Alice Smith was five months pregnant when she noticed some discharge one evening, and something felt off. She did an online yoga class and went to bed early, but the next day she felt worried enough to phone the maternity triage line. The midwives invited her in for a checkup at Homerton hospital, near her home in east London. Smith emailed her boss to explain she’d be offline for a few hours and then headed to hospital.
Until then, her pregnancy had progressed smoothly. She was 37 years old, healthy and expecting twins: a boy and a girl. A routine ultrasound a few weeks earlier had suggested all was well. Smith and her husband, Jim Clack, had already decided to name their daughter Peggy. For their son they had drawn up a shortlist of names.
In the waiting room at Homerton, Smith began to feel an ache in her lower back. When the registrar examined her, she told Smith that she was in labour and already 3cm dilated. The average pregnancy is about 40 weeks long, but Smith was just 23 weeks and four days pregnant. If the babies died, which was the most likely outcome, their deaths would be classified as a miscarriage rather than stillbirths.
Twenty-three weeks is on the cusp of viability. Every hour that the twins’ birth could be delayed would improve their chances. The doctors gave Smith steroids, to strengthen the babies’ lungs, and magnesium, which aids brain development. Smith phoned Clack, who rushed to the hospital.
Five hours after she arrived at Homerton, Smith went to the toilet, where her waters broke. Suddenly she was on her hands and knees and, as the room flooded with medics, she felt a powerful urge to push. The boy arrived first. Bodhi, as they named him, weighed 616g, less than a fifth of the average weight of a newborn boy. Twenty minutes later, Peggy arrived. She weighed 550g. The twins’ eyelids were fused shut; their skin, only part formed, was as thin and delicate as wet tissue paper; their miniature fingers were translucent. They could fit in the palm of your hand. “They didn’t look like babies, they looked like foetuses,” Smith told me.
At 23 weeks, an infant’s lungs cannot function independently. They are as small and fragile as butterfly wings, and the networks of blood vessels and alveoli – the ballon-like air sacs that inflate with each inhalation – are not yet properly formed. If doctors do nothing, these babies will certainly die, usually within an hour of birth. In many cases, doctors try but cannot resuscitate and stabilise them. Because transferring such tiny babies between hospitals is risky, the chances of survival are highest when they’re born in a hospital with a level 3 neonatal intensive care unit (Nicu) – one equipped to care for the smallest and sickest babies. Homerton, by chance, is one of them.
The medical notes record that Bodhi was “born in poor condition” and made “no respiratory effort”. Peggy was described in her notes as “floppy, white, pale”. For each child, the doctors delivered the first resuscitation breaths using a bag mask – a tiny version of the kind used for adult CPR – a plastic mask connected to an inflated bag that doctors squeeze with one hand. Then the doctors eased a breathing tube, only a few millimetres wide, down the twins’ airways and into the lungs, so that each baby could be connected to a ventilator and admitted to the Nicu. Their parents, shell-shocked, remained in the delivery room alone.
Just under half of 23-week-old babies who are successfully admitted to neonatal care will survive to go home some months later. If they survived, there was a small chance that Peggy and Bodhi would grow up unaffected by their difficult start to life, but it was much likelier that they would suffer some long-term health problems. Doctors estimate that a quarter of those born at 23 weeks will have a “severe disability”, meaning that they might never be able to walk or feed themselves, they might have significant problems seeing or hearing, or they might never be able to live independently.
A week after the twins’ birth, the couple learned that, when Smith’s waters broke, a team of neonatologists were already on their way to see her, intending to discuss the couple’s options. When babies are born on the edge of viability, between 22 and 24 weeks, their prognosis is often so poor that parents and doctors must decide together what is in the baby’s best interests. Do they deem the chance of survival so low that it is better to offer “comfort-focused care”: to do nothing that might cause the baby pain, and let them die peacefully in their parents’ arms? Or is the right approach to pursue “survival-focused care”: to resuscitate them and admit them to the Nicu, where they will undergo many painful and invasive treatments, in the hope that they will defy the odds and live? Doctors call this period at the limits of viability, when the ethics of whether to resuscitate babies is deemed so uncertain that it is seen as a matter of parental choice, the “grey zone”.
