My husband and I are a fighty couple. We disagree on a lot. But he is the carrier of a chromosomal disorder that makes it more likely we will conceive a child with Down’s syndrome, and when we started trying for a baby in 2015, we were unanimous on the fact that if the foetus was diagnosed with the condition, we would terminate the pregnancy.
We never had to make that excruciating decision because we ended up needing IVF, which allowed us to screen our embryos. I still did the NHS Down’s syndrome test when I was pregnant, just in case. My results were “low risk”, but in 2020, 3,083 terminations were carried out due to a substantial risk that the child may be seriously handicapped (also known as terminations for medical reasons, or TFMR), according to Department of Health figures, with 229 of those after 24 weeks’ gestation – the point at which terminations can no longer be carried out under UK law, except in extenuating circumstances.
Today, a case is being heard before the High Court that seeks to change the law to prevent women from terminating their pregnancies after 24 weeks for all non-fatal disabilities. The case is focused on Down’s Syndrome: it is being brought by Heidi Carter, a woman with Down’s syndrome, and Máire Lea-Wilson, whose toddler has the disorder. Carter calls the law as it stands, which allows terminations after 24 weeks for babies with serious physical or mental abnormalities, “downright discrimination”.
Coverage of the case has centred on the experiences of Carter and Lea-Wilson, who says her son Aidan “is the funniest little boy ever”. Their argument, that the current law dehumanises people with disabilities, is completely understandable. But, in all the coverage surrounding this highly sensitive issue, the mental state of those making the agonising choice to have a late-term termination has barely been mentioned.
In reality, this case isn’t about people who have Down’s syndrome, says Jane Fisher, the director of Antenatal Results and Choices (ARC), a charity that supports people through antenatal testing and its repercussions. “It’s about the bigger picture, and what it will mean for women and their clinical teams.” Very little attention has been paid to what changing the law would mean for parents – especially mothers – who find themselves in an unimaginably painful situation.
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Let’s be clear: no one who has a termination after 24 weeks has made that choice lightly. Often, it is because they have received an antenatal test result at 12 or 20 weeks and then had further testing, which pushes them over the 24-week mark. Sometimes people simply receive the diagnosis late in the pregnancy. Either way, it is a crushing decision to have to make.
As co-host of the infertility podcast Big Fat Negative, I have become part of a community of women who have been faced with this choice. They have agonised and grieved. They have wept and pleaded and bargained not to be in this position. “To suggest that people snap their fingers and say ‘oh, my baby’s not perfect’ is just such an insult,” says Fisher.
Women who decide to have terminations make this most horrific of choices for a multitude of reasons: because they have other caring responsibilities, because they are in a relationship they think could not withstand having the child, because they are in a precarious financial position and caring for a very disabled person is either extremely expensive or a full-time job – or because they just don’t feel able to advocate for a child with profound disabilities.
“It is not something anyone takes lightly,” says Hayley Manning, the co-host of Time to Talk TFMR, a podcast supporting women through the process. “The grief is real and it lasts a lifetime. Those babies are so loved and never forgotten.” The important part is that the law as it stands means it is the parent or parents’ choice to make.
In truth, my speculative decision wasn’t difficult. My brother – my silly, funny, generous, annoying little brother – has a severe learning disability and I have watched him navigate a world that views him as an inconvenience.
Making sure he is given the right education; ensuring his living standards are good enough; convincing a reluctant council faced with cuts that he needs round-the-clock care – those demands have required endless meetings with social workers, council workers, lawyers, letters to MPs.
My parents have devoted their lives to advocating for him in a system that rarely hears disabled people’s voices. When they’re gone, it’ll be up to me and my sister to continue. When we’re gone, who will make sure he gets to go to the Bath Festival, or has ingredients to bake a cake each week, or gets the latest Now! album? The worry keeps me up at night. I couldn’t go through that with another person.
This case is another attempt to weigh the rights of living women against the rights of the unborn. If it’s successful, it will chip away at women’s control over their bodies and their futures. The women who choose to terminate their pregnancy after 24 weeks already face a lifetime of anguish, grief and guilt. Let’s not criminalise them as well.
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