is that the care those babies are getting has never been so good.

Before the birth

If you were to go into spontaneous premature labour, the first thing you could expect is to be given drugs to slow down your contractions. These drugs might only hold things up for a day or so, but that’s enough time to get you to a specialist neonatal unit and to give your unborn baby steroids to mature his lungs. According to Tommy’s, the baby charity, sometimes delaying labour by just 24 to 28 hours can make a huge difference to a baby’s chances of survival.

Giving steroids is one of the most significant changes in the way premature babies are treated over the last 10-15 years, explains Dr Jane Hawdon, consultant neonatologist at University College London Hospital. 

Steroids, or corticosteroids, are given in two doses twelve hours apart, and the second dose needs to be administered at least twelve hours before the birth – which is the reason why being able to delay the onset of labour is important. Steroids reduce the risk of respiratory distress syndrome – a serious condition that occurs in premature babies because their lungs are too stiff to work properly. Dr Hawdon says: “In the past, obstetric doctors were reluctant to administer drugs to mothers which they didn’t need, but research shows steroids have saved the lives of premature babies, and there are no downsides attached to giving them.”

Surfactant

Steroids work by speeding up babies’ production of something called surfactant. This is a chemical we all have which reduces the surface tension of our lungs – it makes breathing easier by stopping our air sacs from collapsing when we breathe out (washing liquid is a household surfactant). Babies at term have already started to product surfactant but premature babies don’t until some hours after birth – premature babies don’t have enough of it, so breathing is hard.

As well as helping premature babies to make their own surfactant, doctors also give them surfactant after birth directly into the lungs through a tube inserted through their mouth or nose to the windpipe. “Steroids and surfactant are the two single things that have made the biggest difference to survival rates of premature babies in the last 10-15 years,” says Dr Justin Daniels, consultant paediatrician and neonatologist at the North Middlesex hospital (a special care baby unit managed by Great Ormond Street Hospital).

Most babies – around 60% – have a good response to surfactant treatment and it seems to increase the number of healthy survivors, rather than increasing the number of babies who survive with disability.

Neonatal networks

The other reason why delaying labour can be so important is that it gives mothers time to get to the right unit with the right neonatal staff and equipment – and that may well not be their local hospital. “Neonatal care is constantly reviewed,” says Jane Hawdon. “We know that it works best when one hospital in a geographical area provides intensive care and the other hospitals in that area feed in their high risk babies.”

These neonatal networks are now in operation across the country, meaning that if your child is very sick, you may have to travel a short way to see him and arrange to stay there – but he will be getting the best care possible.

Ventilation

Good methods of ventilation are crucial to helping premature babies survive. “The ways available to ventilate babies have moved on significantly – ventilators now are more technically complicated and we have better techniques for giving ventilation,” says Dr Daniels. “The key thing is that we have lots more options depending on a baby’s precise needs.”

In particular, today’s systems for ventilating babies are much gentler than they used to be. Doctors have known for a long time that premature babies need help with oxygen – but in the past gave them too much, leading to problems with blindness. Dr Hawdon says, “Knowing we can back off on the amount of oxygen we give babies has made a huge difference.”

CPAP (Continuous Positive Airway Pressure) isn’t a ventilator but is a machine that helps babies to breathe on their own, by having air flow through two fine tubes placed in their nostrils. “CPAP is a lovely halfway house,” says Dr Hawdon. “It’s been around for a long time but it’s only in the last 10-15 years that delivery systems have been improved and confidence in CPAP has really advanced. It’s a low-tech solution but very innovatively applied – and that’s what happening in a lot of neonatal medicine.”

Temperature control

Studies have shown that if a baby is cold when they reach the neonatal unit, this is a risk factor in them getting sick or even dying. Again, it’s a brilliant low-tech innovation that is being used now which makes all the difference – a plastic bag!

“We have become better at maintaining babies’ temperatures straight after birth, and what we now use for that is a polythene bag – it looks just like a freezer bag,” says Justin Daniels. “We pop the baby’s body in it straight away and it’s brilliant at keeping them warm. Parents are always shocked when they see us do it! It’s amazing that something which costs pennies might make the difference between doing well and not well.”

