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07/08/2017 Pia de Jong on why she refused treatment for ill baby | Daily Mail Online

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'Stay with me, I whispered': When her

daughter was born with a rare form of

leukaemia, one mother decided

against treatment. Instead, she did

nothing and took her baby home not

knowing if she would live or die

By PIA DE JONG

PUBLISHED: 00:41, 6 August 2017 | UPDATED: 13:39, 6 August 2017

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

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 �inger, 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 con�irm what we already suspected,’ he says. ‘Charlotte was born with a rare

but extremely dangerous form of leukaemia. Sadly her prospects are not good.’

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Pia de Jong with newborn Charlotte. When Charlotte was born with a rare form of leukaemia,Pia decided against treatment

His voice sounds �lat, rehearsed. He wants to do this properly. He knows I willremember this conversation for the rest of my life. ‘We have to discuss the treatmentplan,’ he continues, ‘choose what is best for Charlotte. The only thing we can offer forleukaemia is chemotherapy. Unfortunately it is very dangerous for children. Fornewborns it is so dangerous that it can cause them to die. And if they survive, theside effects can be severe. They can become blind, infertile...’

The rest of his words I don’t hear because Charlotte is slurping loudly from mybreast. The oncologist looks at her. ‘To be honest, we don’t know what is best forCharlotte. So little is known about this disease. Only a few articles exist to gatherinformation from.’

‘Can I see those articles?’ my husband Robbert asks. ‘I am a physicist – I know how toread scienti�ic papers.’

The doctor gets the articles out of the binder and puts them in front of us. My eyeswander to the �irst sentence. ‘In general, congenital myeloid leukaemia is deadly,’ Iread.

The room starts to move and slowly I leave my chair and become a bird, �loatingabove it. I see Robbert leaning over the articles. Far below I see myself, the motherwho 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.

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I put on my sweater and put Charlotte snugly in her sling.

‘What are you doing?’ the doctor asks.

Pia with Charlotte as a toddler. Pia writes: 'Parents always want to do everything for their child,the doctor had said. Not us, I had replied. We do nothing'

‘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, �ine

as cobwebs. From her half-open mouth I

can smell her breath. I savour her

aromas, trying to �ind 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 �ield where I sow every one of her life’s moments. I will harvest the

experiences later. I want to prepare myself for a life �illed 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?

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The next morning when I am taking Charlotte for a walk, the sky darkens. I duck into

the �irst shop to �ind 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 �ind

their friend, a blackbird, dead in the woods. They realise he’ll never �ly 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 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

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Pia with Charlotte in 2015. For the �irst year of Charlotte's life Pia was prepared for the worst

‘I must tell you something important,’ I stumble over my words. ‘About a boy inAmerica. His name is Sammy.’

The doctor glances up then bends over Charlotte. ‘He has the same illness but hesurvived. At least he survived until he was eight…there is a blog but we can’t �ind itagain, it’s lost in cyberspace. We need to �ind out more about him.’

The doctor smiles while examining Charlotte’s delicate feet. A boy lost on theinternet does not command his attention. He has eyes only for Charlotte. ‘She does ither 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 bodymultiply and I �ind them in new places. How long is this going to take? Theuncertainty frightens me. I am scared that death will be too rough for my butter�lygirl. I am afraid to see her slip away. To be left with her still body, which will no longercling 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 acocoon in which I hide with her. Time has shrunk. I think in minutes, live in details. Icount the beads of sweat on the forehead of my child. I know by heart the number ofT-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 liketo avoid. A child is supposed to hold the promise of a future, making up for the factthat we do not live for ever.

One morning in the hospital, at the end of Charlotte’s checkup, the oncologist putshis hand on my arm and says, ‘I would like to take a new biopsy, from her foot.’ I’mnot 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 canhelp her.’

As we peel away Charlotte’s clothes, he listens to her heart, takes her blood pressureand examines her skin. Then he picks up a cotton ball and disinfects her skin. I holdher close as he takes her foot in his latex glove. Then he drops his hand. ‘I’d rathernot do this…what if I damage something, a tendon, a nerve? I would not forgivemyself if she could not walk because of this.’

Slowly I turn to him. For the �irst time we do not look away but stare into each other’seyes. The man who holds the key to the health of the sweetest and most delicateperson in my life, who can read and explain her blood, now tells us what we darednot imagine: the possibility that Charlotte might one day walk.

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* * * * *

‘The spot on her back has disappeared,’ says Robbert. We are about to bathe her.

Curious, I trace the tips of my �ingers along her back. The blue place that the

midwife noticed when she was born has vanished.

‘This is really signi�icant,’ Robbert says. ‘It was the �irst 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.’

Pia and Charlotte today. She is now 17 years old. Photograph: Annaleen Louwes

Like me, he seems to �ind it hard to believe. ‘For good?’

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2.1kshares

Share or comment on this article

‘In my profession this is as close as I can give you to certainty. With adults, if after

�ive 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.

