'There is nothing special about you or your ill baby': A doctor's words that Jane Caro still lives by.

‘There is nothing special about you and there is nothing special about Polly. Terrible things can happen and they can happen to anyone. Safety is an illusion. Danger is reality.’

I obviously looked as shell-shocked as I felt, because Dr Peter Barr had had no trouble identifying me. He walked straight up to me, sat down opposite and, without any niceties, launched straight into the words above. Words that were to change my life.

Maybe it sounds brutal, written down baldly like that, but it was exactly what I needed to hear. Ever since Polly had stopped breathing the night before, I had been obsessively wondering what I had done wrong.

Was it that glass or two of wine I had before I knew I was pregnant? Had I exercised too much? Was it stress from losing my job? Was it all the dieting I had done in the past? Then my thoughts turned superstitious. Had this crisis happened because I had been in room 13 when I finally got that private room I’d been so desperate for? What had I done? How had I caused this? What could I have done to change things?

I was desperately trying to hold on to some sense that I was still in control. I wanted to believe that if I could just find the right formula – the right magic spell, if you like – I could keep Polly safe. As Peter Barr spelled out the brutal reality, I gave up that idea. I understood that all I could do was deal with whatever it was I was going to have to deal with. I could do nothing about what was happening to my daughter. It was out of my hands. The only thing I could control was my own reactions and behaviour. The letting-go of control that started at that moment, in that coffee shop, would eventually change everything.

I don’t remember anything else about our conversation. I just remember those words. They became the mantra I live by to this day.

When I woke the morning after Polly had been rushed into intensive care, having snatched a few hours’ sleep in the breast- feeding room off Faithful Ward (having dreamt I had cancer), I did what I had learnt to do. I reached out for help.

The first person I rang was JuJu Sundin, with whom I had done my prenatal exercise classes. I did this because she had asked all the expectant mothers who attended her classes to keep her posted and I took this as permission to tell her my story. It turned out to be one of the most important phone calls I have ever made.

JuJu listened without interruption before she gave me advice.

‘When you get off the phone with me, I want you to call Dr Peter Barr. He works at the children’s hospital, so you should be able to find him via the switch. He’s a neonatologist, but he’s also a grief counsellor. Ask him to meet with you as soon as possible. Tell him I told you to call.’

I did as she said and rang Peter Barr. I told him all that had happened the night before.

‘I’ll meet you in the coffee shop in five minutes,’ he said.
‘How will I know you?’
‘Don’t worry,’ he said. ‘I’ll know you.’

I don’t suppose we spent more than thirty minutes together in that dreary cafe in Royal Alexandra, sipping our (not very good) coffees, and, apart from his one quick visit to intensive care, I never saw him again – but in two sentences, he changed my life. I don’t even recall what he looked like, but I will never forget him.

***

Lower Todman intensive care was at the end of a long corridor with two sets of doors. You could let yourself through the first set to a small area where you washed your hands and put on a gown, but you had to ring a bell and wait to be approved before being buzzed into the actual ward itself.

Polly was dwarfed by the adult-sized bed on which she lay. There was plenty of room for all the tubes, bandages, monitors and drips that so covered her tiny body that only her right hand was left free. Her face had puffed up overnight. It was a reaction, the nurse said, to the oxygen they were pumping into her body.

In stark contrast to Faithful Ward, every patient in intensive care had a dedicated nurse. I introduced myself to Debbie, Polly’s nurse, and sat by the bed stroking my daughter’s free hand. Looking at her poor battered little body, I instinctively started to say something to her that I was to repeat over and over in the days that followed.

‘I am your mother and I don’t hurt you. I am your mother and I don’t hurt you.’

I kept that promise to the letter. I refused to help the staff with any procedures that were painful – and there were many of them. Every two hours, intubated patients had to be suctioned. This meant forcing a tube down into their lungs to suck out the fluid that accumulated as a result of the mechanical breathing. It was horrible. Every time it happened (every two hours, in other words), I got up and left. I did that for two reasons. The first was I couldn’t bear to watch Polly fight hopelessly and feebly against the horrible tube. And the second was because I did not want even her subconscious to associate me with pain. At least she was very young and could not anticipate. Watching older intubated babies and toddlers when they realised they were about to be suctioned was really ghastly. They were terrified and struggled and fought as hard as they could.

