It was typical of Samantha Willis that she bought the food for her baby shower herself. No fuss; she didn’t want other people to be put out. She even bought a cheese board, despite the fact that, because she was pregnant, she couldn’t eat half of it.

On 1 August, the care worker and mother of three from Derry was eight months pregnant with her third daughter. The weather was beautiful, so Samantha stood out in the sun, ironing clothes and getting everything organised for the baby.

Then the texts started to come through, first to Samantha and then to her husband, Josh, a 36-year-old civil servant: they had Covid. They had taken a test the day before, after coming into contact with someone who was positive. Samantha rang around her family and friends, cancelling the baby shower.

Both Samantha and Josh were homebirds – the sort of people who loved nothing better than watching Netflix and snuggling on the sofa – so the prospect of an enforced self-isolation didn’t seem so bad. “We were looking forward to a week in the house,” says Josh. “We thought we’d sit in the garden and cook and get the house organised.”

It never crossed either of their minds that Samantha would fall seriously ill with Covid. She was only 35 and in good health, with no underlying conditions. Samantha was unvaccinated – she had received advice against getting jabbed at an antenatal appointment. “They gave her a flyer telling her there wasn’t enough research on the Covid vaccine in pregnant women,” says Josh. He found the flyer among her things recently. It read: “The vaccines have not yet been tested in pregnancy, so until more information is available, those who are pregnant should not routinely have this vaccine.”

Later, when the guidance changed to advocate vaccination in pregnant women, Samantha was nearer her due date. “We thought: people are off school, she’s on maternity leave, it’s pretty safe now,” says Josh. “We decided she would get it after her pregnancy.”

The couple were careful to limit their contact with the outside world, given Samantha was unvaccinated and pregnant. “We thought we’d be safe in the house,” says Josh, who worked from home. By the time of the positive tests, whenever they needed a change of scenery, they would pick up a Chinese takeaway and eat it in the car.

They had been careful; they had come so far. Samantha was due to give birth in less than a month. Their positive Covid tests, while a mild inconvenience, were nothing to be unduly concerned about. “It didn’t even cross our minds that we would get sick,” says Josh.

***

Samantha was born in 1986, the oldest of five children. In childhood, she was “more or less a tomboy”, says her mother, Mary Davidson, 54, who lives in Derry and is a support worker for people with learning disabilities. “She went out nice and came in mucky as anything.”

Samantha left school at 16 to work as a hairdresser, then at a dry cleaner’s. She had her first two children young: Shea, her son, when she was 17, and Holly, her eldest daughter, when she was 20. She didn’t like to talk about her 20s. “It was just one of those things I wasn’t supposed to ask her about,” says Josh. “She didn’t want to dwell on things.”

The couple met in a Derry bar on Samantha’s birthday in 2012. Everything moved quickly. “She idolised that man,” says Mary. “He was the love of her life.” They married in March 2019. “When we got married, I told her: I’ll never get married again,” says Josh. The same year, Samantha began working as an at-home carer. It was exhausting but rewarding work; 11-hour shifts were commonplace. “She got attached to the service users,” says Mary. “If anyone passed away, she would cry.”

Samantha was the sort of person who would get out of bed at 2am to drive a friend home if they couldn’t find a taxi. She loved watching trashy TV, such as Keeping Up With the Kardashians, and making extravagant Halloween costumes for the kids; she loved decorating people’s Christmas trees and sliding her freezing cold feet in between Josh’s feet in bed. (He hated this.)

“I wish I had done a lot more for her,” sighs Josh. “I thought we had another 50 years or so, to watch the wee ones grow up.”

When the Covid vaccine programme began in the UK on 8 December 2020, pregnant women were told not to get vaccinated, as Samantha would discover a few months later.

In March, Stella Creasy, the Labour MP for Walthamstow, received a leaflet from Public Health England that read: “[The Covid vaccine] has not yet been assessed in pregnancy, so it has been advised that until more information is available, those who are pregnant should not have this vaccine.” She was pregnant at the time, with her second child.

