The most agonising decision a mother could ever make: In her own brave and deeply moving words, one woman’s account of letting her longed-for baby slip away after he was born profoundly disabled
- Georgina Lucas, who lives in London, went into early labour in November 2019
- She and Mike had to decided whether or not to withdraw baby Grey’s life support
- Scan revealed he was missing a crucial ‘nerve tract’ and had other abnormalities
A premature birth is often followed by weeks of hospital care and desperate anxiety for new parents.
Yet few of us can imagine the extraordinary pain endured by Georgina Lucas and her husband Mike, whose baby was born not only early but with such profound neurological problems, they were forced to decide whether or not to withdraw his life support at just three weeks old.
It was in late November 2019 that a heavily pregnant Georgina went on a weekend break to the Kent coast from the London home she shares with Mike, the director of an advertising agency, and their 18-month-old son Finn. That Saturday, while still on holiday, she went into early labour and baby Grey was born by caesarean section, at 31 weeks, weighing three and a half pounds.
He was taken to the neonatal intensive care unit (NICU) of a local hospital and put on a ventilator. But less than two weeks later, a scan revealed he was missing a ‘nerve tract’ which connects the two halves of the brain together, among other serious abnormalities.
Georgina Lucas recounts having to decide with her husband Mike, whether or not to withdraw baby Grey’s life support after he was born with serious abnormalities. Pictured: Georgina with husband Mike, toddler Finn and baby Grey
It meant he would never be able to breathe without mechanical help, and that speech would be difficult or impossible. He was unlikely ever to see and his hearing would be severely limited.
The prognosis was devastating and left Georgina and Mike with a decision no parent should ever have to take. Should they try to keep Grey alive? Or should they let him die?
Here, Georgina details the agonising meeting with doctors that followed — and how the depth of their love for their baby boy helped them make that difficult decision..
December 5, 2019
Mike and I are in the quiet room attached to the NICU with Dr Chandra and Dr Stewart, the specialist doctors who look after the babies. I think I know where this conversation is going to end. The sense of inevitability hangs heavy in the air.
But where does it begin? How do you begin to discuss removing life support from your three-week-old baby?
We go over the possibilities, if Grey were ever to leave the hospital and go home. It’s a very, very big if.
He’d need a team of nurses — Dr Chandra mentions eight — round the clock, just to be able to breathe. We’d do it, of course we’d do it, somehow, if there were to be any hope of him experiencing any pleasure at any point in the future. But, given his diagnosis, it is unlikely he’d even be able to tell us if he were in pain.
It’s agony. My body aches. I feel sick and hopeless and guilty and then sick all over again. Our baby. Our darling, darling baby.
Georgina (pictured, with Mike) said baby Grey’s abnormalities meant he would never be able to breathe without mechanical help and was unlikely ever to see
‘You don’t need to decide now. And even if you do decide now, you can change your mind,’ says Dr Stewart. ‘You can take as much time as you need.’
But we do need to decide. I know Mike and I both feel it. It has been six days since the results of Grey’s MRI scan smashed our world into tiny razor-sharp shards, and all I really want to do is lie in a dark room and cry. But we have to find some steel within ourselves. If you can’t breathe, can’t see things, can’t communicate, can’t hear, can’t move, is that really a life?
‘A huge part of me wants to keep him in that incubator, where he’s safe, with all of you, with us,’ I say. ‘But he can’t stay there for ever, can he?’
I glance at Mike. In my heart I know there is only one thing to do. All the other options bring pain to Grey — immeasurable pain.
‘What would happen?’ I ask. ‘How does it work?’
Dr Stewart takes a breath. ‘When you are ready, we would gently take out his breathing tube. We call it a compassionate extubation.’
She pauses. ‘You would need to be prepared that some babies breathe for a little while on their own — that might be minutes, might be hours. In some cases, it’s longer. I think, with Grey, it would be quick.’