This is an abridged extract from Saving Charlotte – A Mother and the Power ofIntuition by Pia de Jong, to be published by WW Norton & Co on 21 August, price£12.99. To pre-order a copy for £11.04 until 20 August, visit you-bookshop.co.uk orcall 0844 571 0640; p&p is free on orders over £15

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I cannot believe thatCharlotte has healed, thatall is well and that one dayshe will walk on thosedelicate feet

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Comments 688Share what you think

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Click to rate

Kaia, London, United Kingdom, 4 hours ago

Glad you said No to chemo. It's a killer. May your daughter lead a long & productive life. Xx

ReplyNew Comment 11

Click to rate

Allison, Oxford, United Kingdom, 10 hours ago

@Jayley: "To paint doctors as blood thirsty as Charlie's parents have is extremely dangerous forsociety." Except that they didn't, haven't, most likely, probably even, wouldn't. End of.

ReplyNew Comment 30

Click to rate

Upstate, SC, 15 hours ago

While this is a nice story, it isn't the reality for most people. I think it's irresponsible to promote thislike it is the new frontier on cancer treatment. Desperate parents could see this and refuse lifesaving treatment for their children, causing them unknown suffering, because "this woman on theInternet...". This would be the exception, not the rule.

ReplyNew Comment 810

Click to rate

Jayley, Boston, United States, 14 hours ago

I agree in the sense that it's fuel for parents who don't believe in medicine and thinkprayer is the answer, but the writer makes it very clear that her child had a very rare formof leukemia to the point where the doctor admitted he didn't know what the best course ofaction would be because chemo would have caused suffering and possibly death. Ifstories like Charlie's are plastered all over the media then ones like this one should betoo. A big problem nowadays is a lot of people can't think for themselves and blindlyfollow what they read in the media. It's those peoples mindsets that need to change, notthe stories that are posted.

08

Click to rate

Kaia, London, United Kingdom, 4 hours ago

Chemo'therapy'? This is the ONLY treatment offered by our western medicine, thatradio'therapy'. Both toxic. She took her daughter out in the sunshine, as you can see fromphotos. Vitamin D deficiency is responsible for some 90% of cancers, that and sugarconsumption.

10

Click to rate

DottieL, Santa Maria, United States, 16 hours ago

wonderful article, and so happy for this family.


Click to rate

Jayley, Boston, United States, 16 hours ago

The headline of this story made me think it was going to veer off in a completely different direction.I'm glad it didn't. To paint doctors as blood thirsty as Charlie's parents have is extremely dangerousfor society. Parents with sick children often cannot think rationally because their first instinct is tofight for their child's life, even when it has been proven there is no hope of recovery or treatmentmay cause suffering. It is made even worse if the parents have victim complexes. It is refreshing tosee a story where doctors are painted in an honest humanistic way and the Mom decided she didnot want to put her child through painful treatment that could have maimed her. I am very happy atthe outcome for Charlotte! Best of luck to this young lady!


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The views expressed in the contents above are those of our users and do not necessarily reflect the views ofMailOnline.

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Allison, Oxford, United Kingdom, 10 hours ago

Except that they didn't, haven't, and, most likely, probably even, wouldn't. End of.

10

Click to rate

Kate908, New Jersey, United States, 17 hours ago

You wrote in the article summary on the home page that this family is from Princeton, NJ, yet theauthor writes that the 8 year old boy in America was in "another continent," so where was thisfamily living throughout all of this? Does anyone know? I'm just curious because it isn't made clear.


Click to rate

rayme, manchester, United Kingdom, 17 hours ago

A truly wonderful story. It shows beyond all doubt that you should never lose hope and that thetreatment can often be responsible for death of a tiny baby. I salute you madam and good luck toboth you and your daughter.


Click to rate

simply irresistible, Amanda, United States, 17 hours ago

Wow dm what a great story. Amazing miracle!


Click to rate

mavbebe, Copenhagen, Denmark, 17 hours ago

Maternal instinct took over. Just the way it does in the animal kingdom. Great story


Click to rate

aSwe, Texas, United States, 17 hours ago

The medicine would have killed her.


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including MarissaJade sun themselves inTINY bikinis... and PaulDanan can't believe hiseyes

Yazmin Oukhellouexudes confidence in achic LBD for TOWIEfilming in Marbella... asshe steps out for thefirst time since getting anose job

ABSolutely ripped!Bethenny Frankel, 46,flashes her toned midriffin tiny bikini forroadside selfieShe has a body of a

woman half her age

'Looks like he's hidinga frog in his mouth':SpiderMan star TomHolland responds tomeme about his redcarpet facialexpressions

Just like Neverland!Paris Jackson gets intouch with her innerchild at Disneyland...but still makes time fora cigarette breakMagical day

'We miss you!' MileyCyrus writes sweetInstagram note to herbeau Liam Hemsworthwho's away filming asshe snuggles their petpooch

Victoria Beckhamrocks Alist chic as shesports sunglasses forlate family dinner withhusband David and sonBrooklyn

Meow! Kesha rocksrainbow coloredsweater with wild catgraphic as she holdshands with herboyfriend at LAXEclectic outfit

Did an excited child onRed Bull make thisHollywood history?Christopher Stevensreviews last weekend'sTV

The world's friendliestexes? The Expendables'Dolph Lundgren showsoff his muscularphysique as he holidayswith bikiniclad exwifeAnette Qviberg anddaughter Ida in Marbella

What a peach! RachelMcAdams is casual chicas she roams throughfarmer's market pickingout fresh fruitLow profile lifestyle

It's over! Aaron Carter'splits' with girlfriendMadison Parker one dayafter revealing he issexually attracted toboth men and women Share

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stay with me, i whispered': when her daughter was …...robert pattinson get close during dimly...

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