The grey zone has shifted downwards in recent decades as neonatology has advanced to save ever younger babies. Back in the 1970s, the very youngest babies to survive were 27 weeks old. Now, medical viability starts at about 22 weeks.
This progress hasn’t been driven by gamechanging discoveries and new miracle drugs – in fact, the last major medical breakthrough in this field came in the 1980s – but through many incremental improvements. “It’s like the Olympics cycling team,” said Helen MacTier, a retired consultant neonatologist. “Everything is better: it’s better ventilation, it’s better equipment, it’s better-trained people, it’s better nutrition, it’s better perinatal optimisation – steroids, magnesium sulphate, antibiotics – the things we know improve outcomes.”
Almost every neonatologist will tell you that success in their field is partly self-fulfilling: extremely premature babies won’t survive unless doctors try to save them, and they won’t try to save them unless they believe they have a chance of succeeding. And so the survival rate among the world’s youngest babies is determined to an extent by what doctors believe is possible, and what they believe is ethical. For Peggy and Bodhi to have been born four months early and still have a fighting chance at life required knowledge neonatologists could only build up over decades of taking on borderline cases – accepting patients slightly younger and slightly smaller than any they had ever treated – and doing everything in their power to save them.
Without knowing what Smith and Clack would have chosen, the doctors determined that the twins’ chances of survival were good enough to warrant doing everything possible to keep them alive. But when doctors push the limits of science and human biology, they are more likely to fail than to succeed – and that means putting babies through treatments that have little chance of saving their lives, and will likely make their short time on earth more painful. To save the world’s smallest babies requires constantly grappling with some of the biggest questions we can ask of a person, not least: how much are you willing to risk – how much money, how much suffering – to save a life?
* * *
Edward Bell vividly remembers the first time he resuscitated a 22-week baby. One evening in 1999, Bell – who is one of the world’s leading neonatologists – received word that a mother who had gone into labour 18 weeks early was asking for him to attend her birth. At the time, 22-week babies were deemed unviable and neonatologists didn’t attend the deliveries because there was nothing useful for them to do. Bell went to the labour unit to explain this to her. “And she said: ‘Dr Bell, you don’t remember me, but you told me the same thing five years ago, when my 23-week-old daughter was born. She’s alive and doing well. So please could you try with this baby?’ And so it was hard to say no,” he told me. He managed to admit her baby to the Nicu, but the baby died. The following year, however, another mother persuaded him to try to resuscitate her 22-week-old baby. This time, the baby survived.
Bell has a saying, “You have to push the wall to see if it will move,” and he instils the importance of optimism in his team at the University of Iowa Stead Family children’s hospital. If they are to succeed, he says, doctors and nurses must believe that their patients – however small or premature or sick – can survive, because only then will they pursue the intensive treatments that work. Bell and his team have cared for some of the youngest babies ever to survive, including at least four born at 21 weeks, and one who weighed just 240g, the weight of an apple, or an iPhone. The survival rate among 22-week babies admitted to the Nicu at Iowa Stead Family children’s hospital is 64%, the highest in the US.
American neonatologists often visit Bell, hoping to replicate Iowa’s success. He explains that hospitals changing their approach must do so in stages. You need to get good at treating 24-week babies before you can treat 23-week ones. But sometimes progress stalls, because doctors don’t realise that the first few times they treat a baby slightly more premature than any they have cared for, failure is almost inevitable. “Hospitals in the US become discouraged when they start to care for these babies, because the first 10 babies may die and everyone becomes despondent and says: ‘Why are we doing this? It’s not working,’” he said. “It’s a difficult transition, but over time the expertise will come if people don’t get discouraged.”