Neonatal units will also have a choice of incubators. Some are closed boxes with hand-sized holes in the sides and mechanisms to circulate air inside. The closed box not only helps keep the heat in so babies don’t use up energy staying warm, but also controls the humidity around the baby, so they don’t lose too much moisture from their skin.

Alternatively an open cot incubator has an open top and an overhead heater. This allows nurses and doctors to get to the baby more easily but one disadvantage is that he is more exposed to the noise and light of the baby unit.

Feeding

A neonatal intensive care ward is packed full of amazing technology. There are ultrasound scanners to check babies’ brains for bleeding or other problems, vital signs monitors, and oxygen saturation monitors (a little device that’s strapped gently to the baby’s foot and shines light through their skin, to check the levels of oxygen in their blood).

One thing that is really helping premature babies is the way that doctors can now feed them, explains Dr Hawdon. Premature babies may be unable to take fluids through their mouths into their stomachs, as their digestive systems are too immature to cope. In this case they are fed a special mix of nutrients straight into their blood stream by placing a long, fine tube into a vein in their arm or leg. This is called total parenteral nutrition (TPN) and is adjusted as the baby develops.

As they start to do better, babies can take tiny amounts of food into their stomachs, down a tube through the nose or mouth. Mums are encouraged to express, so that babies can be fed the mother’s milk via the tube. “The benefits of breast feeding are well known,” says Jane Hawdon. “Just like term babies, breast milk-fed premature babies are betting at fighting infections. Plus breast-feeding helps with eczema and prevents overfeeding. There has been a big push recently to get premature babies breast-fed in the unit, send them home breast-fed and keep them breast-fed.”


Developmental care

Developmental care is a buzz word in neonatal nursing. Basically it’s the idea that the way babies are positioned makes a big difference to their outcomes – curled up in a foetal position, rather than lying on their backs with their legs splayed, can help with posture and spacial awareness as the baby grows.

Annie Hunt is lead nurse in a tertiary referral unit, dealing with the very smallest and sickest babies. “Keeping babies in a dark, quiet environment for a period – covering the incubator if possible – and not handling them more than necessary stops them using up their energy,” she explains. “We also do kangeroo care, where parents cuddle the babies skin to skin. We take the time to help parents to hold their babies, even if the babies are hooked up to incubators and wires, as it helps them both to bond.”

A large part of nursing premature babies is about reading all monitors they’re hooked up to, and understanding the alarms that go off all the time. But just as important is dealing with all the people involved – and neonatal nurses are expert at it. “Neonatal nursing is challenging because of the number of people involved – babies come with extended families,” says Annie.

“A good nurse interacts with the whole family, understands the dynamics, respects their privacy and gets them involved in caring for their baby. It’s very satisfying even though it can also be sad.”

Common sense treatments

While there are new treatments for a very few babies with specialist conditions – such as Extra Corporeal Membrane Oxygenation (ECMO), which is temporary life support – many of the reasons why premature babies are doing better today then ever are much more straightforward. Dr Hawdon says, “Understanding that babies are vulnerable to infection is common sense but it’s only relatively recently that rules like strict handwashing have been stringently enforced on neonatal wards.”

In the same way, Justin Daniels talks about putting babies to bed on their backs – something that’s automatic to most mums now. In the ITU they sleep on their fronts, as this helps their lungs to expand, but by the time they’re in the ‘cold nursery’ or the going home room, the babies should be used to sleeping on their backs. “Premature babies are at a significantly higher risk of SIDs than term babies. Since putting babies on their backs in the late 80s/90s, cot death has been cut by 75%,” he says.

The fact is that most of the time, pregnant women can’t do anything to prevent having a premature baby. But the care those babies get – be it skilled, caring nursing, low tech solutions like polythene bags, or technical wizardry – is amazing.

For confidential advice and support, call the BLISS Family Support helpline on FREEPHONE 0500 618140 or visit www.bliss.org.uk.

How premature is ‘premature’?

