New Zealand’s rising number of premature babies cost millions in care for uncertain outcomes. Listener writer Sarah Barnett reports on the dramatic early arrival of her daughter and the good hands they found themselves in.
Maggie was born on January 12 this year, by c-section, at 8.58am. Arriving nine weeks early, she weighed 1.67kg (3lbs 11oz) – less than the weight estimate based on her last ultrasound, and considered low even by the standards of babies born two months too soon.
Her hair, which we’d last seen on that ultrasound waving ghostlike, turned out to be black, plastered to her head, and her tiny lungs were getting their first workout as she shrieked into the crowded operating theatre.
She was checked over, bundled up, brought to me for a kiss – long enough to see blue eyes and a pointy chin below a furious frown – then whisked off to the Newborn Intensive Care Unit (Nicu).
Maggie was one of the 5000-ish premature babies born in the country in 2011. Premature is considered before 37 weeks’ gestation – “normal” gestation is 40 – and although not every premature baby will need intensive care, the number of early births has been steadily rising.
In 1999, 3791 babies were born between 24 and 36 weeks; by 2010, that number had risen to 4342 – a rise of 14% in just over a decade to 6.7% of all live births.
They’re a high-maintenance bunch. Figures given to the Listener by the Ministry of Health show Nicu care is one of the most expensive budget lines in public health: comparable to cardiothoracic surgery and neurosurgery, which soak up pricey operating theatre time and expertise.
The most complex cases, according to the ministry, clock in at $1160 a day; for an average 44-day stay, that’s $51,000. And that doesn’t include operations. Auckland District Health Board says once operations are included, its average per-day range comes in at $3000-$6000, bringing that 44-day stay to a top end of more than $250,000.
A baby born at just 24 weeks, who will need the most intervention and the longest stay, could account for twice that – half a million dollars.
The World Health Organisation has raised concerns about rocketing numbers of preterm infants born worldwide, with rates increasing particularly in developing countries. But New Zealand boasts some of the best statistics internationally and the WHO recognises New Zealand and Australia as having the world’s lowest rates of premature births, at 6-7% of all births. International audits show our infant mortality rates are also among the lowest.
But the pressure on the neonatal units is immense, with an unpredictable and increasing patient load. And the question must be asked: just how much effort should be made to save very premature babies, when many suffer ongoing health problems?
New Zealand has long been at the forefront of care of premature infants. Even early last century, medical professionals here were bucking the idea that babies born before seven months were not viable, although care was rudimentary.
In 1909, the Journal of the Nurses of New Zealand reported on the case of a baby boy born at about six-and-a-half months’ gestation, swabbed with a mixture of olive oil and whisky and fed with a milk-sugar solution, although “whenever vitality appeared to be low, a drop of whisky diluted with water was administered through a pipette”.
One of the greatest leaps, worldwide, was made by Graham Liggins, who was working as an obstetrician at the old National Women’s hospital in Auckland in 1972 when he found that antenatal steroids given to women set to deliver early strengthened their babies’ lungs. The steroid jabs are now standard operating procedure worldwide; miraculous – and miraculously cheap.
Studies that have followed up with infants who’ve received them, including Liggins’s original cohort, now in their forties, show “there’s no downside”, says Dr Malcolm Battin, the clinical director of the Auckland Nicu.
As someone who had nine shots over two months, I would have to protest there’s one small downside: the solution is oily and viscous, given intramuscularly, and deeply unpleasant. But, of course, a tiny price to pay.
I next saw Maggie several hours after delivery, when I was wheeled through the Nicu on the way back to the maternity ward. She was installed in her incubator, covered from head to foot with the equipment that would soon just become part of the wallpaper. She was on cpap (continuous positive airway pressure), a hefty tube with prongs up her nose to help deliver air more freely into her lungs.
The cpap tubes were pinned to a knit cap pulled low on her brow, and held to her cheeks with velcro patches. An oral-gastric tube dangled from one corner of her mouth, ready to take any colostrum I could produce, and eventually, full breast-milk feeds.
Patches on her chest led to a heart and respiration rate monitor, which would sound an alarm if either rate went above or below certain parameters. An IV was inserted into the back of one of her hands, delivering fluids and prophylactic antibiotics against any possible infection.
It was held in place with a splint, and would be moved between her hands and feet regularly to avoid infection and tissue damage. The red light of her oxygen saturation monitor glowed all the way through her foot.
