AT 12.10pm, on December 13, 2003, I lay under an enormous operating light. Through tears welling in my eyes, I counted 12 people fussing. Nurses, anaesthetists, neonatal staff, obstetric team. Two teams: one for me, one for my baby.
When I looked at the intensive care cot being readied in the corner, I shook with fear. It just didn’t feel right. It’s too soon, the words kept going around in my head. It’s too soon. Dr Brieger took my hand and squeezed it.

“How many 26-weekers have you delivered?” I asked through tears.

“Heaps,” he said reassuringly.

“How many have survived?” I asked.

“All of them,” he said, and I knew he was lying, telling me what I wanted to hear.

Jackson Nelson Fisher was born in Sydney’s Royal Prince Alfred Hospital at 1.20pm. He weighed just 958g, two pounds on the old scale. They wheeled me to my room and Andrew bounded in like an excited labrador puppy. “Oh Jane, he’s beautiful,” he said, so terribly excited and as proud as any father could be. Andrew had always been a naturally optimistic person, a Tigger to my Eeyore.

All I could think was that Jackson only had an 80 per cent chance of survival. While 80 per cent may be good in any other setting, if your child has a one-in-five chance of dying, that’s just too bloody high odds.

I was pushed along in my bed to the neonatal unit. It was like a futuristic cloning lab, with eight humidicribs dotted around the brightly fluorescent-lit room. Inside each makeshift plastic womb were tiny, tiny babies clinging to life. The air carried the distinct smell of antibacterial handwash, the hiss and hum of the ventilators punctuated regularly with the pinging of various alarms. They pulled my bed alongside Jackson’s humidicrib. I strained to see through the plastic sides, which were opaque with condensation. Jackson’s skin, still transparent, just wasn’t ready for the outside world yet. They had painted him with medical-grade lanolin to keep his body heat in. The nurse wiped the inside of the plastic so I could see my son better. Through the pills of moisture I saw my baby boy – my tiny, tiny, tiny boy. His head and body together were the size of my hand with skinny little legs flayed out to the side, but he was just beautiful with long fingers and a head of dark hair. There were so many wires and tubes hooked up to him; I could barely see his face. I put my hand through the porthole to touch him. His tiny fingers grasped my index finger and hung on for dear life. I fell hopelessly in love.

December 15. Two days old. You have EEG pads attached to your head, monitoring for any brain bleeds. A ventilator tube down your nose, and tubes coming out of what’s left of your umbilical cord. You’re wiggling around like no-one’s business and you keep kicking away your tiny nappy. I have only held your hand but I wish I could cuddle you with all my heart. Your nurse says you’re quite a fighter and strong-willed. You keep pulling the electrodes off your head! By early evening you wouldn’t settle. The nurse suggested I put my hands in and lay them across your legs and your arms and chest, to hold you “in”. It seems to work; you visibly relax.

Most premature babies die in the first week of life. For the first time in my life, I felt real fear; knee-shaking, breath-quivering fear as I tried to comprehend the minefield that was laid out before this little baby, no bigger than a Coke can. First there was the risk of brain haemorrhage. Were there to be a bleed, he might end up with cerebral palsy, or it might kill him. His lungs were bad. Before 28 weeks, the millions of tiny sacs that make up lung tissue are not yet formed and collapse on each other, causing “respiratory distress syndrome”. And for every life-saving treatment or drug, there was a downside. The ventilator can damage the fragile, half-formed lung tissue; getting off it quickly is important. The extra oxygen used to compensate for bad lungs can cause eye damage, even blindness. It might be necessary to use steroids to help his lungs but they can affect brain development. There was a valve open in his heart that was supposed to be shut, and this was making his lungs worse. He would need drugs to close the valve and, if that didn’t work, surgery might be necessary. And hospitals are full of bugs, humidicribs a prime breeding ground. Almost all premature babies get an infection. They’re sitting ducks.

December 16. Three days old. I’m feeling very sad today that my body let you down and you found yourself out in the world far too soon . . . all I can do is hope you find the strength to battle, which is a very big ask for such a little boy. If you can get through this you can get through anything, my little one. I love you so much. It’s amazing how nothing else matters anymore. I haven’t even read a newspaper yet. Saddam was caught – on your birthday! Big deal! You’re the most important thing now. I watch your chest rise up and down and pray with each breath you get stronger and bigger. We have wonderful things planned for you.

