When author Francesca Segal’s identical twin girls were born 10 weeks prematurely her dreams of perfect parenthood collapsed.
Instead of bonding as a family at home in London, she and husband Gabe, 40, took up residence in neonatal intensive care for 56 days.
Here, in an extract from her new book, Mother Ship, the 38-year-old describes her love, anguish and hope after the now-three-year-old Celeste and Raffaella entered the world…
Thursday, 1st October
Day Minus One
Identical girls felt like a lottery win. For the first time in my life I was part of a posse; I was a one-woman girl gang.
Two tiny sidekicks always there. Together we sought out the sunniest desks in the library and there spent long afternoons, some
of us reading, others napping. We shared a new and urgent interest in anchovies, and cottage cheese.
At my fortnightly visits to the hospital the sonographers would tut a bit, fussing that both babies were measuring small, but before my eyes they wheeled and flipped with great energy, and they were growing, steadily.
Everything was as it should be. Despite being over the age of 35 and carrying twins, my pregnancy was plain sailing.
And so it was with shock that I sat up in bed one morning, 29 weeks and six days’ pregnant, to discover that I’d begun to leak blood.
Most of the next 36 hours were dull. At the Central Hospital I was put on an antenatal ward… in a room of women, variously crying.
I was not crying, because, unlike them, I was not in the throes of having a baby. I had 10 more weeks, a full quarter of a pregnancy ahead.
On my last scan Baby A had measured somewhere around two pounds, Baby B was smaller. The weight of four packets of butter, or a few apples. Less than a bag of sugar.
They couldn’t come now, I remember thinking, and so they wouldn’t. I was very calm.
Around midnight I shambled to the loo. Suddenly it came again, and this time within seconds much of the floor was slick with blood.
It now seems impossible but, even then, I was still convinced it would all turn out all right.
Though I hadn’t known it, at midnight, my daughters had passed across a magical threshold, from 29 weeks to 30, at which statistics change, outcomes improve.
Two-pound babies have uncertain futures. Respiratory distress syn-drome from immature lungs. Irreversible lung damage from ventilator support.
Pneumonia. Brain bleeds. Cerebral palsy. Anaemia. Retinopathy of prematurity, which can cause partial or total blindness. Sepsis . Necrotising enterocolitis – life-threatening bowel death.
I knew none of these words then but I understood that if we could buy my daughters another week, another two, another five, their prognosis would be materially different.
But I had run out of chances.
The theatre was busy and so we had maybe half an hour to come to terms with what was now happening, to me, to Gabe, to Babies A and B.
We used most of it to take photos of Gabe in his hospital scrubs and to giggle like overtired schoolchildren, fuddled by a narcotic combination of ignorance and spectacular denial.
Then a new doctor appeared in the doorway, a registrar on the neonatal intensive care unit. “I wanted to explain what will happen to your daughters after the caesarean”.
Our giggles subsided. It was some time, after that, before we laughed again.
I didn’t meet my daughters the day they were born.
After surgery I lay in the recovery bay in the honeyed fog of diamorphine until I was wheeled to a single room.
How grateful I was to be shielded from the jolly chaos and high feeling of the adjacent ward, with its bawling and balloons, where other women who had recently given birth had babies beside them: huge, tight-swaddled, hard-won trophies shown off to troops of admiring visitors, their birth stories behind them.
I began, for the first time, to cry. Taking my unready daughters from within me felt not like a birth but an evisceration. They were elsewhere and in need of me, and needing more than I could give them.
Though it is 4am I feel clear as a bell, able to stand, to walk. Last night I was drugged; this morning I am electrified. Somewhere in this hospital are my daughters.
The neonatal intensive care unit has wards of four beds, and a minimum of two nurses at all times, two babies assigned to each nurse.
The soundtrack is a combination of control tower, server room and a busy canteen, as orders are called out, and a thousand toaster ovens ping, over and over. It is dark but for the banks of monitors, displaying incomprehensible data. It could be the cockpit of a spaceship.
The babies in this room, Room One, are not well babies: one or other of their alarms go off somewhere in the region of once a minute, sometimes continuously.
Beeping of any sort will set me on edge for a long time: at home I will develop a habit of standing vigil by the microwave to stop it just before it finishes.
These two on the left, side by side in two incubators, these two, says the doctor, they are my daughters.
The room is in shadows, and each lies in a pool of sapphire light, for jaundice. A is doll-sized; B is smaller still.
Their skin is too fragile for clothes. They have been positioned on their stomachs, curled in deep oval nests of rolled towels and rough hospital sheets printed with faded clowns beneath A, faded teddy bears beneath B.
They are both wearing white cloth hats, white Velcro sunglasses, and their noses and mouths are obscured by a mask delivering Continuous Positive Airway Pressure, CPAP, to force their stiff, unready lungs to breathe.
A feeding tube disappears between their lips and down their throats. Their faces remain a secret known only to each other.
They have no fingernails, no toenails, and later, when they lose the Audrey Hepburn shades, I will see they have no brows or lashes.
I press my face to the glass. I see red starfish hands and fleshless arms, bone-shaped. I can trace their circulation, the fine leaf-veining of tributaries clearly visible beneath their backs’ translucent skin.
