Mind That Child

Chapter 1

Ward round, Thursday evening

Today’s ward round is an eventful one, but it’s nothing out of the ordinary.

The baby is lying on her back. There are oxygen prongs up her nose and a drip connected to her bellybutton, but she seems calm and relaxed – not at all concerned as the ultrasonographer repeatedly passes the wand over her tummy while peering at the

screen that’s playing a grainy black and white movie of the child’s insides. As the image is refocused and reframed, zoomed in and out, we can all see the intricate plumbing of the gut, and the heart chambers pumping like little fists clenching and unclenching.

The girl’s father, a burly fellow in sweatpants and jandals, is watching from the other side of the table with the stunned expression I’ve seen before on parents on their first day in this ward – a combination of concern, confusion and exhaustion. To him, no doubt, his daughter looks tiny and vulnerable, but to the medical team she looks enormous because, unlike the majority of babies who end up in the level 3 Newborn Intensive Care Unit (NICU), she was born after a full-term pregnancy.

She needs NICU’s specialised skills and multimillion-dollar equipment not because she’s a preterm but because she has trisomy 21 – Down syndrome. As well as the mild to moderate intellectual disability and distinctive facial features caused by her extra chromosome, this means she faces a range of potential health problems, some life-threatening, and she may need a swift surgery.

The picture emerging on the ultrasound monitor is partly good: a congenital heart defect often seen in babies with Down syndrome is not present. But there are signs of pulmonary hypertension, where high blood pressure in the lungs hinders the transfer of oxygen to the blood, turning the baby blue. Of even greater concern are blood results which suggest she is at risk of developing leukaemia in later childhood. The hospital haematologists are taking a close interest and making suggestions for future management.

Paediatric trainee Logan Wingate is the registrar responsible for the baby’s care today, and as the ultrasound investigation continues he talks me through her statistics – blood pressure, oxygen saturation, heart rate, breathing patterns, electrolytes, blood sugars, body temperature, bowel motions, general appearance, milk-feed volumes – referring only occasionally to the columns of tiny figures in the baby’s sheaf of notes.

His plan for the rest of the evening sounds about right to me: fluid restriction for hyponatraemia (low blood sodium); monitor the platelets for clotting; keep a close eye on blood pressure. But his suggestion to increase the volume of milk delivered to her stomach via a gastric tube sounds a bit ambitious – when your stomach’s the size of a walnut, an extra few drops can cause discomfort and interfere with breathing. I suggest he instead aims for five millilitres. It’s not exactly an order: whenever possible my role as consultant neonatal paediatrician isn’t to boss the registrars around but rather guide them towards figuring things out themselves, but he nods and scribbles a quick note.

I ask the father if he’s keeping on top of the growing mountain of information about his daughter’s condition, and he smiles and nods but says he’d rather not have a full update until the mother returns. She’s the one who’ll want to hear all the technical details.

It’s 4pm on a Thursday at Auckland City Hospital, and we’re at the start of the evening ward round and handover. I will be the on-call consultant for the night, so I need to be brought up to date on the status of the 14 babies in the level 3 NICU.

These are the sickest babies – the ones who are extremely premature, or need assisted ventilation, or are fighting serious infections, or are recovering from abdominal surgery, or are awaiting heart surgery.

Over the course of 45 minutes Logan and two other NICU registrars, as well as a nurse specialist, lead me through the quiet, dimly lit wards. We try to match the lighting of the ward to the outside world, so the unit’s lights are turned down even lower in the evening, with spotlights on the staff workstations. We keep our voices low too, though some fascinating recent research by Terri Inder, a Kiwi professor now in Boston, suggests that a bit of noise stimulation is good for the premature brain – and of course we also encourage parents to sing and talk to their babies.

There are only two babies per room, but they’re swamped by a sprawling complex of equipment. Each lies in the centre of a $30,000 temperature-controlled incubator, tethered by a spaghetti of tubes and wires to monitors and an oxygen supply, and the bags of fluid, food and medicine that keep them alive. Their daily diet might include caffeine to regulate breathing, heparin to thin the blood, ibuprofen to repair a common circulatory malfunction, antibiotics to fight infection, morphine for post-operative pain, diuretics, glucose, proteins, probiotics, fat preparations and more.