Jackson’s lungs were the major issue. We agreed to start steroids on day eight to help him off the ventilator. His breathing improved, but then he became anaemic. He needed a blood transfusion; it felt like one step forward, two steps back. Finally he got off the ventilator and on to a contraption known as CPAP – continuous positive air pressure. He hated it – it must have been like hanging your head out of a car at 100km/h. If Jackson didn’t like something, the fight was quite extraordinary. Thrashing around, crying and pushing hands away. But as distressing as it was to watch, it was the fight in him that gave me the most hope.

On Christmas Eve, 11 days after his birth, I finally got to cuddle my baby. The nurses juggled all the wires and tubes and placed him in my arms. He was so light, so tiny and I couldn’t stop the tears, they dripped all over his little head and then he just went to sleep in my arms.

He grew gram by gram. Day after day, week after week I sat with him, willing him to grow bigger, reading him chapters of Winnie the Pooh so he would get to know my voice. After six weeks, on his last day in intensive care, my parents came down from Queensland. When Mum saw him, still a tiny 1700g, tears sprang from her eyes. She had never seen such a small baby. He was moved to the next level of care that day, a step down, and the mood was immediately lighter.

Jackson needed oxygen piped through nasal prongs to help him along and it meant he had no chance of getting home until he was at least 100 days old. Life had become a routine of waking up at 2am and 6am, expressing milk, ferrying it to the hospital, spending all day with Jackson, Andrew popping in after work and then me coming home late at night. The nights were hard. More than once I woke up in a sweat, heart banging in my chest, frantically looking for my baby.

March 23, 2004. 100 days old. When I walked in this morning you had a banner above your bed: “Happy 100th day Jackson”, complete with balloons. The lovely nurses did that for you. I brought in a chocolate mudcake and we all sang Happy Birthday to you – I cried. I can’t believe what you’ve been through and I can’t believe you made it.

April 9, Good Friday. You’re home! We walked in the door and put you in your pram and both cried. I feel relieved, scared, frayed, and altered by the whole experience. You’re home now, my darling, bless you and this house and I thank God for answering all my prayers. Your discharge weight: 2.49kg – five pounds.

Autumn in Sydney is spectacular. I hooked up the portable oxygen tank and went for a walk along the harbour foreshore each morning, taking in the sunshine. It had always been my favourite time of year and now it was just perfect. I was so excited about showing Jackson the world: the green grass, the trees, the blue harbour, the boats. But he loved his walks so much that as soon as I got him out the front door he’d shut his eyes and snooze for the duration.

May 10. You smiled at me today for the first time. You looked up at me, smiled and cooed. I got a tear in my eye. Very, very rewarding and oh, what a smile.

A few weeks after my 40th birthday, Jackson slowed down again. It took an hour to feed him a bottle of expressed breast milk one morning. The next day in hospital he threw up his milk and appeared to be choking. The fear and panic in his eyes rocked me to the core. He went into respiratory failure. Dr Osborne, the neonatal paediatrician on call that weekend, said we would have to ventilate him. From the corridor outside the neonatal intensive care unit, I heard my son scream like never before and then there was quiet. I collapsed into Andrew’s arms; fear had taken my breath away.

Jackson stayed on the ventilator for ten days. Doctors theorised he had had his first cold. He was now five months old, or “two months corrected”. We had to stay in hospital until he fully recovered and during this time he entered that wonderful phase of gurgles and giggles. He had a smile for all his favourite nurses. I passed the long hours drawing him pictures to stick on the plastic sides of his cot. I drew elaborate snails and ladybirds. He’d open his eyes and see his new picture and a big smile would spread over his gorgeous little face.

After five long weeks, we were told it was time to go home again. As soon as we got home, though, I could see fear in his eyes again. He was having what looked like panic attacks. He wouldn’t take his evening feed. Something wasn’t right.

As I wheeled Jackson back into his old ward, I looked down at him and he was looking up at me, smiling a strange, knowing smile. Cheeky monkey! Tests showed he was on the brink of another respiratory failure. Plans were made to transfer us to Westmead Children’s Hospital as soon as possible.

June 28. The head of ICU says you’re on a knife-edge, a cliff, lots of analogies, but perilous is the best word to describe this dreadful combination of chronic lung disease and pulmonary hypertension. I’ve spent all day trying to keep you calm when my own knees were knocking under the cot. I have faith in you to pull through this, you’ve shown me many times you desperately want to be here. My job is to help you do so. Now, hurry up and get well, little man.

On June 30 they found Jackson had acquired septicaemia; the dreaded superbug golden staph had entered his bloodstream. It is a killer infection and he was already on his knees. I only had one page left of the journal I had been keeping ever since I fell pregnant. It simply couldn’t end there. Jackson remained in a drug-induced coma for weeks, hanging on precariously. My arms ached from not being able to hold him.

