Silma and Binit had been married for two years when they found out they were expecting a “planned, unplanned” baby in December 2019. “We weren’t actively trying, but we knew we wanted to have a baby the following year,” says Silma, sitting in her garden in London. “So we were ecstatic. Really, really happy.” Everything was normal at the 12-week scan in January, and they felt ready to tell their friends, family and colleagues. Silma is a pharmacist at a busy London hospital; Binit works in finance.
Fast forward to March 2020; the day before the couple’s 20-week scan was scheduled, lockdown was announced. The local hospital they had booked in with had already been badly hit by Covid admissions, as well as staff shortages as medics were redeployed or self-isolating. “It was all a bit of a panic,” says Silma, “so I went in on my own, thinking – how naive it was of me to think this – I was there to find out if it was a boy or a girl. I didn’t even want to know, particularly. I had just always thought that’s what the 20-week scan was about.” Binit, who was not allowed to accompany Silma, was waiting outside. He is a softly spoken man who says as much about his feelings with his eyes and his silences as with his voice; he is clearly still traumatised by the memory of that wait.
Their baby, Mia, was moving too much for the sonographer to get a proper reading, but they could see enough to suspect a ventricular septal defect, or hole in the heart. As more tests were done over the coming days, more problems emerged: defects in the aorta, a potential problem with the aortic valve. Scanning for foetal anomalies is extremely advanced, and yet it can rarely deliver with absolute certainty what parents need to know: whether their baby will survive after birth, and for how long; how much surgery he or she will need, and what the success rates are.
Jane Fisher is the chief executive of Antenatal Results and Choices (ARC), which supports parents after scan findings. “Once you’ve put the probe on, you can’t unsee what you’ve seen,” she says. “You can’t unsee a brain defect – not fatal, but horrific, very, very minimal brain function.”
“Some foetal abnormalities will be not survivable,” says Dr Brenda Kelly, a consultant in obstetrics and fetomaternal medicine at Oxford University Hospitals NHS trust, “and in many respects, those are easier to work with. If you can see that the foetus has developed without kidneys, you know that’s incompatible with life. But ventriculomegaly [enlarged ventricles of the brain], what does that mean for future development?”
At least 5,000 pregnancies a year in the UK end in a termination for medical reasons (TFMR). Three pregnancy charities – ARC, Petals and Tommy’s – are trying to lift the taboo around the issue, after surveying more than 1,300 people who have been through the experience. Almost three-quarters didn’t feel their loss was treated like a miscarriage or stillbirth – they didn’t feel they would get the same compassion, or that they could talk openly about their experience. Afterwards, 87% felt guilty, 80% isolated. While grief is the unavoidable consequence of tragedy, the wall of silence makes everything worse.
“Terminations have always been the hidden part of this whole journey, the shameful bit we don’t really want to talk about,” says Karen Burgess, the founder of Petals, whose background as a counsellor in the field of pregnancy loss is audible in her deeply compassionate voice. “Then parents are sucked into that vacuum – they feel as though they have to hide away in shame.”
Samantha and Sam, from Bristol, discovered anomalies at a 17-week scan; it was later confirmed that their baby’s skull was not developing and she would not survive more than minutes if she went to term. Samantha, who had got pregnant naturally after a long struggle, while they were just about to embark on IVF, uses almost the same words as Silma: “At the 20-week scan, what can go wrong? You just find out whether you’re having a girl or a boy.”
Roughly half of couples don’t even know what anomalies a scan might reveal before they get a diagnosis. But Fisher believes the problem is not just a lack of public awareness. “Sonographers say: ‘If only they had better information, it would be all right.’ It wouldn’t be. Everyone is completely shattered by the reaction they have. We get a lot of calls from women who are really shocked by how shocked they feel. They feel like it undermines the unconditionality of their love. That it’s still their baby. That they should still love it. There are women who feel like their whole identity has collapsed.”
Suddenly, couples find themselves in a world of diagrams and complicated terminology, odds that can’t map neatly on to emotions. Kelly has to deliver bad news to parents “at least one Monday a month. It’s like the policeman’s knock in the middle of the night. Part of you is doing a jigsaw puzzle – you’re picking up the bits and pieces to make a diagnosis and you’re trying to work out what the next test is going to be. Part of you is walking up a path, at three in the morning, dead of night, and you know that as soon as the door opens, you’ll crush the parents with the news you’re going to give them.”
Depending on the accuracy of the estimated due date, and the battery of further tests, time is often now very short. Twenty-four weeks is the legal limit for most terminations in the UK (except for Northern Ireland, where a termination between 12 and 24 weeks can only be performed if there’s a severe risk to the mother). After that, termination is still legal if there is a “substantial risk of significant handicap”, which would be for a doctor to decide.
