‘Abortion is an emotive issue – I still feel the pain 17 years later’
For Sarah Rodrigues, the recent situation in America has resurrected memories of a heart-breaking decision she had to make
She was brought back to us wrapped in a blanket – it’s the only thing I still have that touched her
There is recognition of the grief but not the layers of complexity added by guilt and shame
The sonographer had tolerated, and even participated in, our banter (“If only the scan could show us whether the baby will have my hair … I really hope it doesn’t get saddled with yours…”). It was the ribbing of a recently married couple, giddy with excitement at seeing their first child, now a 20-week-old foetus, looking unmistakably like a baby on the screen.
The shift in atmosphere, when it came, was palpable. The sonographer’s brow creased as she took measurements. She stopped talking to us. Stopped explaining the black and white images in front of us. I felt chastised, as if our levity was disrespectful in this clinical setting; as if we’d rudely compromised her concentration. I shot my husband a meaningful look and we fell silent.
The machine was abruptly switched off. And then: “I have some concerns about your baby.”
According to the website of ARC – Antenatal Results and Choices (arc-uk. org), which supports parents through the discovery of a suspected or diagnosed foetal anomaly, more than 20,000 expectant parents a year are told that their baby may have a genetic or structural condition. Some of these conditions are better known than others – screening for T21 (Down’s Syndrome), T18 (Edwards’ Syndrome) and T13 (Patau’s Syndrome) is routinely offered by the NHS between 10 to 14 weeks of pregnancy, with further tests offered if the risk is shown to be high.
I knew of these conditions. I knew, also about miscarriage – the fear of losing a baby is what stops people from announcing their pregnancies before that “magical” 12-week mark, isn’t it? This pregnancy had been planned, but a surprise nonetheless: with me conscious of being in my 30s, and our wedding approaching, it had seemed daft to “wait” when it was probably going to take an age to conceive anyway.
So when I lifted a cup of coffee (my lifeblood) to my mouth the next month and retched, it wasn’t long before we were staring, goggle-eyed, at a double line on a stick. Quick calculations showed that I’d be 13 weeks by our wedding day – a double celebration. So confident were we of this milestone being our Golden Ticket into parenthood, that we announced the news of our impending arrival during our wedding speeches. Having recently had my 32nd birthday, I felt like I’d won the trifecta: the loveliest of husbands; a baby on the way and, incredibly, I’d fallen pregnant easily at an age that, to my mind, was on the cusp of “old”.
What do you expect at your 20-week scan, beyond discussing whether to find out the gender or not? Certainly not abrupt silence; nor a blank screen. Not the sickening twist of fear in your stomach, nor clammy hands. Not the postbox mouth of a sonographer, calling for a specialist, who arrived, looked at our baby and immediately suggested further testing by way of amniocentesis, a procedure involving drawing amniotic fluid from the womb and testing it for chromosomal anomalies. It comes with a significant (one in 100) risk of miscarriage. With all the riskavoidance – soft cheese, alcohol, smoking, sushi – that surrounds pregnancy, why would a medical professional advise such a test without significant concerns about the health of the baby?
Over the next few hours, the expert talked us through the litany of issues visible on the scan before performing the amnio. Our little girl – as we then discovered she was – was growing without a jawbone. There was a hole in her heart. Her scapulae had not properly formed, nor had her femurs, while each tibia had a sharp 45-degree bend in it. No matter what the outcome of the amniocentesis, our little girl would never breathe or walk unassisted.
The walk across the hospital car park back to our car was one of the longest
I’ve ever known – like wading through cement. Just hours ago, I’d been excitedly waiting for my husband to come home so that we could go to our appointment. Now, the two of us, and our precious bump, were immured in blank terror and silence.
The amnio results were delivered the following day. Three sets of our daughter’s chromosomes had snapped in two, with the broken bits attaching themselves to other sets. This was in addition to the skeletal issues – identified, now, as campomelic dysplasia – and the hole in her heart. Her issues were, we were told, incompatible with life: if she did not die in utero, she would likely die in the rigorous process of childbirth.