She stops. I digest what she’s saying. ‘You can stay with him, as long as you want. We have a suite where you can spend the night with him, you can spend a week with him. We have cold cots [cots kept at a cooler temperature to allow a baby to stay with their parents for longer] that we can put him in. It is all up to you.’
Grey is three weeks old. I should be deciding how often to feed him, whether he needs a bath. Deciding whether his crying is wind or a dirty nappy, not if we’ll need a cold cot for his tiny, lifeless body. ‘You let us know when you would like to do this. There is no rush, no timeline. This is your decision. We are here to support you.’
I nod. Mike is nodding, too. This is the decision we are left with: when should we let our baby die?
Georgina remembers Grey being moved into the isolation room, which felt quiet after the buzz of the ICU. Pictured: The family in the hospital while baby Grey sleeps in an incubator in the neonatal intensive care unit
We arrive at the hospital a little after 6.30am. Grey is moved into the isolation room, where the window looks out on to a small concrete courtyard towards a staff room, where a nurse scrolls through her phone, drinking a cup of tea. Taking her morning break on a day like any other. This is the nature of life-changing tragedy, I realise. It occurs quietly, almost unnoticed, alongside the mundane.
The space feels quiet after the buzz of the ICU. I tuck one of Finny’s toy rabbits in beside Grey, and put an embroidered cushion on the chair. I pull out a pack of photos and peg some of them up in the window.
Today is the day we have chosen. Everything seems to be in the sharpest focus, vibrant Technicolor. Every action feels momentous. Am I consciously drawing each second into my memory? Or is my mind doing it automatically?
One of the nurses, Nena, brings baby wash, a big sterile bowl and tons of cotton wool. Grey’s hair is a little fusty, so we’re going to give him an incubator bath. He wriggles around as I sweep warm, damp cotton wool over his head and lather his soft curls.
He flares his nose. Carefully, methodically, I wash every little part of him.
His skin puckers and wrinkles over his arms and legs — so much spare for fat and muscle that will now never cover his bones. I gently pat him dry with a soft towel and dress him.
A long-sleeved vest and a tiny-weeny onesie, freshly laundered, ready for today. I unfasten and reattach his wires, thread them through the new clothes. He’s tucked in, snug, warm. He’s ready now. I will never be.
Georgina (pictured) whispered words to her grandparents who died before Finn was born, asking them to look after baby Grey
I have wondered at the promise within my small boy. Who he might be, what he might do. I’ve looked forward to watching the seedling of a person emerge — but that luxury has been whisked away. We must accept that we’ll never have the chance to get to know him. All we have is here and now.
We turn to the photos, to show him our favourite places — the seaside, the wild Cornish coastline, the mountains we love so much.
And then we show him the precious people I have to hope will find him, somehow. My granny, who died in April, who never could have imagined her third great-grandson would be joining her so soon. Mike’s granny, who died when I was 12 weeks’ pregnant with Finn. My grandfather, who died three months before Finn was born. I whisper words to each of them: please look after him, please give our tiny boy all the cuddles that we cannot.
Now Mike holds him, tiny Grey snuggled under his chin. He looks so peaceful, his back covered by Mike’s hand. We sit, first in silence, then talking quietly to him, telling him we love him, that we’ll miss him. That we’ll talk about him for ever, that everyone will know him. We tell him we’ll look after Finny, that Finny will miss looking after him, that we’ll all miss getting to know him, seeing how he grows.
How do you fit a lifetime of love into three weeks? And then into one day? And then a few hours? And then minutes, then seconds?
As the nurses lift Grey from his chest, Mike’s tears fall with deep, shuddering gasps. His face contorted. His body shaking. There is nothing I can do, nothing I can say. How can you lift your baby from your chest knowing you will never feel his heart beat there again? They place Grey gently upon me and I gaze down at his serene face. His eyes are closed. He knows nothing of our pain. He will never know this pain. We can give him that.
Georgina (pictured, with husband Mike) said Grey’s face twisted as the tiny plastic tube sucked the build-up of mucus from his chest
A soft knock and Dr Chandra is in the room. She wears a printed shirt and jeans tucked into her boots. She isn’t on duty.