Because Creasy felt uneasy about the rationale for excluding pregnant women from the vaccine programme, she raised her concerns repeatedly at the weekly video-call sessions with the then minister for vaccine deployment, Nadhim Zahawi, to which all MPs were invited. Also on these calls was Prof Anthony Harnden of the Joint Committee on Vaccination and Immunisation (JCVI), the committee of scientists that advises the government on vaccine policy.

“They kept saying to me that a pregnant woman is at no greater risk of dying than her non-pregnant counterpart,” says Creasy. But in October 2020, the Royal College of Obstetricians and Gynaecologists (RCOG) published guidance warning that “intensive care admission may be more common in pregnant women with Covid-19 than in non-pregnant women of the same age” and that pregnant women with Covid were three times more likely to have a preterm birth.

Further evidence emerged in 2021 indicating that pregnant women were particularly vulnerable to Covid, especially in their final trimester. Research from the University of Washington, published in January, found that pregnant women were 13 times more likely to die from Covid than people of a similar age who were not pregnant.

This is unsurprising, says Dr Kristina Adams Waldorf, the study’s lead author, because pregnant women have long been known to be more vulnerable to respiratory viruses. (It is for this reason that pregnant women are advised to have the flu vaccine.) “The immune system in a pregnant woman changes to make sure that the body doesn’t reject the foetus as an immunologically foreign object,” Waldorf says. “When it does this, it becomes impaired in the way it fights infection – and that makes it more difficult to fight a virus like influenza or Covid-19.”

But throughout February and March, the JCVI’s scientists did not appear especially concerned about examining the case for vaccinating pregnant women. “They kept telling me: ‘This is an issue for [addressing when we vaccinate] younger age cohorts,’” says Creasy. Priority in the early stages of the vaccine programme was being given to older people, so many pregnant women remained towards the back of the queue.

The maternity campaign group Pregnant Then Screwed was also sounding the alarm. “If you look at who was on the Covid war cabinet and leading the daily briefing, it was nearly all men,” says Joeli Brearley, its founder. “Pregnant women were treated as if they were very similar to the general population, rather than being seen as a special cohort that needs special consideration. They were just not a priority.”

Brearley sees this as part of a pattern of generalised apathy towards pregnant women from policymakers. She points out that, even after the government reopened bars and nightclubs, some NHS trusts continued to impose visiting restrictions on pregnancy scans and labour. Pregnant Then Screwed is taking legal action against the government for indirect sex discrimination against women who took maternity leave and were eligible for the self‑employed income support scheme, but received lower payouts due to the fact they had taken maternity leave.

By early April, the case for vaccinating pregnant women was mounting. Creasy says that she emailed Matt Hancock, the then health secretary, urging him to consider the evidence. “I was terrified,’ she says. “Because I had read the data, as had lots of pregnant women. People were asking me about it. They were looking at me, saying: what shall I do?” On 16 April, the JCVI announced that pregnant women would be offered the Pfizer or Moderna vaccine at the same time as the general public, based on vaccination data from more than 90,000 pregnant women in the US.

But even though pregnant women were now eligible for the vaccine, the infrastructure was not in place to support their vaccination. Women booking vaccines using the online booking system weren’t able to specify Moderna or Pfizer vaccines, as per the JCVI’s guidance. “Pregnant women were telling us that they were being turned away from vaccine centres because they didn’t have the right vaccines,” says Brearley. On 25 April, Creasy wrote to Zahawi, explaining that the NHS booking system needed to be updated to allow pregnant women to specify their vaccines, but the system was not amended until 7 May.

Even though pregnant women were now eligible for the vaccine, the expert advice was noticeably tepid. “We believe it should be a woman’s choice whether to have the vaccine or not after considering the benefits and risks … this move will empower all the pregnant women in the UK to make the decision that is right for them,” said a spokesperson for the RCOG.

“It is very different to say: ‘We have no evidence that the Covid-19 vaccination is harmful in pregnancy,’ rather than: ‘Our evidence strongly supports that the Covid-19 vaccine is safe and effective in pregnant women,’” says Adams Waldorf. “This hedging language has resulted in a lot of misinformation and misunderstanding. Pregnant women are being given conflicting messages. Many aren’t realising that the data overwhelmingly shows that the vaccines are safe and effective.”