There was a private room available the following day. Did we want to proceed with the pregnancy, or have a medical termination?
As women, we hear a great deal about choice. We are told that we can – and should, if we want to – say no. Birth control gives us the right to choose to have sex without the consequence of pregnancy. Termination gives us the right to choose to end an unwanted pregnancy.
But we are not told about choosing to end a wanted pregnancy. We’re not told about the choice – if it can even be called a choice – between having a procedure that will end your child’s life, or knowing that your child will die anyway. The narrative around pregnancy is very much that wanted babies are either carried to full term, or tragically miscarried; only unwanted babies are terminated.
As a first-time mother, I had been greedily devouring information about how the foetus develops. Knowing that babies can hear from about 18 weeks of development made me imagine my baby becoming increasingly sentient as the pregnancy progressed. Horrific enough that she would die when I gave birth to her, but would she feel pain? Would she hear me crying, as well as whatever sounds I might make when I was in labour?
There are no words to describe the feeling of walking into a hospital, pregnant, and knowing that you will then be leaving with empty arms and a broken heart.
Drugs were administered to induce labour, which was long and painful. When our baby was delivered, she was swiftly taken away, and brought back to us swaddled in a tiny patchwork blanket. It is the only thing I have that ever touched her. Now, it is wrapped around a book containing her photos, handprints, and footprints, as well as the plate from her coffin, inscribed with her full name.
In my hectic home, now filled with my three noisy teenagers – aged 15, 14 and 13 – and their friends, it’s sometimes difficult to comprehend the crippling loneliness of the grief and guilt that consumed me 17 years ago. So rare was the severity of our baby’s condition that the hospital called us in for DNA testing, to assess the likelihood of subsequent pregnancies being affected. The wait for those results was interminable. My milk came in, an experience both physically painful and emotionally brutal. My family offered no comfort. My friends didn’t know what to say. For months, I rarely left the house, because it seemed that all I saw were pregnant women, proudly flaunting their bumps.
The grief has mellowed over the years. I live alongside it, although I still mark her due date and birthdate, and there’s a flicker of “what if ”? that comes when I meet girls born in 2005. Fear surrounded my subsequent pregnancies, with additional testing and scans required for each, and my eldest son showing a one in five chance of chromosomal abnormality at his nuchal translucency scan (anything greater than one in 100 is considered high risk). I wanted to be the glowing, excited, expectant mother, but every time somebody congratulated me on a pregnancy I felt both terrified and guilty; somehow disloyal to my first born.
Even now, the guilt is a constant dark patch festering in the corner. What if the prognosis was wrong? What if it was that boozy night out before I knew I was pregnant? What if she could have lived? What if, on some subliminal, shameful level, my perfectionist tendencies simply rejected the idea of an imperfect baby? If, as the common wisdom goes, most miscarriages are the result of there being something “wrong” with the baby, then why was mine hanging in there at 20 weeks? What if she wanted to live? What if it was me, and not her condition, who had denied her that choice?
Termination of a pregnancy is an emotive enough issue in itself – a quick glance at the current move to s overturn 1973’s landmark Roe vs Wade case is proof enough of that. How much more is at stake when the child in question is not a mistake, or an accident, or untimely – but desperately wanted? How much more deeply do such decisions cut when you’re already imagining holding them in your arms, pushing them on the swings, singing them to sleep?
In the UK alone, around 5,000 pregnancies a year are terminated after a foetal anomaly scan, yet it’s still not something widely acknowledged. It is therefore almost impossible to speak about and so a taboo remains, with people like me – even now, even 17 years after giving birth to my daughter – resorting to saying that their child was “lost”, or “stillborn”. There is recognition
of the grief, but not of the multiple layers of complexity added by guilt and shame.
Not of the silent apology I make to my daughter every time people ask how many children I have.
And not of the fact that, no matter how many people are at my house for dinner, there is always an empty place at my table.