July 2. I spend my days here with you, humming songs, laying my hand on your head and just letting you know I’m here. I keep telling you I’m here and that soon we’ll go to the beach with a bucket and spade and have a nice time. There are wonderful gifts to be had in life. I fear all these drugs, etc, may have an effect on you. It won’t stop me loving you, but I hope you never suffer any cruelty.

July 19. In seven months, you’ve had just six weeks at home. It’s so depressing when I think about it, so it’s a good idea not to think about it. You’ve been ventilated now for 25 days.

The next morning, the specialist walked into Jackson’s room accompanied by palliative care expert and intensive care specialist Dr Jonathan Gillis. “There’s no real improvement,” the specialist said softly. “We’re going to keep treating him, but I think he’ll probably die.” Dr Gillis sat there, shaking his head.

“What?” I couldn’t believe my ears.

“I think he will probably die,” he repeated, again softly, but there was nothing soft about those words.

July 20. I don’t want to commit to writing what the doctor said today, but it wasn’t good. You discovered sticking your tongue out and in and it’s fun. I think you even smiled this evening. I was sticking my tongue out and you were sticking yours out and you found it funny. Precious boy. These moments are so special. Your dad and I have to reaffirm our faith in you. Your dad says if anyone can make it, Jackson can.

Jackson got another serious infection, and again he was put into a drug-induced coma for his own survival. Days turned into more weeks. Andrew took time off. We moved into a family room in the hostel and we split the 24-hour bedside vigil.

Paediatric intensive care wards are scary places. The children are too sick to cry. The only cries you hear are from desperate parents facing their worst nightmare. I mastered the silent scream in that toilet down the hall to let the madness out.

On August 9, we got “the talk” from Dr Gillis. He spoke in the hushed tones we had grown to hate. “Look, this isn’t working. He’s in 100 per cent oxygen, his pressures are high, he has five chest drains in, he is in a coma. He can’t climb out of this,” he said. We knew we were being asked to consider what no parent should ever, ever have to think about: turn off the life support on our own child. No, no, no, no, no. Never . . . I just have to get him out of here. He’s only eight months old.

“This is not acceptable,” I said with hushed outrage, my fists clenched.

“Of course it’s not acceptable,” he replied, like that somehow made sense.

August 24. I climb into bed with you each morning and attempt to give you a cuddle as best I can. I hold your hand with one hand and put my other hand under your right leg and buttock and I put my lips to your head and dream that we’re at home and you’re in bed with me having a morning cuddle. As I write this I feel so ripped off. Why? I’m so angry at the world, I want to absolutely pull my hair out and yell and scream and kick. Why. Why, why?

On August 29, Jackson’s temperature was high and despite the multitude of painkillers, he was crying – hard. He hadn’t really cried at all for the whole 9½ weeks out at Westmead, his personality bombed out on diazepam, morphine, clonidine and more. Now, he was crashing fast. He would probably have a cardiac arrest within the day. Jackson quieted for a moment and looked up at me, a long, long look with his beautiful grey eyes. I instinctively knew he was saying goodbye. Tears welled in my eyes.

Andrew did the night shift and went to bed at 6am. I woke him at 10am. We went to a little room down the corridor from Jackson’s room. There we made the only loving decision we thought we could – to sedate him, hold him, love him and let him go peacefully.

I held Jackson’s hand. Andrew found the doctor he liked the most. “We can’t do this to him anymore,” he stammered. The doctors and nurses moved quickly. They closed the curtains with the cartoons all over them. It was a sign we had seen many times in that ward, a sign that all had failed. They placed my precious baby in my arms. It had been such a long time since I held him. I sang to him. Andrew, sitting next to me, broke down. I told him not to cry yet. I tried to hold it together so Jackson would not know.

I don’t remember how long we sat there. The world stopped. Jackson’s world. Our world. I felt him leave, though, and he had the life force of a giant. He so wanted to live. Then the tears finally came.

It grew dark, and it was raining outside. The window reflected the image of me holding my own baby. I was rocking, the way a mother instinctively does. The image that stared back at me, it was so inconceivable. I could see the horror in my own eyes.

That Christmas, I had my first Jackson dream. I went sleepwalking, looking for him. When I couldn’t find the bassinette, I went to Andrew’s side of the bed, frantic, and woke him. “I can’t find Jackson,” I said with panic. “I know,” he said sadly. I woke up at that point and remembered he was dead.

A few days later, I discovered I was pregnant. I felt pure terror, but also a fragile glimmer of hope. Maybe there could be a life worth living after all. It had only been four months since we lost Jackson. Plenty of people said it was too soon. But I was grateful. I knew I would grieve Jackson for the rest of my life – nothing would change that.

