Littlest rays of sunshine

Karen Kissane

ONE nurse holds the baby’s head, the size of an orange, between two fingers. The other feeds a spaghetti-thin tube down her nose; down, suction, up. Now it goes into her mouth and down her throat. The baby mews piteously, like a kitten in distress, but the nurses do not flinch and their hands are steady. Then it is over and they murmur comfort and the tiny tormented creature reaches up and clutches their forefingers, one in each hand, as a pioneer woman might have gripped the bedposts in childbirth. You’ve got to be tough to survive here, whether you’re in the cot or beside it.The walls here are baby pink but the babies are foetus red. The zoo mobiles that hang from the ceiling, the teddies that wave from the corner of cots, are there for adults. The babies are too small and too sick to notice. Their flesh hangs in folds, sagging from stick-like limbs; hip joints shine through tissue-thin skin. Looking at them feels like an invasion of privacy; they should be sheltered by the darkness of the womb, not exposed to the world’s gaze. Some are on their tummies, motionless, like tiny dolls. Others lie as if crucified, splinted arms flung out at right angles, chests and bellies heaving. Mostly they endure in silence, a mute acceptance of suffering; who has breath to spare for crying? The world outside their plastic walls and Gladwrap coverlets is cheerful and bustling. At 10am on this Tuesday each of the 12 intensive-care cots at the Royal Women’s Hospital is occupied, all by babies who arrived long before their time. The smallest was born only 25 weeks after conception, weighing less than a pound. Everything to do with these babies is measured in fractions of normality. A nurse talks about how her charge cannot yet tolerate even a few drops of breast milk and jokes: “She’s a one ml screamer.”
The mothers still in hospital are making their first visit for the day. Some shuffle with the pain of labor-room war wounds and one hauls her intravenous drip on a stand behind her. All carry expressed breast milk, their jars of liquid gold. Jenny Fickling heads first to the bedside of her son Paul, who’s not doing as well as his twin, Sam.She knew twins often came early but had not expected an emergency caesarean at 34 weeks. “I think in a normal pregnancy, you spend the last five or six weeks getting ready to have the baby, getting used to the idea of the baby not being there any more. But this time, I wasn’t ready for that. I still expect to feel them kicking … Not being able to hold them or touch them is made so much worse by the fact that you are not ready for them not to be part of you any more.”
She was unconscious for the caesarean delivery of her first child and delighted this time in being awake to see the boys. But they deteriorated and had to be moved to this neo-natal intensive care unit (NICU). “I cried for 48 hours. I just couldn’t stop. I think the staff here are used to that.” She stopped crying when her twins began responding to treatment: “As long as they’re improving, I can cope with anything.” Jenny Fickling is so focused on the present that the future is a blur. She looks vague when asked about what it will be like to go home leaving her babies in hospital. “Up until now I just wanted them to be alive, so I haven’t really thought about all that yet.”
But her babies, relatively big at more than a kilogram each, have so far had it easy. They have suffered none of the graver common scourges of a neonatal intensive care unit: infection, brain haemorrhages, collapsed lungs, or necrotising enterocolitis (NEC), which destroys a baby’s immature gut. In babies so fragile that they bruise at a touch, all body systems struggle to survive outside the womb.

They have watchful guardians, these babies. Monitors beep and buzz alarms like jittery R2D2s whenever an infant stops breathing (apnoea) or when its heart rate falls (bradycardia). It is a steady background noise, and the nurses are always listening. They move quickly cotside, gently prodding the baby into action, ever alert that, this time, it might take more than a prod. New babies and others who need exceptional care, like those who must be paralysed by medication to stop them fighting the tubes, are nursed one-to-one.

Tayla Morrison, born at 10.45 this morning, has her own midwife. In the two hours since she arrived by caesarean, she has been resuscitated in theatre, hooked up to the half-dozen or so regular wires and monitors of NICU, and been administered a new drug that gives premature babies an artificial “surfactant”, the lining fluid of the lung. Most are born deficient in surfactant, leaving their lungs stiff and hard to inflate. This makes every breath as much effort as the first big puff required to begin blowing up a stiff rubber balloon. Weak babies who tire easily cannot keep that up for long.

The nurses are never still but this is an easy day. At Easter, the ninth floor, which holds this unit and the special care nursery, had 74 babies instead of the usual 60. “I had staff bursting into tears because we had so many sick babies,” says associate charge nurse Anette Keller. The final straw for one nurse came when one of her babies collapsed with pneumonia; Keller used one hand to pump air into the baby with an oxygen mask while patting the sobbing nurse on the back with the other.

A bad day at the office bears no comparison with a bad day in NICU.