At the head of each incubator there are knobs and dials and flashing lights, and a large computer screen that busily displays the accumulating data. Occasionally one of the machines emits a gentle chime to warn of a worrying oxygen saturation or heart rhythm or ventilator pressure. For the uninitiated it’s rather like stumbling into the cockpit of a passenger jet during takeoff. For me, it’s something like home.

Our little posse shuffles over to the ward’s second baby. Again, Logan runs us through the numbers and outlines his plans. This baby has been fighting a serious infection as well as pulmonary hypertension. Scans conducted before birth suggested he might have problems with his brain, heart and gut, so we’ve had him in here for two weeks, getting him ready for surgery and investigating all his systems.

The good news is that his brain and heart are normal, and he should be OK for bowel surgery tomorrow. His numbers are good, but he also looks good.

For all our dependence on technology, there’s still a lot of information you can collect about a child simply by watching for a few minutes. Medical data is encoded in the pinkness of skin, in the relative ease of breathing, in a facial expression. Preterm infants also manage to convey something of their personality even in those very early days. Their body – and especially their brain – is still under construction, but you can see the frame taking shape.

Some will motor around the incubator, putting their legs out of the portholes, and never remain still or in the same position. Others are quiet and don’t explore their world much. Some resist nappy changes, much as a healthy full-term baby might. Others lie back, stretch and yawn and look bored with the world.

This child was born a month early so he’s pretty small, but he’s far from the smallest in the ward today. Later in the round we’ll see a baby who was born days earlier at 23 weeks’ gestation, weighing 550 grams. She’s so small that if I placed her on my open hand with her feet on my wrist, you’d still see the tips of my fingers extending beyond her head.

Not that I’d dare do that: 23 weeks is on the absolute margin of survivability, and such a baby is extraordinarily fragile. Even changing a nappy can cause wide swings in cerebral blood pressure and trigger a brain haemorrhage, so we try to handle these tiny babies as gently and as infrequently as possible early on.

This particular 23-weeker is doing remarkably well all things considered, but I take care to tell the mother that it’s best to think of this as a ‘honeymoon period’: all too often it is followed by worsening news as the extreme immaturity starts to declare itself and the complications begin.

It is difficult, but necessary, to keep parents’ expectations realistic, because in a level 3 NICU baby things change fast. Half a century of rapid medical progress has turned a neonatal ward into a place of miracles, but it is still, and always will be, a place of death as well.

Take this evening.

As we’re doing our ward round, the day-shift paediatric consultant who would normally join us is sitting with a family as intensive-care support for a newborn baby is withdrawn. Within a couple of hours the baby will be dead. This was another 23-weeker, born weighing less than 600 grams. Sometimes, when we know a baby is coming early, there’s time to give the mother steroids and other drugs to fast-forward some foetal maturation processes, but this one came too fast. Since birth the baby has been struggling with immature lungs, heart enlargement and then infection, and was then found to have had a major cerebral haemorrhage with considerable brain destruction.

If the only thing that mattered here was lifespan we could stretch that out a little: we have machines to breathe for him, tubes to feed him, drugs to maintain some other bodily functions. But even if we pulled all the stops out, extreme disability is unavoidable, and death is all but certain, probably within days.

So now, after discussions between parents and medical staff, he has been taken off the path of ever more drastic interventions. He’s been disconnected from the ventilator that was pushing moist air into failing lungs. The only medicine he’s getting is a tiny dose of morphine to ensure there’s no discomfort. Best of all, his family is with him, making the most of his final hours when they can see him for perhaps the first time without all those wires and needles and tubes and beeping monitors in the way.

As we pass the door, my colleague steps out to let us know about the family’s decision and the baby’s condition. The mood as we discuss the case is sombre, but businesslike. There is a shared understanding that this decision is in the best interests of the child.

I ask my colleague if she has talked yet to the family about whether they will allow an autopsy. It’s an opportunity to remind the young registrars that in around a third of cases, an autopsy adds new, valuable information about the causes of death. It can be very difficult to discuss an autopsy with parents and whanau when they are already in pain and distress, but we have to do it. Aside from the medical benefit, it’s not uncommon, when parents return to see us later, for them to say they wish they’d had the courage to agree to the autopsy, so they could be clearer about why their baby died.

Moments like this are a reminder that there will always be a limit to what can be achieved in our wards.