Women presenting to vaccine centres throughout the spring and summer were given out-of-date leaflets telling them they were not allowed to get the vaccine, or else discouraged from getting vaccinated. Ellie Parrott, a 26-year-old administration manager from Hertfordshire, went to get vaccinated at a leisure centre in Harlow in July. “They turned me away and told me that I’d need to speak with my GP,” she says. After speaking with her GP, she was finally vaccinated in September, nearly two months later.

Ella (not her real name), who is 38 and lives in London, gave birth in July. She says that most women in her WhatsApp group for expectant mothers were told to wait until after their babies were born to get vaccinated. When Ella told her midwives that she wished to get vaccinated, they were lukewarm. “There would be this pause and then they would say: ‘Are you sure?’ It was really not what I wanted to hear,” she says. “I wanted them to support and validate my choice.”

Louise Williams, a 32-year-old teacher from London, was vaccinated by the time she attended an antenatal appointment at Barnet hospital in June. But she was horrified to overhear a midwife telling another pregnant woman that she wasn’t allowed to have the vaccine. “She was completely misinformed,” says Williams.

A Pregnant Then Screwed survey of 6,869 pregnant women in July found that 47% had been given conflicting advice about the Covid vaccine by a health professional.

As a result, vaccine uptake among pregnant women was slow. Research from St George’s University hospitals NHS foundation trust, conducted between March and July, found that only 10.5% of pregnant women surveyed received at least one dose of the Covid vaccine before giving birth.

By June, the RCOG was so concerned about vaccine uptake in pregnant women that it dropped its earlier position. “We understand this is a very challenging time for those who are pregnant … but we want to reassure them that vaccination in pregnancy is safe and effective in preventing Covid-19,” a spokesperson said in a press release. On 22 July, a coalition of organisations including Pregnant Then Screwed, the Royal College of Midwives and the RCOG wrote to Sajid Javid, the health secretary, to ask him to prevent the spread of misinformation about the risks of Covid vaccines in pregnancy and to ensure that the staff in vaccine centres were given the most up-to‑date research and data.

Ultimately, however, this change in position was ineffectual. By July, ICU beds were filling up with pregnant women. Data from the UK Obstetric Surveillance System (UKOSS), published that month, found that 98% of the 171 pregnant women hospitalised with Covid symptoms since mid-May had been unvaccinated. One in 10 of these women required intensive care. Internal NHS data revealed that women who tested positive for Covid at the time of birth were twice as likely to have a stillborn baby.

All through the summer, beleaguered NHS clinicians worked to save desperately ill pregnant women and their unborn children. “It was your worst fear,” says Creasy. “That something you wanted to prevent did happen.”

***

By 3 August – two days after the news of her positive test – Samantha was having trouble breathing. It took her ages to get out of bed and get dressed. “We thought: if she’s having difficulty, then the baby is having difficulty,” remembers Josh. “We weren’t thinking about her health at that point, just about the baby.”

Mary brought over a pulse oximeter, which measures the saturation of oxygen carried in red blood cells. Samantha’s sats were 87%, well below the safe limit of 95%. After speaking with a GP, Josh dropped Samantha at Altnagelvin Area hospital. “I didn’t even give her a hug or a kiss,” says Josh, sounding tormented. “I thought I’d see her again in a couple of days.”

On 5 August, doctors delivered Samantha’s baby, Eviegrace, by caesarean section. Josh wasn’t allowed in the room, because of the Covid risk. He watched at home, from an iPad. It was a bittersweet experience. “She never wanted a C-section,” says Josh.

After Eviegrace was born, Samantha seemed to be improving. “She said she could breathe a wee bit easier,” says Josh. She was moved from the ICU to the general respiratory ward on 9 August. Nurses brought her Eviegrace’s teddy bear from the neonatal ward. They sent her photographs and videos of the baby girl she had never held.

On 12 August, Samantha’s oxygen levels plunged. She had to be ventilated on the ward, because doctors weren’t sure she would make it to the ICU. Josh was at St Eugene’s cathedral at the time, with their four-year-old daughter, Lilyanna. “She lit a candle and said: ‘I hope Mummy gets better soon,’” Josh says. He got a phone call in the car to say she was deteriorating and that he should come in. “I thought: I won’t be lighting candles in a hurry any more,” he says.

