Abortion or a baby born with disability: What choice would you make?
I saw my son”s bleak future and knew I had to abort him
1:40 AM on 19th May 2011
It’s the news every mother-to-be dreads: that their baby faces a life of terrible disability. But would YOU make the same choice as Sara
Feeling my unborn son move inside me should have been a joyous moment midway through my pregnancy — a milestone that took me closer to welcoming my third child into the world. Instead, every tiny movement made me feel sick with guilt at what I knew I had to do.
Sitting, head in hands, at our kitchen table, I wept at the turn our lives had taken and the terrible dilemma my husband Andrew and I were suddenly facing. It was a choice no parent should ever have to make.
This should have been a straightforward pregnancy. After all, this baby was every bit as planned and wanted as our other two children, and welcoming our first son into the family would be a special joy.
Terrible choice: Sara faced having an abortion or giving birth to a son with spina bifida (posed by model)
But things were different from the start. In contrast with my previous two pregnancies, I had felt sick and weak every minute of every arduous day. It was almost as if my body had been trying to tell me something. I’d grown to love this baby, but something felt terribly wrong.
My fears were confirmed on October 1, 2006, when a routine scan changed everything. I’d held my breath as the consultant spent far longer than I knew was standard studying and measuring sections of my baby’s spine and brain.
Scan images are notoriously hard for lay-people to make sense of, but the protrusion on my son’s back was impossible to miss. As the doctor switched off the monitor and turned her chair to face me, I clenched my fists and jaw, willing her to say there was nothing to worry about.
Instead, my stomach lurched as she said: ‘I’m sorry, but your baby has spina bifida.’
She explained that this is a condition in which the spine doesn’t form properly, leaving tissue and spinal cord exposed. The anxious expression on the consultant’s face — she suddenly looked tired and old — left no doubt that this was serious. The location of the lesion, she said, meant that our son would never walk.
I had to push myself up the narrow bed where I lay, pregnant bump exposed, to catch my breath. Dizzy with shock, I held onto the sides to stop myself rolling off.
Our two-year-old daughter, Frances, oblivious to the fact that our lives had just taken a terrifying turn, repeated insistently ‘I want more Smarties’, as we tried to make sense of the doctor’s diagnosis.
I wanted to snap at her to shut up as my mind raced, conjuring up mental images of how my future as the mother of a severely disabled child might look.
I pictured him watching from the sofa, frustrated and immobile, as his sisters turned cartwheels and somersaults in the living room. I envisaged trips to the park, where he would sit on the sidelines as other children clambered over climbing frames and kicked footballs.
Consumed by a sense that this was not the way our lives had been mapped out, I wanted to shout at the doctor: ‘Stop! You’ve got this wrong!’ I thought if she looked again at the scan, she might realise she had made a simple mistake.
Instead, she turned on the monitor to show us the inescapable truth: there was something very wrong with our baby.
Andrew was too busy jiggling Frances around, in a futile effort to keep her quiet, to take my hand. But our eyes locked momentarily, wordlessly communicating our shared terror.
He took Frances to the hospital caf, so she wouldn’t see the consultant stick a needle into my uterus to perform an amniocentesis. The fluid she extracted would determine if the spina bifida was the symptom of a chromosomal problem called Edward’s Syndrome, which would be fatal. The test revealed that it was not.
Later, sitting with Frances on my lap in a tiny windowless room, the obstetrician explained that one option was to terminate the pregnancy. If, however, we decided to continue, I would be closely monitored: as the baby grew, the severity of his condition would become clearer.
I said at that stage, a termination was out of the question. I felt such strong love for this baby already and I wanted to nurture and protect him.
I had been raised in a staunchly Roman Catholic family, and my father, who died when I was 20, was fiercely anti-abortion. One of my earliest memories is of marching with him and my siblings on a pro-life rally. Dad led us to believe that abortion was evil and that an unborn child’s right to life was paramount.
As an adult, I felt a woman should have the right to terminate a pregnancy — but that was a view forged from rational thought, not personal experience. I never once imagined it was anything I would do.
I believed that choosing to keep a baby, whatever its disability, was the mark of a good mother. How fate mocks our lofty ideals.
Unwelcome truth: Sara”s scans revealed her son would be paralysed from the waist down and possibly brain-damaged
The consultant referred me to London’s specialist University College Hospital for a detailed scan which would help determine the extent of our son’s handicap.
The scan confirmed that our baby would never walk. He would be doubly incontinent and paralysed from the waist down. Water was collecting around his brain, and only time would tell if that would impair him mentally.
I tried to shake away the image I conjured in my head of a little boy, lonely and friendless, robbed of the most basic human functions. The prospect of watching a child I’d love just as much as his sisters suffer in this way made me howl. I hugged my stomach, as if I could in some way shield him from the misery that lay ahead.
It was the thought of our son’s incurable impotence that triggered my husband’s tears. ‘Oh God, what sort of life will he have’ he asked the doctors. It was, of course, a rhetorical question, and no one attempted to answer it.
My brother James has a son, Anthony, who has cerebral palsy. When we shared our dilemma with James, he told me how painful it is to watch your disabled child struggle and suffer.
Anthony, now 12, spent months in the neo-natal intensive care following his birth, and has endured several operations on his back and legs. He is still unable to walk far and needs his parents’ help to get dressed.
He is highly intelligent and, while none of us could bear the thought of life without him, his frustration at his condition is evident. Seeing his younger brother, Scott, turning somersaults on a trampoline at a family barbecue, he grew angry and used his favourite weapon — his vicious tongue — telling Scott that everyone thought he was stupid. Tears followed, from both boys.
