The Sunday Times - UK (2022-06-05)

24 The Sunday Times June 5, 2022

NEWS REVIEW

including a lack of money for the research (“not a brass razoo”, she says), meaning she had to crowdfund. Getting her studies approved was “hellishly hard, due to the sensitivity around using foren- sic databases”. And then once the gov- ernance and ethics hurdles were cleared, Covid-19 struck. Harrington says that a lot more research is needed. The study was small and needs to be validated, and because the marker is not precise, she believes that further research might find a more accurate way of testing. “This is the first study to see something in children that differentiates them prior to death from children who don’t die,” she says. “That’s a massive deal, but we don’t know enough yet.” Harrington is an optimist, though. She has set an ambitious timetable, wanting to be able to screen babies and offer “some sort of intervention” within five years. All of the recommendations — from the NHS and the charity the Lullaby Trust — to avoid Sids still stand, though: put your baby down to sleep on their back with their feet touching the end of the cot and their head uncovered; use a firm mat- tress; do not smoke around the baby; breastfeeding offers some protection; have your baby in your room for the first six months of their life; and keep them out of the parental bed. Since the research has been reported, she has received hundreds of emails from parents whose babies died from Sids. “Some of these emails are really sad, saying that this is the first time in 20 years that they haven’t felt guilty; for one, it was 40 years,” she says. “Your beautiful child was so well and happy. How could they just go to sleep and not wake up? So you believe there is something you missed.” She hopes that she has given these parents some solace: “There was something wrong with their child and no one knew. It’s like leukaemia 150 years ago: you could see somebody slowly getting sick, but you didn’t know that they had leukaemia because we didn’t know about blood cancers. This is also a hidden disorder.” For Harrington, the path back to find- ing any happiness after Damien’s death took time. “When I was back at university, there was a beautiful walk to the medical building, and I looked up and saw the light coming through the trees and I had a moment of joy, and that was the moment when I thought: ‘It’s gonna be okay, I’ll get back’,” she says. “I’ve got two grandchildren now, the kids are happy and I’ve done this work.” Where does her drive come from? She smiles. “I don’t know. Lots of my friends are now winding down, whereas I’ve just found a whole new thing I’ve got to do.” Search for Damien’s Legacy at mycause.com.au to support Sids research

Even kind medics said: ‘You have to move on’

Dr Carmel Harrington in her lab at Westmead children’s hospital, Sydney, and, above, with Damien, who died before he was two

In the aftermath of Damien’s death, Harrington encountered “deeply patro- nising attitudes” towards grieving mothers from some doctors. Even kind medical staff told her: “It’s just a tragedy, you have to move on — go and have more children.” But Harrington, who was a lawyer, was determined to understand what had happened to her child. “I was disciplined — parents who’ve lost a child or people who’ve gone through severe trauma almost lose their embarrassment and are quite shameless in trying to find informa- tion,” she says. “And I remember promis- ing my son that I wouldn’t leave any stone unturned to find out why he died.” She had studied biochemistry for her undergraduate degree, and returned to university to do a PhD on the functioning of the autonomic nervous system, the control system that regulates involuntary bodily functions, such as the heartbeat and respiration. She turned her life upside down — “I became an impover- ished student, a single mum with two kids” — in an attempt to prove her theory: that the problem for babies who die from Sids is one of arousal, rather than exclu- sively a breathing issue. “Damien was found face down, but there’s no way in the world that he couldn’t have lifted his head or moved or

I had to know

why cot death

took my child

rolled,” she argues. “He was walking and running. So the idea that he just suffo- cated, it didn’t make sense ... Very early in life, a child can lift their head and cry out. Arousal responses are strong — that’s what allows our species to survive. [With Sids] yes, the child probably does suffo- cate — but a child is suffocating because they’ve not got the appropriate arousal responses. They’re not waking up.” Although she emphasises that much more research is needed, Harrington believes that the arousal system in babies who die from Sids has not matured prop- erly. What her research found, using the heel-prick blood sample taken at birth, is that those children have less activity of an enzyme, butyrylcholinesterase (BCHE), at birth than healthy newborns did, opening the door to a possible test for susceptibility to the syndrome. Harrington sees this work — which remains unfinished — as Damien’s legacy. It has been a long, difficult path. Broke after her PhD, she left research for about six years, and made a living through talks, workshops and writing books on sleep. She needed a job that paid the bills, so she could then restart her research on the side. In that hiatus, understanding of Sids improved significantly. There were still barriers, though,