When Peggy and Bodhi were born, the UK was in the middle of such a transition. The twins arrived in April 2020, during the eerie first days of the pandemic, and six months after the UK changed its national framework for how doctors should care for extremely premature newborns. Until October 2019, the guidance – drawn up by the British Association of Perinatal Medicine – advised that babies born earlier than 23 weeks should not be resuscitated, and that at 23 weeks the decision not to resuscitate is “an appropriate approach particularly if the parents have expressed this wish”. Under the new framework, the emphasis shifted in favour of offering survival-focused care at 23 weeks. And, for the first time, UK doctors were advised that some babies born at 22 weeks can be resuscitated, should the parents choose this.
As a result of the guidance, the UK now has one of the lowest thresholds for medical viability in the world, and the survival rate among the country’s most premature babies has shot up. Research published in the British Medical Journal (BMJ) in 2023 found that the year after the new guidelines were introduced, the number of babies in England and Wales who survived after being born at just 22 weeks’ gestation tripled. (The guidance applies to the whole of the UK, but the data the researchers used covers only England and Wales.) Of the 295 babies born alive at 22 weeks in 2018-19, 13 survived to go home, a survival rate of 4.4%. The following year, the survival rate was 12.2%. So what changed? In 2018-2019, only 59 babies born at 22 weeks were offered survival-focused care. A year later, 183 were. The increase in survival was driven by a change in approach: three times as many babies born at 22 weeks survived because doctors tried to save them three times as often.
Helen MacTier, the retired neonatologist, headed up the working group that revised the UK’s national guidance in 2019. She told me that the previous advice, published a decade earlier, had become outdated. Survival rates had improved enough that many neonatologists no longer felt comfortable not resuscitating at 23 weeks – and some were already occasionally attempting it at 22 weeks. In other words, NHS doctors had begun pushing the wall.
Parents were also becoming more likely to demand resuscitation at lower gestations, several neonatologists told me. Nicholas Embleton, a professor of neonatal medicine at Newcastle University, said parents seemed less concerned than they might once have been about the risks associated with extreme prematurity. They also seemed to have increasing faith in doctors’ abilities. “There’s been a big shift towards feeling that medicine can solve every problem,” Embleton said. One downside to this, he observed, is that almost everyone believes that their child will be the miracle baby, the one who will beat the odds.
When the guidelines changed, hospital policies changed “literally overnight”, said Cheryl Battersby, a consultant neonatologist and one of the co-authors of the BMJ paper. For the first time, she was called to attend the births of babies born at 22 weeks. “There’s something quite different about a 22-weeker,” she said. They are not only likely to be smaller than babies born just a week later; they are often physiologically different. “It’s like a new population of human beings,” Battersby said. Important structures within their lungs and kidneys have not developed. They suffer gut problems that doctors haven’t ever seen before. Sometimes the meconium – the black, sticky stool that babies pass after birth – becomes impacted, and sometimes their guts perforate spontaneously. Their skin is so delicate that these babies bleed at the gentlest touch. Sometimes, they don’t have enough skin to attach the electrocardiogram (ECG) pads needed to monitor their heart rate. Without the protection of skin or an adequately developed immune system, they are prone to suffering catastrophic infections and collapsing with septic shock.
The science of how best to care for them remains somewhat experimental. Keeping babies alive in the Nicu always involves difficult calibrations. You must give them just the right amount of oxygen, for instance – too little and they will die, too much and you may blind them – and at just the right pressure and frequency to avoid damaging fragile lungs. To confound matters, the world leaders in caring for 22-week infants – Japan, Sweden and a handful of North American hospitals – all do things differently. Some scan the babies’ brains and hearts at least twice a day to monitor for bleeds or other circulatory problems; others barely scan them at all. Some place babies in very humid incubators, to stop them losing too much fluid through their skin, while others place them in very dry ones to help their skin form faster.