Premature baby – born before 37 weeks

Moderately premature – born between 35-37 weeks

Very premature – born between 29-34 weeks

Extremely premature – born before 29 weeks

Survival chances

Babies born at 23 weeks have a 17% chance of survival

Babies born at 24 weeks have a 39% chance of survival

Babies born at 25 weeks have a 50% chance of survival

_____________________________________________________________________________________
10 % (70,000) of babies need some level of special care at birth

2.5 % (18,000) of babies need some level of neonatal intensive care at birth. This figure is getting bigger
_____________________________________________________________________________________

Causes of premature birth

* Around 1/3 of premature births happen for no apparent reason

* Multiple pregnancies are likely to induced at 37 weeks if labour is not spontaneous

* A medical condition, like diabetes or rhesus negative blood group

* Cervical incompetence

* Premature rupture of membranes

* Neonatal emergency, eg bleeding, high blood pressure, a problem with the umbical cord or placenta

* Pre-eclampsia occurs in 1 in 14 pregnancies and causes a third of all premature births

* Faulty placenta

* Stressful events

* Other causes include age (if under 15 or over 35), smoking and being underweight

“We’re just so very lucky”

At 27 weeks pregnant, Nicola O’Connor’s doctor told her ‘this is as bad as it gets’. Days later she gave birth to a 560g baby boy, Lucas. She shares her diary with us

January

I’ve been having terrible indigestion-like pains, so today I went to see my GP. My pregnancy has been healthy so far – my bump is quite small and I’m at risk of pre-eclampsia, for which I’m being regularly monitored – but my doctor sent me to hospital for tests.

They found that my baby hasn’t grown since the 22-week scan, three weeks ago – it’s tiny. And I’ve beeb diagnosed with Antiphospholid Syndrome, or sticky blood, which means that my placenta isn’t supporting my baby.
The consultant told me, “This is as bad as it gets.”

But they won’t deliver the baby now – he needs to get to 28 weeks and 500g to have any kind of chance. So I’m going to have weekly scans and see how far I can get. It’s not just the baby who’s at risk – I could have a placental abruption or thrombosis. It’s a shock – everything seems uncertain and unreal.

19th January

The scan today showed the baby’s in trouble, but there’s an intensive care bed free at my hospital, St George’s in southwest London, which he can have. It’s our best chance. I’ve been told to go home, pack and be back here by 9pm, while they assemble an expert team. We always knew that if we had a boy, he’d be Lucas, but today we decided his middle name will be Richard, after his dad. It means ‘brave power’ and he’s going to need it.

20th January

There’s a 50/50 chance our baby will survive being born today. I’m 27 weeks and six days pregnant.
My C-section took place at10am, in a room full of people. Richard peeked over the curtain and said, “He looks like me!” The baby was taken out in his membranes, intubated and put in what looked like a Sainsbury’s freezer bag. People were working on him non-stop. After a while someone told us it was a boy and Richard punched the air. Our baby is alive.

Week one

I finally saw Lucas at 9pm the day he was born and he was holding his own, but he went downhill rapidly. That night, he had an abdominal haemorrhage and went into multi-organ failure. He turned black from the neck down, and is on life support. They thought he had a problem with his heart – it would have been a death sentence – but the specialist gave him the all-clear. Everyone is worried about a serious gut infection called NEC, which can affect premature babies. But no one is sure and Lucas is too sick to have surgery.

Everything is a blur. The equipment in the ITU is overwhelming. There are lots of lines going into Lucas and pads on his chest. He has to be kept moist and warm – we can barely see him through the steamed-up incubator. It’s so noisy in the ITU – monitor alarms go off all the time and the ventilators ‘whoosh’ constantly.
The breast-feeding trainer showed me how to express milk and I’m doing it every three hours – even through the night. It feels like the only thing I can do.

Week two

Lucas  has made a dramatic recovery – his tummy is turning a healthy pink and the doctors are weaning him off the life support. They took him off the ventilator for a bit to try CPAP (Continuous Positive Airway Pressure) – it’s a machine that helps him to breathe on his own. Opening the incubator is scary – I’m terrified Lucas will catch something. We talk, read and sing to him through the incubator portholes. For the first time, I’ve begun to hope for a future for Lucas.