We were lucky, so lucky. Within four days, she was breathing without help from cpap, which meant she lost the first of the tubes and wires on her way to becoming a cordless baby. It wasn’t long before doctors making their morning rounds were calling her the nicest thing you could say to parents of a hospitalised baby: “boring”. Having made it to just over 31 weeks’ gestation, she was spared the interventions available to the very smallest and sickest babies.
Although infant mortality has slowly improved, the quality of life is still of concern. The earlier a child is born, the more help it needs: a 24-weeker will certainly be ventilated, may need surgery to correct heart or gut problems, and will be more prone to brain bleeds and, long term, intellectual and physical developmental delays.
About one in 10 of all premature babies have ongoing problems such as learning difficulties, problems with eyesight, asthma or cerebral palsy of varying degrees of seriousness. The EPICure study of babies born before 26 weeks in the United Kingdom and Ireland found that just 20% had no difficulties and 22% had severe complications such as profound deafness or cerebral palsy that prevented walking. The rest had mild to moderate conditions.
When it comes to very young babies, Battin says, it’s a matter of striking a balance between the care that’s available and the quality of life of the baby. Which is why the age of viability is unlikely to go below 24 weeks – at least, not for a long time. “I think at 23 weeks the odds are very much stacked against you. We certainly have some babies who’ve been through the unit at that stage, but each case has to be talked about and thought about on its individual merits …
“Certainly I think it would be unlikely we’d be moving below that threshold for a long time and some of that’s equipment. When you get down to the smaller and smaller babies, the size of the ET [endotracheal] tube that goes down the throat gets pretty small, then you have to find a suction catheter that goes down the inside bore of the ET tube. You have to find a catheter that feeds into a blood vessel. So there are some limits with the technical, some limits with the clinical and then there is just what’s appropriate.”
Yet although so much has improved in the treatment of preemies, there’s still little known about why preterm labour happens – in as much as 50% of all cases, it will remain unexplained. The rise New Zealand has experienced can be explained in part by an overall increase in the number of babies born: between 2006 and 2010, the New Zealand birthrate increased 15-16%.
In addition, Battin says, multiple births are increasing because of a “drift up in maternal age”, which naturally makes women more prone to having twins, and a 2004 review of Nicu service by the Ministry of Health found that an increased use of IVF was having a “significant” impact, again, because of its propensity to produce multiples.
Battin says that otherwise, the reasons for prematurity are not so clear. Many of the associations found with preterm labour are just that – associations, and not necessarily causal. One of the clearest, he says, is smoking: women who smoke during pregnancy have been found to have a clearly increased risk of early, low-birthweight babies.
The landmark Screening for Pregnancy Endpoints (SCOPE) study, performed by the University of Auckland’s School of Public health from 2004-2007, found that women who gave up smoking in the first 15 weeks of pregnancy quickly returned their risk of preterm labour to that of other healthy pregnant women.
Otherwise, Battin says, early birth can be the result of the mother’s health (as it was in our case), as hypertension or pre-eclampsia makes the pregnancy dangerous to continue for mother and child. Likewise, previous operations on the uterus or cervix could lead to preterm labour.
Which means for most families, their introduction to a Nicu will happen with no warning: thinking you have plenty of time on the clock to stock up on nappies and sort out your maternity leave, you suddenly find yourself in the strange world of the neonatal ward.
The Nicu (pronounced, for some reason, “nick-oo” in the UK and New Zealand, and “nick-you” in the US) is invariably one of the least visible wards in a hospital. Even if you happen to know someone with a premature baby, visiting rules are so strict few people who aren’t relatives would ever have reason to go in. New Zealand has six level-three Nicus, which provide care for the smallest and sickest babies, in addition to level-two and one services, which babies slowly graduate through as they get closer to going home.
Auckland Hospital’s Nicu is tucked away by the maternity ward, its sign simply saying “Newborn services”. The only other giveaway comes if you happen to be crossing the ninth-floor overbridge at night and spot UV light stands glowing blue across the way, helping jaundiced babies come right.
Yet amid the technology, there are touches that show this is no ordinary hospital equipment, and that care in the Nicu is driven as much by trying to create a comfortable family environment as it is by the clinical side of things.