The terrible flipside to the change in national guidance – one of many trade-offs that make decisions in neonatology so fraught – is that, in the UK, about 80% of 22-week babies who are offered survival-focused care will nonetheless die. And so, when the number of 22-week babies admitted to the Nicu tripled, so did the number of babies who died after spending days, weeks or even months in intensive care, having undergone painful and ultimately futile treatments. This is extremely costly and resource-intensive. It is also almost unfathomably traumatic for parents to lose a baby this way – to know that your child has known nothing of life but pain.
One British mother whose son was born at 23 weeks and died six weeks later told me she felt he had been “tortured beyond belief” in the Nicu. At one point, one of her son’s arms became necrotic, turning black and starting to wither, because a cannula for a blood transfusion had been accidentally inserted into an artery instead of a vein. As his condition deteriorated, she asked repeatedly for him to be offered palliative care and was denied this option. (Several neonatologists told me privately that many fear being sued for not resuscitating babies or withdrawing life-saving care.) The mother has since spoken to other grief-stricken parents who are furious that their baby was treated “like a science experiment” and subjected to fruitless and “barbaric” treatments by doctors. “When our son died, as hard as it was, it was a huge relief,” the mother said. “It’s completely disembowelling, the level of grief and guilt you feel. To want your baby to die is completely unnatural.”
* * *
Alice Smith had never planned on settling down until she met Jim Clack, after one lucky swipe on the dating app Bumble. The pair married in the summer of 2019, less than a year before the twins’ birth. She is a social worker, warm and outgoing, and he is an academic – tall, angular, wry. Clack spent the night after the twins were born doing the only thing he felt he could: reading everything he could find on extreme preterm birth, which really meant reading about all the many things that might go wrong. “Don’t Google anything,” he told his wife the following morning, before their first meeting with the neonatal team.
At the meeting, the doctors gave Peggy and Bodhi a one in four chance of surviving. They cautioned that the first 24 hours a preterm baby spends in the Nicu are sometimes called the golden hours. In the days that followed, some things would almost inevitably go wrong.
From the outset, Peggy was sicker than Bodhi. Whenever the doctors moved her, she’d stop breathing and her oxygen levels would plummet. The twins had such high care needs that they were placed in separate rooms initially, and because of Covid restrictions only one parent could visit at a time. Smith would sit with one baby, and Clack would sit with the other. He remembers waiting for Smith to come out from the Nicu and thinking, what is she doing in there? What should anyone do in there? On day four, they received special permission for Smith’s father, a vicar, to baptise the babies. He blessed them with a teaspoon of sterilised water, and it was the only time both parents could stay at the bedside together.
A routine scan, a few weeks after birth, revealed that Peggy had suffered a grade 3 brain bleed, which carries a significant risk of long-term brain damage. The doctors warned it might be months or even years before the effects were fully known. But despite their underdeveloped immune systems, the twins did not pick up any major infections. One of the nurses told Smith that, fundamentally, all the babies needed to do was breathe and grow. With so much terrifying medical terminology flying around, Smith found it reassuring to focus on that. They breathed, and they grew. One morning a consultant came in and said: “Look, they’re getting skin!”
* * *
One of the hardest ethical questions policymakers must grapple with is: how many babies should doctors be prepared to potentially harm in order that one might live? Different countries approach this problem differently. In the Netherlands, babies born before 24 weeks are not resuscitated. A Dutch medical committee affirmed this year that they would not change this policy, arguing that the health system lacked the resources to extend care for babies born before 24 weeks, particularly given the high risk that these babies will have long-term health problems and disabilities. Lien de Proost, a medical ethicist at the University of Leiden, told me she believes the Dutch position reflects a wider cultural aversion to suffering, as evidenced by the country’s euthanasia laws, which extend to newborns deemed to be suffering unbearably with no hope of improvement.