In recent years the boundary between likely survival and likely death has been hovering around the 23- or 24-week mark. When I was a trainee intern in the early 1970s it was heartbreakingly higher. I remember vividly, at Rotorua Hospital, watching a beautiful baby boy born with immature lungs at 32 weeks’ gestation struggle for breath for three days until he became exhausted and eventually died. The medical and nursing staff were able to give him fluids and oxygen, but otherwise we stood by helplessly. Just a few years later, we would know how to supply gas to his nose under pressure and save his life, and today a child of his gestational age and with the same degree of lung disease has virtually a 100 per cent chance of survival with minimal or no disability.

It has been gratifying, in my lifetime, to witness the transformation of this field of medicine, thanks to a series of research breakthroughs. The most notable was the discovery

in the 1970s by New Zealand researchers that if you gave corticosteroids to a mother 12 hours before birth, you could accelerate foetal lung maturation. Later came breakthroughs

in ventilation, the invention of artificial lung surfactant, blood transfusions, and refinements to reduce side effects that plagued early cohorts of premature survivors, such as eye damage from too much oxygen (this is what caused Stevie Wonder’s blindness) and lung damage from tube ventilation.

Around the world, a handful of babies born before 23 weeks have survived without serious disability, and as-yet undreamed-of technologies may nudge the number even higher. But the paradox of modern neonatology is that each time a new method is found

for keeping younger babies alive, a practitioner like me has to think more deeply about the benefits of choosing not to do so.

If you work in an NICU ward, this isn’t some abstract philosophical question. As we keep pushing the limits, we mustn’t forget that there is also a limit to what you can put a baby through.

By the time we finish the round, we’ve seen a baby who’s had a stretch of gangrenous intestine surgically removed and may need to lose more, which risks leaving her with insufficient gut to survive without the misery of a lifetime of intravenous nutrition.

We’ve seen two babies with major congenital heart defects who have been referred to Auckland from out of town and are being readied for surgery.

Later, a1 baby who had seemed perfectly stable suddenly develops a distended tummy and becomes extremely sick. The mother is devastated and we have an awkward conversation: she had thought everything was going well, but by the end of the conversation she’s in tears. The baby is likely to survive, but it will be a long road to recovery after this setback.

Today’s ward round is an eventful one, but it’s nothing out of the ordinary. Reading back through my account I can’t help noticing how many times I’ve had to use the words ‘died’ or ‘death’. I imagine that from the outside this evening’s work could appear depressing or overwhelming – but curiously, that’s not the case at all.

Working in the shadow of death and disability is certainly a heavy responsibility, and at times things can seem dark. Parts of this job are sad, of course, and it would be a rare neonatologist who hasn’t cried at work more than once (and if they haven’t, that’s probably a problem).

But the joys of this work are also huge. It’s hard to beat the feeling when parents bring a baby in months after discharge, and instead of a vulnerable little creature you’re looking at a healthy baby and happy parents. I’m delighted every time someone stops me in the street and says ‘You looked after my baby’ – though when I ask ‘How old is the baby now?’ it’s alarming how frequently the answer is ‘Oh, he just turned 18’ – or 25, or even older.

Five years ago I was honoured to be invited to the 21^st birthday party of a young man whom I first met when he was a 23-week pretermer – the youngest baby we’d ever managed to save at that time. Later I heard that he had saved a young boy from drowning in a local swimming hole that summer. For me there was a satisfying symmetry in that story of life versus death.

By the end of this round I feel I have enough information to help me make decisions during the night; and, rather than feeling despondent, this fundamental routine of hospital life has left me feeling energised. It strikes me that half a century after I first decided I might like to study medicine, I’m still getting a kick out of it.

I’m 69 and in pretty good health, especially since I got a couple of replacement hips installed (and I think it did me some good to experience the medical system from the other end of the stethoscope). My duties at Auckland City Hospital, where I’m one of a team of eight specialists working alongside 16 registrars and nurse specialists, takes only 40 hours a week, which feels something like semi-retirement considering that until 18 months ago I was doing an additional 15 hours a week in my private paediatric practice.

I’m in no hurry to give up the neonatal work, though. There is always a challenging case or something I have never seen before. There is always a baby for whom you can feel happy at what they have achieved, or sad when things go wrong. There are always parents to help through an incredible journey, and a junior staff member who is keen to learn and to whom you can pass on some of your wisdom. I am, I know, a very lucky man.