‘DOING NOTHING CAN BE A LOT TOO’
When her daughter was born with a rare form of leukaemia, writer Pia de Jong decided against treatment, which could prove fatal to a newborn. Instead, she told the doctors, ‘We do nothing,’ and – not knowing if her baby would live or die – took her home…
A mother explains why she refused potentially lethal treatment for her seriously ill newborn daughter
When Charlotte is born the midwife is concerned. She points to a bump on the baby’s back, a soft rosy hill. She presses it and when she lifts her index finger, the spot turns blue. Over the next few days the spots on Charlotte’s pale skin do not disappear; they multiply around her body. Our doctor does not know what to make of them so he refers us to the hospital for further examination.
The results of the bone-marrow biopsy are on the table in front of the oncologist. ‘They confirm what we already suspected,’ he says. ‘Charlotte was born with a rare but extremely dangerous form of leukaemia. Sadly her prospects are not good.’
His voice sounds flat, rehearsed. He wants to do this properly. He knows I will remember this conversation for the rest of my life. ‘We have to discuss the treatment plan,’ he continues, ‘choose what is best for Charlotte. The only thing we can offer for leukaemia is chemotherapy. Unfortunately it is very dangerous for children. For newborns it is so dangerous that it can cause them to die. And if they survive, the side effects can be severe. They can become blind, infertile...’
The rest of his words I don’t hear because Charlotte is slurping loudly from my breast. The oncologist looks at her. ‘ To be honest, we don’t know what is best for Charlotte. So little is known about this disease. Only a few articles exist to gather information from.’
‘Can I see those articles?’ my husband Robbert asks. ‘I am a physicist – I know how to read scientific papers.’
The doctor gets the articles out of the binder and puts them in front of us. My eyes wander to the first sentence. ‘In general, congenital myeloid leukaemia is deadly,’ I read.
The room starts to move and slowly I leave my chair and become a bird, floating above it. I see Robbert leaning over the articles. Far below I see myself, the mother who just gave birth, with her limp, pale child in her arms.
The doctor coughs, trying to get my attention. He wants to know what I think. ‘About what?’ ‘ The treatment,’ he says. I put on my sweater and put Charlotte snugly in her sling. ‘What are you doing?’ the doctor asks. ‘I’m leaving.’ ‘You can’t leave just like that, we are here together to discuss the treatment plan.’ I search for Robbert’s eyes. He will understand. ‘We’re not going to treat her. We’re going home, all three of us.’ ‘Are you sure this is what you want? Just waiting, no treatment? People always want to do everything for their children.’ ‘We do nothing,’ I say. ‘ That can be a lot, too.’
***** Robbert leaves to pick up our two boys. I lie on the bed with Charlotte and inhale the aromas of stale sweat, baby shampoo and disinfectant that we carried back from the hospital on our clothes. She searches for her favourite place in the crook of my arm. Together we stare at the ceiling until her eyes fall shut.
My love for her overwhelms me. It is so big it frightens me. ‘Charlotte,’ I whisper, ‘stay with me.’
I kiss her as gently as I can, again and again. My tears drip on to her hair, fine as cobwebs. From her half- open mouth I can smell her breath.
I savour her aromas, trying to find words for them – sweet, round, warm. I want to remember that on this very day she smelled sweet, round, warm. I want to bottle it, to keep it with me. For later.
Sleeping is a waste of my time, of Charlotte’s time. I want my heart to become like a freshly ploughed field where I sow every one of her life’s moments. I will harvest the experiences later. I want to prepare myself for a life filled with memories of her.
Parents always want to do everything for their child, the doctor had said. Not us, I had replied. We do nothing. Why was I so determined just to take her home? Was it the graph showing the statistics, which so clearly demonstrated that children have little chance against this disease? Was it hearing about the side effects of chemotherapy? What all that poison would do to her delicate body? Was it my own fear of facing this ordeal?
The next morning when I am taking Charlotte for a walk, the sky darkens. I duck into the first shop to find shelter and notice I’ve landed in a bookshop. As long as I’m here I might as well start searching for books about grief.
A man with a friendly face walks over to me and asks if he can help. ‘I’m looking for a book about grief. For my young sons. In case the worst happens.’ He glances at my hand, shielding Charlotte’s head. He seems to understand. ‘Come with me,’ he says.
We go to the children’s department where we step over a stuffed toy giraffe. ‘Read this to your sons. It’s a picture book about a rabbit, a duck and a badger who find their friend, a blackbird, dead in the woods. They realise he’ll never fly again, but they each share their dearest memories of him. Children always love stories about animals.’ I start to thank him but he brushes it off. ‘ That’s what I am here for.’
When I get home, the boys, their hair stiffened by sand and dried rain, huddle against me. I love them so much the way they are now. Two carefree boys tumbling over each other. I cannot bring myself to disturb their happiness. I put the book away. There is still time.
*****
In my half sleep I hear Robbert scurrying through the house. I listen to the familiar sounds while Charlotte nestles in my arm. Late in the evening he is always searching for things to inspire him. He browses through books and magazines.
‘I’m awake,’ I say as he comes into the bedroom. I know he wants to tell me something.
‘I found something important tonight,’ he whispers. ‘A blog about a child somewhere in America born with the same disease as Charlotte. And here is the most incredible thing. He is still alive, at eight years old.’
I let Charlotte slip out of my arms and sit up. My heart is thumping and suddenly I am excited about an eight-year- old boy far away on another continent. I want to meet him, look into
Charlotte makes people hold their breath. She reminds us that those we love can leave us just like that
his eyes. My thoughts scatter in all directions. I try to focus on the implications of what Robbert is telling me. ‘So he wasn’t treated, and he survived?’