In Japan, by contrast, from the 1990s onwards, doctors began routinely offering survival-focused care at 22 weeks, said Tetsuya Isayama, the head of neonatology at the National Centre for Child Development and Health, in Tokyo. Today almost all 22-week babies in Japan are offered survival-focused care, and Japanese neonatologists have built up such expertise that the country has one of the world’s highest survival rates. Japan has developed several distinctive practices: the babies are given regular glycerine enemas, for instance, and are very heavily sedated. Several British doctors described feeling awestruck at the level of care provided in Japanese Nicus – something that would be hard to replicate in the NHS. To reduce the risk of infants developing a brain bleed or other injuries, for instance, two nurses will work together each time a 22- or 23-week-old newborn must be moved, repositioning each limb with the gentleness and precision of an expert defusing a bomb.
While most countries base their neonatal rules on gestational age alone, the UK encourages doctors to consider other factors that might influence a baby’s chance of survival. Being bigger, a singleton and a girl are all known to improve a baby’s chances.
Doctors are advised to present information as neutrally as possible: if you tell a parent that their child has a one in 10 chance of surviving, you should also tell them that means their child has a nine in 10 chance of dying. They’re also instructed to try to find out more about parents’ underlying values: how would they feel, for instance, about raising a severely disabled child? But while many neonatologists I spoke to agreed with these principles, they often underlined how hard they are to embody in practice. In many cases, critical decisions must be made quickly, when the mother may be in active labour, in shock and in pain.
“How can you make an informed decision in a situation of high emotion, when the complexities are endless?” said the neonatologist Nick Embleton. Parents cannot know what months of intensive treatment in the Nicu might look or feel like. He doubts, too, that percentages or probabilities are meaningful to parents in this desperate predicament. In 2021, Embleton himself became gravely ill with a rare blood cancer, an experience that led him to think more deeply about how frightening medical conversations feel for the patient. He told me he believes that not all doctors are aware of how much their body language or tone of voice will sway a parent’s decision.
Several neonatologists said that almost all parents will want the medics to do anything possible to keep their baby alive. The exceptions tend to be those who have previously had babies who were born extremely prematurely or have direct experience of caring for a family member with severe disability. A 2023 survey of Norwegian paediatricians – who, unlike most parents, know what the Nicu involves – found that 94% would not want their baby to be offered active care if they were born at 22 weeks, and 73% would not want it offered at 23 weeks. These personal preferences were at odds with standard medical practice in Norway, which favours survival-based care for extremely premature babies. Then again, would the Norwegian neonatologists have answered this question differently were this not a hypothetical question, not a hypothetical baby, but their own child?
In a BMJ podcast reflecting on the UK’s national guidance, the Canadian paediatrician Annie Janvier pointed out that neonatology is the only branch of medicine that considers the risk of disability a reason not to resuscitate a patient. The American Trauma Society, for example, lists only three reasons why a doctor should not attempt resuscitation: if the patient has been decapitated, if rigor mortis has set in or if the body has decomposed. If children and adults are resuscitated even when there is only the slenderest chance they may survive, Janvier asked, why shouldn’t we treat preterm newborns the same?
One of Janvier’s children was born at 24 weeks. In her research, she has explored the language neonatology uses around disability and “poor outcomes”, showing the disconnect between what the medical community judges to be bad and how the parents of premature infants often view their child’s challenges. I noticed the same when interviewing other parents whose babies were born very prematurely. “Will he ever be able to feel love?” Jade Crane remembers asking of her son, who was born at 22 weeks and experienced a major brain bleed. This was the only thing that mattered to her, and at the time doctors couldn’t answer her question. (He is now three, and although he has had developmental delays as a result of cerebral palsy, he can feel and express love.) The parents I interviewed whose children had long-term health problems as a result of prematurity – among them a mother whose son is blind, one with a toddler who required daily visits by a team of nurses, and two parents whose toddlers have cerebral palsy – spoke of wishing their child’s life was easier or that the world was better built for those with disabilities, or described the pain of letting go of the future they had once imagined for their child. But much more than that, they spoke of their gratitude, the love and joy their child brought to their lives, their child’s strengths and passions and idiosyncrasies.