There were other painful procedures, too; heel pricks and the appropriately but gruesomely named stab gases. Heel pricks were administered by what was called ‘the blood nurse’. Ralph rounded on the poor woman one day as she stuck yet another needle into our daughter, making her stir only to cry.

When they weren’t hurting her, for those first few days, she was unconscious.

‘Do you enjoy your job?’ Ralph demanded of the nurse.

It wasn’t fair and we knew it, but it was awful to see our defenceless baby constantly under physical attack – even if kindly done and kindly meant, even if only done to save her life. We apologised to the blood nurse later and she was very nice about it. ‘Don’t worry,’ she said. ‘You’re not the first parent to lash out, nor will you be the last.’

The stab gases were even worse. They had to test for the exchange of gases (oxygen for carbon dioxide) in Polly’s blood to make sure she was getting enough oxygen. They had to get a sample of the blood from her arteries as well as from the veins, which were much easier to access. To get to an artery, they literally had to stab her with a large needle. I wept copious tears over that. So did she.

During that first morning, as Nurse Debbie got ready to suction Polly, she warned me I might prefer not to stick around for the process. As I walked down the corridor from Lower Todman, I ran into my paediatrician; the same doctor who – only yesterday – had taken Polly off the monitors because Ralph and I were ‘overreacting’. He had the grace to look a little shame-faced.

‘Well,’ he said, ‘I never expected that to happen!’
‘No,’ I said, ‘it seems you didn’t.’
And I kept walking towards the public phone.

It’s funny. I can still remember what I was wearing on that dismal but eventful day. It was the 1980s and I had an oversize khaki jumpsuit (everything in the 80s was oversize) that – when not pregnant – I cinched in with a wide belt. It buttoned down the front, making it easy for breastfeeding – not that that was an issue anymore. I was back to the breast pump beside a hospital bed. Polly didn’t need the milk; all they were giving her was glucose and water.

‘She has to concentrate on breathing, not digesting,’ Nurse Debbie had explained.

Thanks to the jumpsuit’s generous proportions, since having Polly I was still able to wear it with the belt let out a few notches. I’d pulled it on in that grim little breastfeeding room that morning and shoved my hair behind my ears. I moved out of that room that afternoon.

Now that we had a child in intensive care, the hospital provided accommodation for both Ralph and me. It was very basic, just two single beds in a small cell-like room in what used to be the nurses’ hostel. There was a window looking out to a grimy brick wall and a phone on the small set of drawers between the beds. (My biggest dread was that phone ringing in the middle of the night; all the parents dreaded it because we knew the medical staff would only disturb us if there was a life-threatening crisis.) There was a shared ablutions block with showers and toilets. Privacy was hard to find. This was difficult, because throughout all this I was, of course, also coping with the permanent period that follows birth and lasts for up to six weeks. Nature doesn’t treat new mothers very well. From the state of the accommodation, it was clear hospitals hadn’t treated their nurses very well in the old days, either.

Ralph went to work for a few hours each day while I spent all my time next to Polly’s bed, with regular interruptions for painful procedures. Ralph joined me there whenever he could. We became familiar with the rhythms and routines of intensive care. Each baby and toddler had a nurse permanently stationed at the end of the bed. Parents – shell-shocked and weary-looking – sat in plastic chairs beside that bed. Children with depressed immune systems were cared for in rooms off the ward. There was a tiny girl from Fiji who’d had a liver transplant in the room nearest Polly. We were on nodding acquaintance with her parents. A young boy was admitted with horrific internal burns that he’d received while playing a silly game with methylated spirits and matches (in shock, he’d breathed the flames in). Ralph became very friendly with his devastated father. Intensive care in a children’s hospital is well named. It is an intense place and no-one ever wants to find themselves inside that ward, but there were some good things about it.

The most important was that we never felt fobbed off and our fears and concerns were taken seriously. On that first day, when we were briefed by the intensivist (as the doctors who specialise in intensive care are called), he told us that we no longer had to fear that Polly would stop breathing: ‘She has no choice. We are doing her breathing for her.’