Week 3

Lucas looked at me for the first time and something in his eyes told me he was going to be OK. He’s having regular head scans in case he has a brain bleed but he so far they’ve come back clear. Though he’s tiny – the size of a 23-week-old baby, or 560gs, at birth – his organs are more mature as they carried on developing until he was born.

Until now Lucas has been given all his nutrients through a tube into one of his veins. This week they moved him on to tiny amounts of my breast milk down a tube through his nose and into his stomach. He even got my colustrum.

Week 4

Richard has gone back to work and we’ve settled into a routine – I go to the ITU every morning; and Richard leaves work early and comes in for a few hours.
I finally got my first cuddle, 23 days after Lucas was born – it was incredible. But holding him dislodged the endotracheal tube and he had to be sedated and reintubated . It’s so hard not being able to cuddle him whenever I want – it’s a special treat, as he has to be stable and a nurse needs to be free to help us. He’s still so fragile.

Lucas is taking more of my milk – they’ve added proteins and vitamins to it and have taken out his long feeding line. He’s doing really well.  And I feel more useful – I’m learning how to change his nappy, turn him over and feed him milk down the tube.

Month 2

Just when Lucas seems OK, we hit another dip. His tummy was swollen and the doctors were worried it might be an infection, so they stopped his milk feeds and put the line back in – he cried and cried. That was the same day we registered Lucas’s birth and it felt as though we’d jinxed him.

At eight weeks old he was well enough to be breastfed for the first time – he could suck but then he got sick again. I was sitting next to him – he just stopped breathing and turned grey, and had to go back on the ventilator for a few days. Time and again, Lucas gets stronger – then something goes wrong and we take a huge step backwards. Every time we feel we might lose him. 

Once Lucas was on the mend again, we went to the unit late one night and they were doing the daily weigh-in, so we saw Lucas’s face without the tube and mask for the first time. He’s so beautiful. Now he’s having an hour a day off CPAP – we watch his face and listen to him squeak and breathe, which you can’t hear when the CPAP is on. He’s got his first role of fat and can fit his first clothes – Lucas is starting to look like a baby.

Month 3

The lowest point yet. After making it to six hours a day breathing alone and having breastfed many times, Lucas’s chronic lung disease has got worse and he’s back on CPAP 24 hours a day. We were so near leaving ITU, but now Lucas needs lines in him again and IV medication. We’re close to his due date but it seems like we’ll never take him home.

Month 4

Our team is so amazing! They tried Lucas on an asthma drug and, four days after his due date, Lucas came off CPAP – and then shocked everyone by spending an entire day ‘in air’. Things are getting better so quickly now and we’ve been moved to the ‘going home’ room. We gave him his first bath – he smelt like a little hamster – and I am beginning to feel like I’m the one in charge of my baby.

Lucas said goodbye to the unit on 20th May, four months exactly since he was born. We felt elated to be leaving, yet sad to say goodbye to the team who had saved our son’s life so many times. They’ve been such a great support to us.

Lucas’s first birthday

After Lucas came home from hospital, we had a wonderful six weeks of relative normality, then Lucas’s reflux affected his lungs. He had to go back to hospital and was put on constant oxygen. We were devastated. He came home after two weeks but this time it was on oxygen – we had to get used to lugging cylinders around everywhere and had an oxygen concentrator and monitors in the house .

By September he was breathing on his own again and since then, he’s never looked back. Yes, his growth has been slow, he had to have surgery to fix hernias in both his groins and he’s got every cold going, but he’s hitting his milestones.
His first birthday today is a happy day, but the worry of those early months has suddenly caught up with me. The first year has been so intense, with constant appointments and check-ups, there’s been no time to think. I felt very low for a while.

Today

Lucas is three and you’d never know what he’s been through. He’s so happy and chatty and lives life to the full! This year he’s had more surgery to correct his undescended testes, which went well.

It took him a long time to walk and he still can’t jump, but a neonatal consultant checks up on him once a year and will do until he’s five. The hand of fate dealt us a bad card but we’ve been so lucky to get through with our brave, amazing little boy.

It could so easily have gone the other way.