For many reasons, however, it is not easy to express regret. Some mothers I talked to groped for ways to say the unsayable. I’d be OK with you paraphrasing this kind of sentiment, said one, but I wouldn’t want my child to one day read that in the Nicu, I sometimes wondered if we were doing the right thing. A 2011 BBC documentary, 23 Week Babies: The Price of a Life, concluded that the UK should consider following the example of the Netherlands and not resuscitating babies before 24 weeks. It included an interview with a neonatal nurse whose 21-year-old daughter was paralysed, with movement in only one arm, after being born at 26 weeks. “I don’t think we’ve ever sat down and said: ‘Was it the right decision?’,” the nurse said of her daughter, “Because I don’t think any of us wants to know what the other person thinks. I think I would be devastated if she thought I’d made the wrong decision, same as she would be devastated if she thought I thought I’d made the wrong decision.”
Smith and Clack described feeling haunted by the thought that, had their twins not arrived so quickly, they might have been asked whether they wanted them resuscitated. What tortures them is that they don’t know what they might have decided in those terrifying minutes right after they learned their babies were arriving far too soon. It pains them both how “ableist” their kneejerk fears were. “I can say it now, but at the time it was very difficult. In my head, I was like: ‘I don’t want a baby that’s got all these issues.’ You have these horrible, horrible thoughts – and you’re like, ‘These are my babies that I’m supposed to love, but I’m scared shitless,’” Smith said. She told a hospital therapist soon after the twins’ birth, when their lives hung in the balance, that she was too afraid to love them.
Almost every Nicu parent I spoke to described experiencing some form of post-traumatic stress response. “To a certain extent, everyone goes insane,” said Bella Jennings, whose identical twins were born at 24 weeks. “As a parent, all you want to do is to protect your child from harm in the world. And the first thing that happened to them was harm,” she said. The ventilators and cannulas and endless blood tests saved her babies’ lives, “but it was harm”. A friend of mine whose baby spent months in the Nicu said that although he had delivered aid to war zones and doesn’t flinch at the sound of gunfire, he panics when he hears noises that resemble the incessant beep of a hospital monitor – anything that reminds him of the many times his daughter crashed and had to be resuscitated. Clack, too, remembered the sounds of an alarm going off, “the immediate panic, then realising it was someone else’s child, and you have this weird relief, and then guilt”.
* * *
After five weeks, Bodhi’s lungs had developed enough for him to be weaned off his ventilator, and Smith could hold him for the first time. She remembers exactly how it felt, the warmth and slight weight on her chest. Peggy struggled for longer, but after two false starts she, too, was weaned off a ventilator.
The twins spent about four months in hospital, the minimum time expected. On 19 August 2020, Bodhi was discharged, and Peggy came home 13 days later. Clack and Smith celebrated with pizza and leftover wedding crémant, and they took their twins for a walk, enjoying the simple pleasure of doing something any new parents would do. They were no longer afraid each day that their babies would die, but they had to live with considerable uncertainty: how much would Peggy’s brain bleed affect her? Would Bodhi’s difficult start in life affect his health and development?
Surprisingly little is known about the long-term impact of being born extremely prematurely. “This is quite shocking, and sometimes I feel rather, as a community, irresponsible, in that we have no long-term outcomes of all those preterm babies we’ve delivered in the past decade,” said Cheryl Battersby, the neonatologist. Once they are discharged from the Nicu and into paediatric care, neonatologists rarely hear about how their former patients are doing. Since 2007, however, the National Neonatal Research Database has kept a record of all Nicu admissions, and Battersby is among the researchers linking this information to follow-up data on subsequent hospital visits, medical diagnoses and even educational outcomes.
This year, I met Battersby in her office in Chelsea and Westminster hospital, a bland box room enlivened with cards and photographs from grateful parents. She is 44 years old, fast-talking and formidably energetic. As she spoke, she swivelled between her laptop and her computer to pull up different data tables and PowerPoint slides. The UK’s neonatal data is the envy of international researchers, she said. The country has a diverse population and a centralised healthcare system that makes it possible to collect detailed and long-term patient information. Many countries aren’t able to collect data showing the proportion of preterm babies that are offered survival-focused care, for example, and so Battersby’s BMJ paper, showing how the UK tripled its 22-week survival rate by tripling the number of babies receiving survival-focused care, was of interest to neonatologists all over the world.