Maggie’s flannel sheets were decorated with yellow teddy bears. The patches on her chest had a heart motif and the blood pressure cuff was decorated with tiny ducks. The quilt that covered her incubator to keep out the lights of the ward and allow her to sleep was homemade, and a recliner sat next to it for comfort when expressing milk, having cuddles or just staring at this tiny creature, who’d arrived out of thin air. It was a world away from my spot in the maternity ward just a few metres down the hall, with its hospital-issue sheets and straight-backed chairs.
That emphasis on homeyness is one of the biggest changes Battin says he has seen in his career. “Back in the 70s, all neonatal units were like a barn, really. A big room, with all the babies lined up along the side.”
Intensive care was a young specialty, he says, and the emphasis was on learning what the technology could do. Babies were only just beginning to be ventilated, long after adult patients first were. Even then they were crude machines compared with what’s available now.
“They’re designed now to be in synchronicity with the babies. The baby can initiate a breath and the ventilator can finish the breath for the baby and it requires sophisticated technology to do that, but it’s a much more natural process for the baby and it means there’s no pushing against a machine so it’s not causing stress on the baby’s lungs.”
Nurses are still in uniform, but doctors’ whites are a thing of the past, as they try to make the place seem less sterile – although it is meticulously sterile: hand sanitiser is never more than arm’s length away, even in the corridors.
It is what makes neonatal care unique: on one hand it’s stupendously technologically advanced and on the other it’s reliant on very simple things such as kangaroo care, where babies get skin-to-skin time with their parents.
Much of my reading in preparation for the arrival of a preemie, especially literature from overseas, suggested parents may find themselves having to campaign hard to get kangaroo care and round-the-clock access to their children, as different hospitals would have different standards.
It was a relief, therefore, to discover it’s a given in New Zealand hospitals, and Battin says he’s glad that was our experience, “because it is the ideal. Kangaroo care has been used for a number of years, but they’ve done studies looking at babies’ heart rates and all of those physiological markers improve.
“There’s less stress when they’re in a kangaroo cuddle than in a supine cot position. When we moved to this unit from the old National Women’s, one of the things that was very strongly on the agenda was space by the bedsides for a recliner to be able to do that for the families as much as possible.
“And the other thing is, parents aren’t visitors: parents are a part of the care, they’re what babies need. Family time with parents is integral to the care package. We do try to focus on family care, or the other term people use is developmental care.”
There is, therefore, far greater support available to families of preemies than parents of healthy newborns. Home-care nurses visit as frequently as needed until they feel ready to pass the baby into Plunket’s care. Battin continues to see Nicu graduates as outpatients until they’re about 18 months old, to check how their physical development has come along.
“Babies are going home to families – they’re not being discharged to a house; it’s a family and a home and that environment is important for them. Some of these babies, when they go home, could be tube feeding, they could be on oxygen on top of all the normal requirements for babies. And I guess with twins, you double that requirement.”
Once babies are out of immediate medical danger, the emphasis quickly turns to the parents and the end goal of getting home. Parents are allowed in the ward around the clock, although any other visitors have a window of a few hours, and must come one at a time, always accompanied by one, and only one, parent.
This is partly to reduce the risk of infection being brought into the ward – children under the age of 12 aren’t allowed at all, unless they’re siblings – and partly to maintain privacy. Everyone is told that peering into other incubators and cots is strictly forbidden; everyone is kicked out during ward rounds so you can’t overhear doctors talking about any baby other than your own.
Within a day, we were performing Maggie’s “cares” – the three-hourly nappy change-temperature check-feed routine, which is done through portals in the side of the incubator, like the old Krypton Factor puzzles, but far more scary.
Nurses gently encourage parents not to become too hung up on what the monitors say, although it’s impossible not to be: in a room with four incubators, the moment an alarm sounds all parents’ heads will snap up to see which baby’s heart is racing, whose breathing has slowed down. It’s hard to remember that they’re still normal babies: the first time Maggie really started to cry while I was holding her, I went into a panic, assuming she must be in pain from her cpap or IV. The nurse came over, sniffed, and said she had a dirty nappy.
But the number you watch like a hawk is baby’s weight. As each precious gram accumulates, they come closer to losing another bit of kit and graduating from an incubator into a cot; maybe even becoming stable enough for a proper bath, rather than a top-and-tail in the incubator.