They are the furthest from me, and the furthest from one another that they have ever been. I do not recognise them. They are otherworldly in their strangeness.
They are half-beings in the half-light and in an instant my heart shatters, and I become half a mother, twice.
Twin One is sleeping after a troubled, unstable night. She is manifestly not enjoying what she’s seen of the world so far. Breathing is tiring. She cannot settle and overnight was wasting precious energy, awake and in distress.
The consultant rattles open the portholes of her incubator to check her colour, palpate her abdomen. His hands are obscenely large around her; her limbs smaller than his thick fingers.
The baby does not appreciate the examination and protests by sounding every alarm at her disposal – her heart is racing; her oxygen levels plummet. The nurse reaches up to silence the bells.
Someone continues with her list of medications. I’m fairly sure I heard something that sounded like caffeine but surely could not have been. She’s pink, which is good, even though she’s also yellow, which is bad.
A something in her brain is dilated but we are not to worry, or at least not until a repeat neurological ultrasound tomorrow when we will be told whether we ought, in fact, to worry a great deal.
The group makes their way from Cot 1 to Cot 2. Gabe and I take up identical sentry posts, beside our other daughter. It feels faintly comical, like an episode of Fawlty Towers in which the concierge becomes a waiter by stepping two feet to the left and changing hats.
I gather that Twin Two – Baby B, to use our own more intimate nickname for her – is being flooded with antibiotics to fight suspected sepsis but that on the upside she is now having a single millilitre of breast milk an hour.
Sepsis sounds extremely not great. But I understand so little that I cannot even formulate a question beyond, “Are they going to be OK?”.
Without continuous medical intervention my two-pound children cannot regulate their body temperatures, nor take in calories, nor can they breathe.
So when I go home tomorrow they will not, I am told, be coming.
I am nominally the mother of two children but I have not held a baby, nor changed a nappy nor, beneath their hats and masks and white felt goggles, have I seen my daughters’ eyes or noses or heads. I do not know if they have hair, nor what colour it might be if they do.
The road ahead of them is a long one and reliably unpredictable.
So we have only averages to go on, and the roiling poisonous vat of Google search results. Chance of cognitive impairment, of physical impairment, of survival.
Parents whose infants are well enough to be held (for what is universally known as “Cuddle Time”) must change into clean hospital gowns, worn backwards so they open at the front to permit skin-to-skin contact.
Now Baby A, or A-lette, to use her new diminutive, has been stable for a few hours. Her nurse, Raakhi, asks, would I like to hold her?
I part the folds of my hospital gown: it is like offering up my heart for sacrifice. Tears are sliding silently down my temples and into my ears.
And then there is a hot frog on my chest, a handful of human, and Raakhi is expertly folding up her legs, arranging my hand in a firm cup beneath her bent knees.
Premature babies crave enclosure, the womb’s approximation, now they can no longer have the womb. Space to flail distresses them: in the right way on my chest, Raakhi tells me, I can contain her better than her nest of towels.
We check the monitors anxiously but so far her oxygen and heart rate remain stable. I am holding one of my daughters.
But in this position I can’t see her and I ache to study the new person tucked beneath my chin.
She is a person I have longed to know. I cannot move, nor can I lower her into my arms, for these babies cannot be held like babies. “I can’t see her face”, I whisper to Gabe, over and over. “I can’t see her face”.
I stare at the wall, at the blinking monitors, at the empty incubator, and try to imagine her.
I see Sophie, one of the other mothers, confer with her husband, Evan.
He passes something to Gabe and then he is gone. Gabe closes my fingers around a handle and I realise what Sophie has given me is a mirror. If I raise it I can see my daughter’s face.
“Oh, Mummy. I’m glad you’re here.”
It is Perlah, a nurse I love.
“Twin One – your A-lette – has not been very happy. Oh, Mummy,” she says again, and the pity in her eyes stops my breath. “It is so good you are here.”
Things began to go wrong at 5am. Everything points to the same thing: Necrotising enterocolitis. The doctors believe that part of A-lette’s bowel is dying.
I want to curl around her like a force field; I want to shield her with my body as if from an earthquake.
I want to snatch her up and retreat to the back of a cave like an animal.
But when her need is greatest, I am not allowed to hold her.
I lay my arm across the bottom of her nest so that the raw pink soles of her feet rest against the inside of my wrist.
This is the most contact she can tolerate, and the least that I can stand. In babies under 1500g, like ours, Necrotising enterocolitis has a survival rate below 50%.
Later, after A-lette’s ultrasound, it’s not NEC. Another reprieve. Another stroke of luck.
I do not, not for one moment, take it for granted.
It’s night-time on the ward, when we come back. I hadn’t expected A-lette to be well enough to hold for days. Far from settling, she is frantic.
Her head lurches from side to side, her mouth is working, her cries redoubled. It is as if the hunger has awoken her instincts. She knows what I am for now.
The stiff, angry baby latches on and softens, melting into my arms.
She is so small that my two hands touch as I hold her. I cannot take my eyes from the miracle that she is.
Extracted from Mother Ship by Francesca Segal, published by Chatto & Windus at £14.99. © Francesca Segal
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