When a lawyer’s son died in the night 31 years ago, she retrained as a sleep expert — and has now made a research breakthrough, she tells Rosamund Urwin

SAM RUTTYN

T

hree days before her twins’ second birthday, Dr Carmel Harrington finally had a night of uninterrupted sleep. While her son Damien appeared to be healthy, his sister Charlotte had had medical problems since birth that meant Har- rington was up beside their cots two or three times a night, month after month. “I remember in the morning saying to my husband: ‘Oh my gosh, that was the best night — Charlotte didn’t disturb me’,” she recalls. But when she entered the twins’ room, she found Damien cold in his cot. He wasn’t breathing and his heart had stopped. Damien died in 1991, but the grief is still etched on Harrington’s face as she speaks. “You can’t think for ages, you can’t even take a breath,” she says. “None of it made sense. I wondered if he was poisoned. And then we got the autopsy result back which said that there was nothing wrong; it was just — just! — cot death.” Cot death, also known as sudden infant death syndrome (Sids), refers to a sudden, unexplained death of a baby, usually during sleep. It affects about 200 babies a year in the UK, according to the NHS. That number has fallen sharply in the past 30 years, thanks in part to campaign- ers including the broadcaster Anne Dia- mond, now 67, whose son, Sebastian, died from Sids in 1991, aged 4 months. Harrington, who is Australian and lives in Sydney, has been on her own 30-year crusade to prevent other parents across the world suffering like she has, research- ing Sids in the hope of preventing future deaths. Last month, she and researchers at the Children’s Hospital at Westmead in New South Wales had a breakthrough, identifying an enzyme that could poten- tially be used as a biological marker to identify babies at heightened risk of Sids. This does not mean that they have found the cause of the syndrome, but it does suggest that babies affected by it are different from other infants. Harrington describes Damien as a “gorgeous” toddler. She has an elder son, Alexander, who is two years older than the twins, and while he and Charlotte were “rambunctious kids”, Damien was more gentle: “He would always be hand- ing his toys back to [his siblings], giving them what they wanted.” He was significantly older than most infants who die from Sids, which usually affects babies in the first six months of life. Harrington wondered afterwards if Charlotte effec- tively kept Damien alive, as her frequent wakings meant that Harrington would regularly move her son from lying on his front to a safer position on his back: “I don’t think he would have lived as long otherwise.” His death took a huge toll on their family, and cost Harrington her marriage (she has since remarried). “It’s like Humpty Dumpty,” she says. “You are shattered into a thousand pieces, and the thousand pieces don’t go back in the same manner. So often, relationships break down because the two people put themselves back together in different ways.” Charlotte and Alexander suffered too. Charlotte, who is now an intensive care doctor, was an uncommunicative toddler, but had a twin language that only she and Damien understood. “She knew he wasn’t in the cot next to her, and we didn’t want to put the cot away,” Harring- ton recalls. Alexander, who is now a para- medic, had been teaching his little brother to talk and asked his parents: “Who am I going to teach to speak now?” The family could no longer bear to eat at the kitchen table, conscious there was a space for Damien, so got rid of it and ate meals in the more formal dining room.

lard melted over a camping stove and then letting it cool so that it is sealed, “a bit like cheese in wax”. Today Price lives with his girlfriend, Ida, in a rural cabin in Sweden, where he is more than used to an unreliable electricity supply. One thing he’s learnt is that it’s worth grabbing the ice cream as soon as the freezer goes off: “It will last all day in a Thermos,” Price says — an important tip for lifting spirits after hours without power. “Being cold and bored for 48 to 72 hours is depressing, but after that is when you really need a plan — you really need to keep morale up,” says Price, who warns that you can’t rely on board games. He’s found that his children are best occupied by hammering nails into a tree stump. It’s the little things. Finally, we might be forced to learn to live without our phones. Battery packs will last only so long, and solar chargers are a bit ambitious in an English winter. There is an emergency option: “Most people don’t realise that landlines will keep working even if you have a power cut,” he says — although they have to be the old-school corded type, which can keep running off power from the phone lines when the house goes dark. With a prepper’s optimism Price sees the silver lining of a period without power: it could, he says, finally be the moment you get to know your neighbours.