Silma and Binit were already further along than they thought – 22 weeks at the 20-week scan – waiting for genetic test results that would take 10 working days. The picture looked bleak: not only did Mia have congenital heart defects, but cardiologists also expected problems with her lungs. Binit recalls being told about the possible outcomes, and thinking: “Fine, there might be an x% chance of the baby surviving all the surgeries and leading a normal life, but what if it’s not that? What if she’s the per cent that doesn’t make it through the open heart surgery?” Covid added a layer of uncertainty, as communications between departments got lost in the chaos, and labs were overwhelmed processing coronavirus tests. “My fear was getting lost in the system because of all the Covid issues,” Silma says.
“On the psychological side,” Fisher says, “people’s capacity for dealing with uncertainty was really impacted by the pandemic background. They may have been able to cope with a bit of uncertainty, but it was just too much.”
Silma and Binit decided to terminate their pregnancy on the weekend of the 22nd week. On the Monday, Silma went into work; after all, she was still a pharmacist, and her team had never been so busy.
“On Tuesday, we went to the hospital thinking everything would happen then, and it would be over and done with within the next day or so. And they said: ‘You did know that you have to have an injection into her heart, to stop her heart beating?’ And I said: ‘No, no one explained that to me.’”
This is a very common experience for couples having what’s known as a medical termination, Burgess says. “There’s not enough information about what it means. They’re going to go through labour and birth a baby. That has a massive impact; the woman is often not ready for that. The partner will then say: ‘I don’t want that – there must be something else that can be done.” So then they go through what they call a surgical termination, which a lot of hospitals can’t provide. So then the woman has to go and find an abortion clinic.”
Kelly says: “These things aren’t discussed in a public arena because people find them distasteful.” The “most difficult part” of the process, she adds, is stopping the baby’s heartbeat. “It is just unspeakably tragic, for families who desperately wanted that child.”
Counsellors in the field generally agree that, if the hospital has the right level of support, the right facilities – a bereavement suite to labour in, so women don’t have to be among women who are carrying healthy pregnancies to term – a medical termination is better, psychologically, than a surgical one. But that’s a lot of ifs, and there is an unspeakable amount of trauma and distress either way. When Silma went in to deliver Mia, they didn’t even know if Binit would be allowed to be with her; it was up to the staff on the day (in the event, he was). Neither remembers the labour clearly – to Binit “it was a blur”; “I was completely numb,” Silma says. They could hear other women having their babies, or walking out with them. Mia died on 3 April and they said goodbye the following morning, a moment Silma starts to describe before being overwhelmed. Binit takes over, looking at Silma. “It was tough, seeing her. You couldn’t let go. It was really hard.”
Samantha, similarly, went through a medical abortion, and afterwards “we went into our shell. Obviously we’d told our parents and very close friends, but I hadn’t openly told loads of people that I had a termination, I just said: ‘We lost the baby.’ I don’t really know why. And does it matter? At the end of the day, you lost your baby.”
Silma and Binit “were open with everyone”, he says, and Silma’s colleagues in particular were a rich source of support. “It’s very different from if you’ve had a miscarriage or a stillbirth,” Silma says. “It’s not a natural death. You’ve ended your own baby’s life. I think that guilt was probably most intense after the postmortem and the funeral but for me, it was when we started the counselling that I acknowledged it and we only really started processing what had happened then.”
If anything, the taboo around termination for medical reasons has got more, rather than less intense, with views particularly polarised around Down’s syndrome, which accounts for 20% of TFMRs. Most of the people who get a Down’s diagnosis do still terminate, and many feel boxed into silence afterwards. “This raises a challenge for all of us,” Kelly says, “to try and help families break the taboo. It has to come from the profession as much as from the women who are brave enough to speak openly about their own experiences.”
A grief that is unspeakable is very isolating, never more than when parents go into a subsequent, successful pregnancy. “The number of times they will have triggering events,” Kelly says, “whether it’s a scan, or a throwaway remark. They can’t speak about a previous pregnancy, nor do they feel that they even deserve to have a subsequent pregnancy. Often I’m the first and only person they can have that conversation with. So the complexity of their grief and trauma is enormous.”
More than that, the overriding fear shared by Silma and Binit and Samantha and Sam was that their healthy baby would make them and others forget the baby they lost. Samantha is 33 weeks pregnant, and says: “When people lose babies, people may think they don’t want to talk about it. But actually if someone asks me about my baby, I do want to talk about her. I’m coming up to almost a year after losing her, and now I’ve got another baby on the way. You worry that people are going to forget about your first baby.”
“My main concern,” Silma says, “was that if we did get pregnant again after Mia, would we stop thinking about her? Would we be able to keep her memory alive?” Silma and Binit had a beautiful baby girl in June. “I think that she has a lot of Mia’s traits,” Silma says.