At the hospital, Josh held Samantha’s hand. She was ventilated, lying on her front, wires snaking out of her. Josh told his wife that everyone missed her, so much. He urged her to fight and get well. He hoped that the sound of his voice would somehow reach her. After a few hours, he returned home and gave Lilyanna the news.

“I said to her: ‘Mummy might die,’” says Josh, clearing his throat. “She said: ‘Who will be my mummy then?’ I said: ‘She will always be your mummy, even if she’s not here.’” Later that evening, the hospital summoned him again and told him that this was the end. Josh, Shea, Holly and Mary entered the room. A priest administered the last rites.

Samantha died just after midnight on 20 August. The nurse told Josh first, then Mary, who screamed. “I had to get out of there,” she says. “I panicked. That’s my regret.” Josh, Shea and Holly stayed with Samantha until the morning. “It was the only time any of us had had with her for over two weeks,” says Josh.

It took Josh five attempts to leave the room. “I knew that it would be a closed coffin, because of Covid,” he says. “When I left, I was never seeing her again.”

***

Samantha was initially discouraged from getting the Covid vaccine because the clinical trials that proved the vaccines were safe did not include pregnant women. Even before the vaccine programme began, academics had warned of the dangers of excluding pregnant women from trials. In August 2020, Prof Marian Knight of the University of Oxford co-authored an editorial in the British Medical Journal, pointing out that only 1.7% of 927 Covid-related trials specifically included pregnant women. “We may face the paradoxical situation of recommending vaccination for a risk group in which the vaccine is untested,” Knight wrote.

“What I predicted has come to pass,” Knight says now. “What I didn’t predict, really sadly, is that I would also be counting women dying from a vaccine-preventable disease due to the high levels of uncertainty among pregnant women, and inconsistent advice.”

As the leader of the nationwide MBRRACE-UK study, Knight is probably Britain’s foremost maternal mortality researcher. Every time a woman dies within a year of giving birth in the UK, Knight investigates. “My job is hard, because I deal with tragedy,” she says. “But I always try to see the big picture. For me, the ultimate tragedy is not to learn from these deaths.”

Knight has been collecting the statistics on unvaccinated pregnant or postpartum women who have died of Covid. From February to September, 235 women were admitted to ICUs with Covid, of whom 98.7% were unvaccinated. Thirteen have died since July. Almost all were unvaccinated.

“Never before have I wanted to cry so much as I have in the last few weeks,” says Knight. “Because I feel we’ve failed these women. They’re dying because they haven’t been vaccinated.” It is the single most disturbing experience of her decades-long career, she says.

Knight sees this as an issue of medical equity. “This is one of the major structural biases we have got within the system,” she says. “Pregnant women don’t get equitable care compared with non‑pregnant people.”

Even when pregnant women are admitted to ICU beds, they may not be given the same access to potentially life-saving medications as non-pregnant people. Clinicians are reluctant to treat women with the full range of Covid therapies, because these drugs haven’t been tested in pregnant women. “If the doctors would talk to obstetric physicians, they’d be able to advise on which drugs you can give to pregnant women,” says Knight. “But the default is that they don’t give pregnant women anything, because they’re worried [about the side-effects].”

This issue is not specific to Covid. Women of childbearing age are routinely excluded from pharmaceutical trials, regardless of whether or not they are pregnant, breastfeeding or using contraception. The reason for this is historical and can be summed up in one word: thalidomide.

Developed in the 50s, thalidomide was used to alleviate morning sickness in pregnant women. The drug led to birth defects in thousands of children and transformed the way in which regulatory bodies approved medicines. In 1977, the US’s Food and Drug Administration (FDA) effectively banned women of childbearing age from most clinical trials.

“Thalidomide is without doubt the reason we have such an extremely cautious approach to testing drugs in pregnant women,” says Knight. A number of women reported to Pregnant Then Screwed that they had been turned away from vaccine centres for that exact reason. Brearley says: “The number of times a health professional said to a pregnant woman: ‘We don’t want another thalidomide incident …’”

But pregnant women can and do fall ill – and should be given equal access to evidence-based medicine. “There’s a default attitude among doctors that women should stop taking medication when they are pregnant,” says Knight. “But women may have conditions that need medication in pregnancy.”