All these gains can so easily be reversed, however, which is what makes the Nicu the “rollercoaster” everyone calls it. We had a fairly easy ride until the last week or so, when Maggie’s weight gain suddenly stalled and she started having trouble maintaining her temperature. It pushed her discharge back by over a week.
It’s “always a great day” when babies go home, Battin says – and scary, too, although at least that’s totally normal for any parent taking their new baby home. Finally in the lift with Maggie strapped into her capsule, we were like all those other parents we’d seen leaving the delivery suite with their newbies. A lady in the lift took a peek and asked, “Brand new?” We just said yes.
Not a moment too soon
Facing a traumatic end to her pregnancy, Sarah Barnett is warned off Dr Google.
It is exactly what you don’t want to hear during your first pregnancy ultrasound. The radiographer had already done all the usual baby checks, and at 13 weeks, everything looked just as it should. Perfect size, vigorous: I let out the breath I’d been holding. Until. The radiographer swished the wand around a bit more and said she was just going to check how everything else was looking – “Huh.” A pause. “Do you have more than one part to your uterus?”
So that’s how I found out I had more than one part to my uterus, something I didn’t even know up until then could happen. We were at Auckland’s Insight Radiology, perched on the edge of the Domain and a five-minute walk to the hospital, which is where she sent us immediately for further checks.
We went, clutching our little packet of photos from the morning’s scan, and over the course of the day spent waiting in the Women’s Assessment Unit, it quickly became apparent that this baby was stumping the experts. It took a week and an MRI to confirm the suspicion of our obstetrician, Dr Maha Haddad, that I had what’s called a rudimentary horn on my uterus.
The uterus is created out of two halves that normally join seamlessly to create the whole, but in as many as one in 1000 women, there’s some abnormality.
The most common is a bicornuate uterus, where the join is still partially visible, creating a heart shape. I had the most rare – a normal half, with a smaller “horn” attached. Even more rare, the pregnancy was in the horn.
Haddad’s first advice was to stay away from Dr Google, which was wise, as I read much later on Wikipedia that “pregnancy in a rudimentary horn cannot be saved and needs to be removed with the horn to prevent a potentially fatal rupture of the horn and uterus”.
Instead, Haddad consulted Professor Peter Stone, the head of obstetrics and gynecology at Auckland Hospital, and they sat us down – with me 14 weeks pregnant at this stage – to say we had two options: end the pregnancy or sit tight and continue to be monitored closely. Haddad handed us some of the few articles she’d found on this kind of pregnancy, all of which had ended in rupture and baby loss.
The bald statistics were not reassuring – this happened in just one in 140,000 pregnancies; in up to 90% of those there is a rupture by halfway through the pregnancy; there was only a 2% “fetal salvage rate”.
We had already beaten one lot of odds simply by having it picked up – even with the clarity of today’s ultrasounds, I learnt later, not every radiographer would have seen any abnormalities and we could have been sent on our way thinking everything was fine. Even knowing what they were dealing with, trying to glean anything from subsequent ultrasounds was tricky.
Really, Stone said to us after that first meeting, this is down to whether you think you can live with the uncertainty. After he left the room, Haddad laughed, and said parenting is uncertainty – it doesn’t stop once the baby’s born.
As it was, I made it to just shy of 23 weeks before a week of what had been diagnosed as indigestion was finally identified as a decent internal bleed and I was admitted to the maternity High Dependency Unit straight away. At that point, the outlook was grim: I was likely to need an operation to stop the bleeding, which would certainly mean losing the baby and almost certainly also mean a hysterectomy. I signed all the permission forms and waited with everything crossed that the blood transfusions would do the trick and stabilise me to get us across that magic 24-week mark, when the baby would be viable.
They did, and in the end, I was stable till just past 31 weeks, at which point Stone and Haddad figured we’d hit a sweet spot between giving the baby the best possible start and not pushing my body so far it would give out. When Haddad delivered Maggie, it was two months to the day since I’d been admitted to hospital. It was, she said afterwards, not a moment too soon.
The case is on its way to being published, to join the sparse literature on the topic. Haddad now says it was “unique and nothing short of a miracle”, as she was unable to find another case like it worldwide that resulted in a live birth. Of course, everyone thinks their baby is a unique miracle. The only difference with us is it’s medical fact – at almost a year old, Maggie is crawling, getting into all sorts of mischief and hitting all her milestones.