James said that the degree of handicap our child faced could prove unbearable for all concerned, not least our son.
When my older sister, Marie, a nurse who has cared for sick children, told me I should spare us all the suffering and have a termination, I was still shocked. And angry. I felt nobody but me loved this baby.
Yet when I look back now, I am grateful for my sister’s words. They gave me permission, somehow, to consider termination.
And so it was that a week after that first scan, and against my initial instincts, I realised I couldn’t bring this child into the world, knowing the extent to which he would suffer.
Andrew and I talked long into the night, and finally agreed that ending the pregnancy was the kindest thing we could do for our son.
Yet if making that choice was hard, the physical ordeal was only just beginning. At 18 weeks pregnant, I was too far gone for a surgical termination and would have to go through a labour and delivery, under the care of midwives at our local hospital.
The first step was to take the drug Mifepristone to block progesterone, a hormone vital to pregnancy. I swallowed the pill in a side room on the labour ward — the same room where I’d given birth to our younger daughter two years previously.
Over the two days that followed, I fought the urge to put my hands on my stomach when I felt the baby move. Knowing that he was slowly dying inside me was the very definition of hell.
After two days, I returned to the same room to take a second drug to induce labour.
What followed were the worst 16 hours of my life. They passed in a morphine-induced haze, but there was no dulling what was happening.
My baby was being forced into the world long before he could survive in it, and it felt unnatural — completely at odds with my instincts as a mother. My body seemed to be doing all it could to hold onto him, and the labour went on and on.
At one point, in the grips of what felt like a panic attack, I became hysterical. Gasping for breath and screaming, I demanded that Andrew tell me why we were doing this and why it was the right thing for our son.
He calmly described the kind of life we were trying to spare him from, and that we were loving parents, doing what we felt was best.
I demanded to know: ‘If this baby was inside you, not me, would you be on this bed right now, ending his life’
‘Yes,’ he assured me. ‘I know how hard it must be, and I wish I could take your place.’
I wanted the labour to be over, but I dreaded the end. Having experienced the joy of delivering two full-term babies, I was frightened of how my son would look at 18 weeks’ gestation. At the same time, I knew I had to take the only opportunity I would ever get to hold him.
Andrew, who was by my side throughout the labour, eventually decided to give me some privacy and went for a coffee. The midwife disappeared, too, so I was entirely alone when our son was finally born, asleep, just after 9am on October 12.
Not daring to look at him, I screamed for help — and was alarmed to see the midwife recoil before reaching out to pick him up from the bed.
When Andrew came back he was distressed, and not sure he could bear to look at our son, whom we had long before decided to name George.
However, when George was returned to us, clean and dressed in crocheted clothes no bigger than those worn by our daughters’ dolls, Andrew held out his arms and cradled our tiny son just as lovingly as he had held our two daughters when they were born.
I said George had my husband’s nose, and, as we passed our son between us, tears ran down our cheeks for the child we would never see grow.
It was a struggle to get through the weeks that followed. Our family and friends helped with the children, and before long I was taking my younger daughter to playgroups and ferrying my elder to and from school.
With friends, I was honest about what had happened, but acquaintances shied away from asking what had gone wrong with the pregnancy. When I heard other mothers chatting about shopping or potty training, I wanted to scream: ‘Have you any idea what I’ve been through’
Everywhere I went, there were pregnant women and babies. I felt irrational anger and resentment that these mothers hadn’t faced the choice of whether or not to abort a disabled child.
I even envied women who had miscarried — something I’d experienced myself, with great sadness, three years previously. But at least those babies hadn’t died at their mother’s hands, and their experiences evoked straightforward sympathy, never vitriol.
With hindsight, I realise I was depressed, though I never asked for medication, focusing instead on getting pregnant again.
According to Department of Health figures for England and Wales, almost 2,000 terminations are carried out each year on the grounds that the child would be handicapped. Others, of course, opt to keep their babies.
My sanity was saved by an organisation called Antenatal Results and Choices (ARC), which advises women on worrying antenatal results during pregnancy, and supports them in whatever choice they make.
The most important lifeline ARC provided for me was the internet forum where women who have terminated a pregnancy after discovering their baby has a disability post their experiences and thoughts, and offer each other support. These women were the only people who truly understood.
Three months later, Andrew and I spent a rainy January afternoon standing at a graveside in a corner of a children’s cemetery as George’s tiny coffin was lowered into the ground.
Like so many women who terminate a pregnancy because of a disability, I felt that having another baby — though the prospect of further loss was terrifying — was the only way to heal my pain.
The early months of my fifth pregnancy felt never-ending. Gripped by anxiety, I logged onto the ARC forum to communicate with mums who had gone on to have successful pregnancies after terminations.
Finally, 16 weeks into the pregnancy, a scan confirmed that our baby was healthy and I began to relax.
In March 2008, a few days before the first anniversary of George’s due date, I gave birth to a healthy son, James, whom we named after my brother.
James’s arrival brought great joy into all our lives, but we will never forget the son we let go. A small plaque made from a cast taken of George’s hand and footprints sits on the chest of drawers at the top of our staircase, alongside family photographs.
There are parents with severely disabled children who, I’m certain, would say we made a mistake — that George’s life would have been fulfilling, and ours all the richer for having him.
Part of me believes them, but I know, faced with that decision again, I would make the same painful choice.
Only parents who have walked in our shoes can know for sure which difficult path they would take.
Antenatal Results And Choices, www.arc-uk.org or call 020 7631 0285.
Sara Carpenter is the pseudonym for a regular Daily Mail writer.