Experts disagree about whether pregnant women should be included in clinical trials. But many feel that excluding all women of childbearing age from drug testing trials is unnecessary and even a form of medical misogyny – part of a pattern of generalised contempt for bodies that are not male and able-bodied. “It’s pure sexism,” says Brearley. “Everything about it makes me furious.”

As a result of this mass exclusion, pregnant women don’t receive the best evidence-based medicine. “There are a number of factors that affect the functioning of a drug in our body,” say Dr Maria Teresa Ferretti of The Women’s Brain Project, a Swiss collective of scientists that study and advocate for better consideration of sex and gender in precision medicine. “Men and women have different sex hormones and they also have different genetics. The immune function is different between men and women. There are biological reasons why the same drug may have different effects in men and women.”

The situation is gradually improving. In 1993, the FDA lifted its ban on women participating in clinical trials. Women now represent about 43% of all trial participants globally, although they tend to be underrepresented in higher-risk phase 1 trials. Knight believes that regulation is needed to ensure equity in medical testing.

“There will never be any incentive for companies to test vaccines or medications in pregnant women, because they’ve got a big market elsewhere,” she says. “Unless the regulator insists as part of the licensing requirements, pregnant women will always be an afterthought.” The Women’s Brain Project champions a global registry, in which clinicians could provide real-world information about the safety of drugs in pregnant or breastfeeding women.

After high-profile tragedies, such as the death of Saiqa Parveen, a mother of five from Birmingham, ministers and public health officials are now loudly promoting the benefits of vaccination. This month, Prof Chris Whitty, England’s chief medical officer, warned at a Downing Street press conference of the “stark” numbers of pregnant women being hospitalised with Covid, describing these cases as “preventable admissions”. Some NHS trusts have begun administering the vaccine at antenatal clinics, although this is not yet a nationwide policy.

But as recently as October, pregnant women were reportedly turned away from vaccine clinics. That month, NHS England figures showed that one in five Covid patients requiring ECMO treatment – the highest form of life-saving treatment on offer in the NHS – were unvaccinated pregnant women. Last week, Dr Latifa Patel, a chief officer at the British Medical Association, told the i that she felt that “pregnant women have been let down by society, the NHS and the government” during the pandemic, due to confused and mixed messaging around the safety of vaccinations in pregnancy.

Pregnant women are still not deemed a vulnerable group by the government, nor were they made eligible for booster vaccines. Last month, the RCOG said only about 15% of pregnant women in the UK were fully vaccinated (although data analysis suggests the figure is probably higher than that).

***

On 23 August, the Willis family held a baptism and a funeral. The sun shone brilliantly as Eviegrace was carried into the church behind her mother, who arrived in a coffin covered in white flowers. Josh had insisted the baptism and the funeral be held together; it was the only way that Samantha could be there.

Around Derry, Josh has become a tragic celebrity. “I can’t go on a walk without people looking at me,” he says. “It’s a small enough city. People think: there’s that boy whose wife died of Covid and had the baby christened at her funeral.”

He visits Samantha’s grave every day and talks to her about the weather. He tells her how many weeks it has been since she died. He tells her that they are all doing OK. He asks her to watch over them and keep them safe. “I hope one day we will see each other again,” says Josh. “In another 50 years or so.”

Mary hopes that pregnant women will hear Samantha’s story and get vaccinated. “Do you want to carry a baby and not be there to rear it?” she says. “It’s a no-brainer. Get the injection.” Josh isn’t angry at the situation, but he wishes things had been different. “What can you do?” he says. “You would go off your head if you let it bother you.”

Because it is what Samantha would want, Josh is pushing ahead with their plans. He is in the process of buying their council house and redecorating it according to Samantha’s designs. “She would want us to march on,” says Josh. “But we will never forget her. I won’t let Lilyanna forget her. And when Eviegrace is older, we’ll tell her all about her.”

Mary finds it hard to look at Lilyanna and Eviegrace. “The fact them poor kids don’t have their mother, that’s the hardest part,” she says. “Thinking about what they will miss out on. That is what breaks my heart.”