‘I wanted to come to see Grey, to see you,’ she says. She gazes down at his little face. ‘Oh Grey . . .’ she whispers. Mike puts an arm around her. I can see she is fighting to stop her tears. She doesn’t need to. I want to tell her, you can cry, it’s OK.
Not long after she leaves, the quiet is broken by the alarm on the monitor over my head. Glancing up, I see Grey’s oxygen saturation is dropping. Nurses return to the room in seconds; one suctions the secretions from his chest, one monitors his levels. His face twists as the tiny plastic tube sucks the build-up of mucus from his chest. Gradually, his numbers come back up. But then minutes later they are down again.
I think he is telling us he’s ready. He hates the suction — we have to listen to him; we have to let him go. ‘No more, my darling,’ I whisper to him. ‘No more of that. I know it’s horrible, we aren’t going to do it again. Soon you will be free from all of this.’
It’s time. When the numbers fall once more, the nurses gently unplug all the alerts. There will be no more alarms. Nena calls Dr Stewart, who kneels low, by Grey’s face, in line with mine. ‘Are you sure?’ she says. I nod. One slow, smooth movement and the breathing tube is pulled carefully from his mouth. The medical staff leave the room.
The sun is shining against the silver frame of the window opposite. It’s the first time I can see Grey’s face without wires and tubes. His little chest is still rising and falling, his hand is curled around my finger.
I see his perfect lips, free of the ventilator, for the first time since a momentary glimpse when he was born. They pucker in a little bow as he takes tiny breaths.
Georgina (pictured) remembers holding Grey against her shoulder and walking around the room, a little bounce in her step as if soothing him to sleep
‘It’s OK,’ I whisper. ‘It’s OK.’
Grey’s fingers begin to go limp, gently releasing mine. The gaps between his breaths have begun to slow. My baby is dying. Suddenly, it is quiet. We listen to the silence. I can’t cry. Nena comes in to check his heartbeat. It’s faint, but there. ‘Is he in pain?’ I ask. ‘He can’t be in pain.’
‘He is peaceful,’ she says. ‘See his face. But let’s give him a little sedative. It will make sure he feels nothing.’ She slips it into his mouth and then leaves. Each break between gasps, the world seems to stop. We hold our breath, too. The gaps stretch longer, longer and longer.
I hold Grey against my shoulder and walk around the room, a little bounce in my step, as if soothing him to sleep. I stroke his little cheeks, then press my finger to his brand-new rosebud mouth.
Dark curls poke out from under his hat and his hand rests against my chest. When Finn was tiny, I would press him to my chest exactly like this, and wish I could keep him like that for ever, wish I could preserve his perfect innocence, protect him from all the bad things. In some ways, this is the one thing we can do for Grey. All he has ever known is pure love, for his whole life. Nothing but love.
Time passes. There is silence. I can no longer feel even the faintest murmur of a heartbeat.
Moments later, Nena slips a stethoscope inside his babygrow. She listens, and listens, and listens. Then she bows her head and shakes it gently. ‘Grey doesn’t have a heartbeat.’
He has slipped away as quietly as he arrived. Free.
I feel a strange calm; it’s both soothing and unsettling. I don’t know how long we sit like this. Time is no longer measured by normal patterns. Its rhythm is forever disturbed. Three weeks was never a lifetime.
A wise friend told my mum when her dad died that grief is the price we pay for love. I have never forgotten it. But now I see it a little differently. Grief doesn’t come after love. Grief is love. The very deepest love. It’s love in a guise I’d never have chosen, love I will carry with me for all of my life.
Adapted from If Not For You by Georgina Lucas, published by Little, Brown on January 27 at £16.99. © Georgina Lucas 2021. To order a copy for £15.29 (offer valid to January 27, 2022; UK P&P free on offers over £20), visit mailshop.co.uk/books or call 020 3176 2937.
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