Anette Keller will always remember her worst shift, three weeks earlier, when nearly every baby in the unit was in crisis. “They went into shock, they needed morphine, they needed to be paralysed because they began resisting ventilation … One baby wasn’t breathing properly even on ventilation. We had to put some dye down its tubing to find out what the problem was.

“While we were putting the dye down all this blood bubbled up the airway tube; it was bleeding from both lungs. We had to give it blood to try to save its life. In the middle of all this, we used a fibre- optic torch to trans-illuminate its chest and found it had blown holes in both lungs and had pneumothorax, a collapsed lung, on the right- hand side. Half an hour later the other lung went.”
Keller, an intensive-care nursing student and two doctors worked on the baby, pumping in blood and then adrenalin when the baby’s heart rate dropped. Tubes were inserted into its chest to drain the air bubbles that had forced its lungs to collapse. At the same time Keller, who was the nurse in charge of the unit, struggled to keep track of the other babies. All the children, including this one and another who began spitting up the greenish bile of NEC, survived that day.

But there is a ghost baby here today, a full-term baby who died.

Nurses who have been away come on shift and ask quietly how it had gone, always finishing with, “And how were Mum and Dad?” Babies rarely collapse and die suddenly here. When they begin the slow slide, they are given to their parents to hold, and to dress in the pretty smocks made by the kind women of the ladies’ auxiliary. The family are taken to a grieving room where they can be alone to caress their child, cut locks of hair for a keepsake, take the last photographs. They are given a small folder, `In Memory of a Special Baby’, which will have all their baby’s birth information, photos, hand and foot prints, bracelets and cot cards. If the parents choose not to take it, it is filed away, in case they should return years later hungering for something more concrete than a memory.

It is evening now and the mothers who had to go home without their babies come to visit. Carole and Dale Conelly travel from Geelong every day to see their daughter Zoe, born 10 days earlier at 25 weeks after her mother haemorrhaged.

Like the other parents, they sit quietly beside their child, exchanging only the occasional word. The strain of containing their dread shows beneath the pleasant smiles. Carole Conelly says: “You live in suburbia and lead your normal life – all of a sudden something like this happens and it changes all your priorities. What you used to think was important isn’t at all.”
At Zoe’s birth, doctors told Carole her baby had more than a 50-50 chance of surviving. In 1992, no baby born under 24 weeks at the Royal Women’s Hospital survived. Of those born at 24 to 25 weeks, 60per cent were saved; of those born at 26 to 27 weeks, 84per cent were saved.

These days, more than 90per cent of babies born from 28 weeks onwards will live.

What can they expect after such a tough introduction to life? Lex Doyle, associate professor of paediatrics at Melbourne University and a NICU consultant, says the tiniest babies have triple the normal rate of problems such as cerebral palsy, blindness, deafness and mental retardation; seven to eight per cent of them will carry such a disability, compared with 2.5per cent of children who were born at term.

This means, though, that more than 90per cent will survive with their long-term health intact. Which ones they will be is a lottery.

Professor Doyle says: “You might think you can pick the ones who are going to have difficulties when they are in the nursery, but you can’t. You might think it’s going to be the smallest and sickest, but it doesn’t work that way, with a few exceptions.”
Someone once said that there are two kinds of people in the world: those who believe a single life counts for little in the great scheme of things, and those to whom there is nothing more important than the individual life. You have to be the second kind of person to work here. In today’s lecture to NICU nursing students Dr Peter Davis, the staff neonatologist, talks about the mother with fertility problems who had an emergency caesarean at 25 weeks, at potential cost to her own future health, to rescue her baby. “What does this tell us?” he asks the students. They are silent, uncertain. He answers his own question: “That this is a very precious, wanted baby.”
Later, Dr Davis says: “People who look at (these babies) from a distance think of them as looking like dolls or skinned rabbits. When you look at them more closely, you can see in them a whole world of potential. You come to see them as people in peril.”
The unit is not just saving lives but helping to create families.

Videos are made for mothers too ill to leave their beds and parents are encouraged to take over whatever responsibilities can be left to them. Nurse Carolyn Torney makes the premmies tiny clothes: “One Mum came in one Sunday morning and said, `Carolyn, I’ve done the babies’ washing.’ I wondered what the neighbors would have thought of the three pairs of booties and three hats hanging out on her line. But she was able to do something for her babies.”
And, gradually, they become able to do more. At 9.45 on Wednesday morning, Jenny Fickling is given her son Sam to hold for the first time. He nestles under her nightie, against her skin, only his tiny head visible. His mother steadies him with one hand and with the other holds the tubes and wires that connect him to the machines. He cranes his head, ever so slightly, to try to peer at her face; she bends her head to hide her tears. She rocks, back and forth, in the universal rhythm of mothers, holding him. Close to her heart, where he belongs.

Where he has always been.

First published in The Age.