He continued, ‘We just have to wait out the infection in her lungs. She has a ninety-nine per cent chance of recovering completely and I couldn’t say better than that if she had something simple like tonsillitis.’

His words were comforting, even if I couldn’t quite bring myself to believe them.

Twice a day, when one shift handed over to the next, the medical staff went from one patient station to another to be briefed. The staff pulled no punches. If your child was improving, they said so. If she was getting worse, they said so. We quickly learnt to trust them. For us, each handover was a relief. Little by little, Polly seemed to get better. We had been told that the first step in the right direction was to wean her off the intubation, put her in an oxygen box – a perspex box that fitted over her head, filled with warm, moist air with an artificially high level of oxygen to help her breathe easily on her own. The next was to get her breastfeeding again. Then she would move from intensive care back into Faithful. After that, unimaginably, the next step was home and real life.

Twice a day, at handover, we could see the intensivist had been right. We just had to wait out the virus. The news for the little girl from Fiji was not so good. Every day the debrief became a little less positive. Her body was rejecting the transplant and the drugs were not having the desired effect. We felt dreadful for her parents, who hung off every word of the briefing, as we all did.

It was a red-letter day when they decided to remove the intubation tubes and put Polly in an oxygen box. She immediately became more wakeful. It also meant no more suctioning. The heel pricks and stab gases continued, unfortunately. They also began to feed her a little of my hand-pumped breast milk via a nasal gastric tube. She had lost a lot of weight, something that became very obvious now she was no longer being artificially inflated by the intubator. The milk I was able to extract was beginning to dwindle, but they told me to persevere. How I grew to hate that breast pump; my wrists and arms ached constantly, but I did it for hours and hours a day. The resulting milk was refrigerated and a small amount was fed to Polly as she gained strength, but most of it was simply poured down the sink.

We had few visitors. My mother came and herded Ralph and I out of the hospital every day to have lunch, just as she had when we were in Faithful. It frightened me to leave – although less so than it had when Polly was in the babies’ ward. I knew her every vital sign was being carefully watched now. But it was good to get out of the hospital grounds and see the real world going about its business as if nothing had happened.

One day, much to my surprise, my obstetrician Sue Fleming turned up. She had a meeting with a colleague at the children’s hospital and thought she’d drop in to see how I was doing at the same time. I really appreciated that. It was then that I felt my decision to choose a female obstetrician who had children of her own had been a good one.

Very slowly, Ralph and I began to allow ourselves to believe that Polly might really be going to recover and we might finally get to take her home. My life had been nothing but hospitals for more than a month. Then, just when it seemed the end might really be in sight, in the middle of the night, the phone between our beds rang.

‘Mrs Dunning?’ (It wasn’t a name I used but there were much more important things to worry about just then.)
‘Yes?’
‘Polly’s mum?’
‘Yes?’
‘Can you get down to Lower Todman right away?’
‘My husband too?’
‘No need. Just you.’

My anxiety subsided a little. If they didn’t need Ralph, then it was unlikely she was about to die.
‘What’s happening? Is she all right?’ Ralph was starting to get out of bed.
‘I don’t know. But I don’t think it can be serious; they only want me, not you.’
‘I’m coming anyway.’

We hastily pulled on our dressing gowns, and raced through the dark and freezing hospital (it was almost June). Polly had seemed much better only a few hours previously when we’d left her.
Lower Todman was a blaze of light and activity, as always. A male nurse was standing at the end of Polly’s bed with her in his arms. I recognised him. He was the nurse who had assessed Polly as the sickest child in New South Wales the week before and given her the last available neonatal bed in the state. She was now squirming in his arms, screaming her head off.

‘Mum?’ he said, as soon as he saw me.
‘Yes.’
‘This child is starving. I think you should breastfeed her right now.’

I sat down in a chair and he handed the furious baby over. Once I’d undone my gown and nightie, she practically leapt through the air and latched on. She began sucking vigorously. Everyone nearby burst out laughing. Right from the beginning, we had been told that being able to feed properly on her own was one of the best signs she was on the road to recovery. I had cause to be grateful for my weary persistence with the breast pump. Dwindling though it was, at least I had some milk left to give her.

This is an edited extract from Plain-Speaking Jane by Jane Caro published by Pan Macmillan, available now.