Since the 2019 guidance was published, a small group of British parents has been pushing for all 22-week babies to be offered survival-focused care, should parents want this – in effect, extending the “grey zone” to include all 22-weekers. Among this group is Jade Crane, whose twins Harry and Harley were born at 22 weeks and five days in 2021. When Crane went into labour, she requested steroids and magnesium but was not given them because, she says, her doctors did not believe the twins were viable. Only at her insistence did the hospital agree to offer active care to Harry and Harley should they be born alive, whereupon the twins defied every medical expectation. (The hospital said it could not comment on individual cases.)
Harry has cerebral palsy, and sometimes Crane wonders if he might have been spared brain injury had the doctors been more optimistic about his chances and consequently given him better antenatal care. Many neonatologists expect that, in future, there will be more legal action by bereaved parents who believe their babies should have been offered active care, but some said they would welcome the opportunity a court case affords for these life-and-death questions to be debated in public. “It shouldn’t be me, as a paediatrician, pronouncing life or death over a baby. It should be society’s decision,” Embleton told me.
In her research, Battersby found that many doctors were going further than the 2019 guidance recommended: they were attempting to resuscitate very small 22-week babies, instead of focusing on those with the best chance of survival. She is leading a team working on a minor update to the 2019 guidance that she hopes will encourage doctors to focus their efforts on those 22-weekers most likely to survive. “You can imagine for the nurses, especially, it takes a terrible toll to look after these babies each day knowing the chance of survival is so low. We all know when there’s a 22-weeker on the ward, because we have to look after each other,” Battersby said. “There are some babies where the nurses feel so morally challenged – they really feel the babies are suffering.”
Meanwhile, Battersby speaks regularly with neonatologists across the world to pool research. When she presents the UK figures, she thinks often about the conversations she’s had with her peers at the University of Iowa about the importance of optimism. She’s come to understand that how she presents her data, the narratives that emerge from it, can shift the survival rate. The stories we tell about babies born on the cusp of viability matter; they may even have life-or-death consequences.
* * *
In May, I travelled to Brighton, on the south coast, where Alice Smith and Jim Clack now live. It was the warmest weekend of the year so far, and the sky above was a brilliant blue. Smith met me at the station, a cool box slung over her arm. We stopped for an iced coffee, and Smith spoke of the anxiety she’d felt when Bodhi and Peggy first arrived home. The twins’ lives in hospital had been highly regimented and monitored, and it felt wonderful but also unsettling to suddenly be in sole charge of their care. She worried especially for Peggy, who kept turning her head to one side, an early indicator of cerebral palsy. But aside from being a bit clumsier than her brother, Peggy now shows no sign of having suffered any lasting damage from her brain bleed. Bodhi has a burn-like scar on his leg, and it remains the only visible evidence that he was born before he had even formed skin. In September, the twins started school.
I walked with Smith downhill to the playground where Clack was entertaining the children. They were spinning each other on the merry-go-round, shrieking with excitement. Both were dressed as their favourite characters from the cartoon PJ Masks. Peggy ran up to greet me in a blue mask. Bodhi, who is more reserved, watched me from behind Smith’s leg, his eyes just visible through the holes of his green mask. Clack and Smith both mentioned how much they had come to appreciate the luxury of stressing about the same things that most parents do. If the kids were playing up, Clack reminded himself of a time when he didn’t dare hope that his life might turn out like this. The family were off to join friends for a picnic on the beach, only they had to make a detour to pick up chips because the kids had eaten most of their food already. Smith slung one child on to each hip, leaving Clack to manoeuvre a double buggy, and they waved goodbye in the blazing sunshine and headed on towards the coast.
• Listen to our podcasts here and sign up to the long read weekly email here.