August 29, 2005. My darling Jackson, a year has passed since I held you in my arms that dreadful afternoon. I would have thought the passage of a year would lessen the pain. It has not. I miss you, long for you. Your loss created a beast I had to learn to live with – grief. I fell pregnant shortly after losing you – too soon no doubt, but Andrew and I told each other you had something to do with it. On 20 July your baby brother was born. He has everything I failed to give you: his health from being born full-term. Samuel makes me smile, but he is not a replacement for you. I love him very much and I’m so glad I faced this day with him in my arms. The hope he has given me is so, so important.

I’m so tired now, little man, emotionally drained by the events of the past year. I don’t know if I’ll ever be whole again – all I know is that I miss you terribly. It scares me sometimes that I’m starting to forget little bits; I try hard to keep memories alive. It’s such a double-edged sword – the pain is alleviated with some memory loss, but memory is all I have left. n

Edited extract from Three Seasons by Jane Hansen (Macmillan), published September 25.

Article from: Courier Mail

IMAGES of the tiny feet of baby Amillia Taylor, born in Miami at 21 weeks, were a poignant reminder of the tenuous start to life for very premature babies. It again raised the question: is intensive care for the tiniest and most immature babies worth it?

While parents are faced with one of life’s most heart-rending questions over survival and quality of life for their child, doctors must try to make the best ethical and rational judgments. Most babies are born on time, after 37 to 41 weeks of pregnancy, and are of normal birth weight; 2500g or more. But about 6 to 7 per cent are born prematurely (before 37 weeks) or with a low birth weight (less than 2500g). Even fewer (0.5 per cent) are either very premature, before 28 weeks, or weigh under 1000g.

Caring for the tiniest and most immature babies always involves intensive care. That care is expensive. The cost is measured not only in financial terms, but also by the amount of illness caused by the inability to fund alternative health care programs that have to be foregone to finance neonatal intensive care. For those responsible within the health care system, including those who treat the babies directly, it is obviously vital to evaluate neonatal intensive care thoroughly and compare it with other care programs.

The effectiveness of neonatal intensive care over time is best illustrated by the steadily increasing long-term survival rates in babies born weighing between 500-999g in Victoria over successive eras – from one in four in the late 1970s to three in four by the late 1990s. At the same time the rates of problems with thinking, hearing, walking, talking or seeing in the survivors have remained relatively constant. They affect about half of these children.

At first glance it seems these problems occur far too often and services to help disabled children will be quickly overwhelmed. But about 18 per cent of children who are born on time and who are of normal birth weight will also have these problems. We know this because we have been assessing the long-term outcomes for not only the tiniest, most immature survivors, but also equal numbers of normal birth weight children born on time.

There is no doubt that the overall rate of problems in tiny survivors is too high. At present there are a large number of expensive trials before, during and after birth that have as their major goal to reduce the rate of these problems. Much more research will be required. To fully evaluate neonatal intensive care for the tiniest babies we need to how the changing cost relates to the change in outcomes over time.

These costs are largely determined by how long these babies need help with their breathing after birth. The tiniest or most immature babies cost about $2000 a day in intensive care. They will remain in intensive care until their originally projected birth date. But there is no birth weight or age group where the costs are so high as to even consider withholding intensive care on economic grounds alone.

Neonatal intensive care compares very favourably with most other intensive health care programs, such as adult coronary care, kidney dialysis or organ transplantation. Perhaps surprisingly, neonatal intensive care also compares favourably with many non-intensive health care programs, such as treating high blood pressure or high blood lipids. In the final analysis, the answer to the question of the value of neonatal intensive care will vary with the perspective of the people asking the question. The perspective could be that from across our society but we cannot expect every person in the community to know or understand the issues involved.

Within the hospital, the medical, nursing or other staff have their own views. Then, of course, there are the views of the mothers and fathers of these very tiny babies, both before and after birth. It is important to realise that these views can change with the circumstances of their child. There may be a collective decision between parents and caregivers that intensive care is not warranted at 23 weeks of gestation, whereas it might be warranted after that time.

Survivors of neonatal intensive care usually rate their own health outcomes as superior to that as assessed by health professionals, so they think neonatal intensive care is well worthwhile. Increasingly we will also be able to ask the children of these survivors. Of the many premature babies followed into adulthood by the Royal Women’s Hospital who are now parents, all have so far had children who were not born too early and were of normal birth weight.

The conclusion is inescapable – neonatal intensive care for very tiny or immature babies is clearly worthwhile from all viewpoints that matter.

* Prof Lex Doyle is head of Clinical Research Development, Royal Women’s Hospital

Article from news.com.au