‘Exactly,’ says Robbert. ‘He went into spontaneous remission.’
I feel like crying and screaming at the same time. I am so energised I could go outside in my pyjamas and run a marathon in my bare feet.
***** My visits to the hospital are starting to blur. The oncologist examines Charlotte in his predetermined routine. I watch him as he studies her skin as if he is trying to decipher a mysterious hieroglyphic.
‘I must tell you something important,’ I stumble over my words. ‘About a boy in America. His name is Sammy.’
The doctor glances up then bends over Charlotte. ‘He has the same illness but he survived. At least he survived until he was eight… there is a blog but we can’t find it again, it’s lost in cyberspace. We need to find out more about him.’
The doctor smiles while examining Charlotte’s delicate feet. A boy lost on the internet does not command his attention. He has eyes only for Charlotte. ‘She does it her way,’ he says when I dress her.
It unsettles us that there is still no change in her health. She is such a fragile baby, tired and listless. Sometimes she seems worse, when the blue tumours on her body multiply and I find them in new places. How long is this going to take? The uncertainty frightens me. I am scared that death will be too rough for my butterfly girl. I am afraid to see her slip away. To be left with her still body, which will no longer cling to mine. But mostly I’m afraid of what comes after that, my empty arms.
Before Charlotte I was careless with my time. Now my world has shrivelled to a cocoon in which I hide with her. Time has shrunk. I think in minutes, live in details. I count the beads of sweat on the forehead of my child. I know by heart the number of T- cells in her blood.
Charlotte makes people hold their breath. She confronts them with impermanence. She reminds us that the people we love can leave us just like that. It is a pain we like to avoid. A child is supposed to hold the promise of a future, making up for the fact that we do not live for ever.
One morning in the hospital, at the end of Charlotte’s checkup, the oncologist puts his hand on my arm and says, ‘I would like to take a new biopsy, from her foot.’ I’m not surprised he wants to know more about the stubborn large nodules on her feet. ‘We want to understand what’s going on with the DNA. Maybe this new insight can help her.’
As we peel away Charlotte’s clothes, he listens to her heart, takes her blood pressure and examines her skin. Then he picks up a cotton ball and disinfects her skin. I hold her close as he takes her foot in his latex glove. Then he drops his hand. ‘I’d rather not do this… what if I damage something, a tendon, a nerve? I would not forgive myself if she could not walk because of this.’
Slowly I turn to him. For the first time we do not look away but stare into each other’s eyes. The man who holds the key to the health of the sweetest and most delicate person in my life, who can read and explain her blood, now tells us what we dared not imagine: the possibility that Charlotte might one day walk.
***** ‘The spot on her back has disappeared,’ says Robbert. We are about to bathe her. Curious, I trace the tips of my fingers along her back. The blue place that the midwife noticed when she was born has vanished.
‘ This is really significant,’ Robbert says. ‘It was the first and the largest. I do not understand how she did it, but she has overcome this on her own.’
‘Her skin is cleaner every time,’ says the oncologist. His remarks make me weak with joy. Healing is still too large a word to grasp, but the future becomes less bleak.
Robbert and I wonder if it might be possible that she will get better soon. And she does. She looks less pale, is not exhausted all the time. Gone is the girl who seems to be on the verge of disappearing into her own faraway world. Carefully we make plans for the summer. Recklessly we measure her, look at her growth curve and predict her height and weight. What will she become, later when she is all grown up? We still live in a dense fog but occasionally a light shimmers through.
Charlotte is better every day, livelier. ‘Her skin is clean,’ the oncologist says after her checkup. He sounds surprised as well as relieved. Charlotte lies on the exam table, her feet paddling in the air. I have been making a game of it by trying to catch her toes. ‘The tumours are gone. What we hardly dared hope for has happened. She is in remission.’ Like me, he seems to find it hard to believe. ‘For good?’ ‘In my profession this is as close as I can give you to certainty. With adults, if after five years the leukaemia has not returned, we consider them cured. It’s harder to say with babies.’
He has never used words like remission or certainty. Five years seems like an unimaginably long time. I do not know if I should be happy, or rather how much happiness I should allow myself to feel. It seems too good to be true. I start to shake so strongly that I hold on to a chair. The doctor puts his arm around me. Tears roll down his cheeks. ‘There were times when I thought she could not handle it, that the disease would take a wrong turn. I’m so proud of her, she really did it her way.’
I put Charlotte beside me in the car seat and drive away. Everything is different. I cannot believe that she has healed, that all is well and that one day she will walk on those delicate feet of hers. I know that I will spend the next few years bending over her body in search of blue spots, but this is the moment I have been waiting for. I pull over and while I try to calm down I see the hospital in my rear-view mirror. I take Charlotte out of the car seat and hold her close to me. She smiles.
‘Charlotte,’ I whisper. I know she understands what happened. She has spent a year trying to get better. I rock her in my arms. A year ago, on a hot day like this, I gave birth to a daughter. A girl we gave the most beautiful name in the world. Today she is born again, this time in a healthy body. Charlotte’s blood is still clear. She is now 17 years old. n This is an abridged extract from Saving Charlotte – A Mother and the Power of Intuition by Pia de Jong, to be published by WW Norton & Co on 21 August, price €18.99
I cannot believe that Charlotte has healed, that all is well and that one day she will walk on those delicate feet