what to eat if fridges are on the blink or energy is rationed. Packets of freeze- dried food (about £7 each) just need a splash of water before being heated over a camping stove — if you’ve been quick enough to nab one. It’s tasty, assures McInally-Johnston, even if they come in ominous flavours such as “meat soup”. For those who truly believe this is the heralding of the apocalypse, Prepper’s Paradise sells a ten-year supply of emergency freeze- dried food for £18,000. Joe Price, 35, a wilderness survival instructor from Dublin, got into prepping several years ago after long stretches on the road as a heavy machinery driver. For Price, it wasn’t the cult of the survivalist that inspired him to go off grid, but his grandmother. “It’s that blitz spirit of using your initiative,” he says. Price believes in building up a prepper’s pantry slowly over time, by setting aside £10 in each weekly shop for food that won’t go off and is high in energy. “When you’re prepping you not only want food to last long, but you also want all the food your personal trainer tells you to avoid: chocolate bars, anything in oil and saturated fat,” Price explains. He also recommends Polish stores for their range of pickled and preserved goods as well as almond milk that won’t go off if your fridge does. If meat is a must, it can be preserved by putting it in

broadcasting at 10.30pm each night. Fifty years later, most central heating systems have electric controls, as does underfloor heating. Many homes have electric cookers and showers; we rely on our washing machines and dishwashers, wi-fi plugs into the wall as do phone and laptop chargers, and fridges and freezers require a 24/7 power supply. The prospect of our homes running out of juice has driven a surge in demand in the prepper community. One online shop, Prepper’s Paradise, which has a range of products from freeze- dried food to water filtration systems, has been stripped almost bare in recent months, says owner Sharyn McInally- Johnston. The most sought-after supplies have been heavy-duty sleeping bags, gas stoves and solar chargers. The bottles of propane she imports, some from Russia, are now either prohibitively expensive or unavailable, says McInally-Johnston, 36,

Power cuts? Best get prepping now

Apocalypse ‘preppers’ who hoard tins and candles could have the last laugh if there are blackouts this winter. It’s time to fill your store cupboard, they advise Madeleine Spence

W

hen the pandemic began and the prophecies of food shortages and social breakdown started, one group looked as if they were about to have the last laugh. “Preppers” are those who prepare for the worst with cellars full of tinned goods and boreholes in their back gardens — and are often dismissed as apocalypse crackpots. Suddenly they seemed sensible, and it was the rest of us left scrabbling for the last pack of loo roll in Sainsbury’s who looked mad. Once the worst of the pandemic was over, however, we dismissed the preppers once more. Then, last week, the government’s “reasonable” worst-case scenario for this winter was published, and it has a whiff of Doomsday about it, involving power cuts and electricity rationing for millions. Is the cult of the well- prepared finally to be vindicated? When industrial action by miners cut coal supplies in the 1970s, there were blackouts across Britain. People were advised to keep non-essential lights switched off and the BBC and ITV stopped

Candles and layers of clothing will soon become necessities

who lives with her ex-army husband and four children in Helensburgh, Dunbartonshire. Lack of fuel also renders well-planned power generators useless. As a result she has now changed tack when customers ask her how to prepare for blackouts: “My advice has completely changed because it’s no longer sustainable to try to source these items.” Now she’s advising customers to prepare the old-fashioned way: “We’re talking about going way back to the 1940s and the 1950s.” That means the whole family sleeping in one room to conserve warmth, sealing draughts in windows and doors for better insulation and learning how to layer clothing. Other tips for keeping warm include putting tealights in upside-down terracotta pots and

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Store meat in melted lard

Sheryl said

‘lean in’ and

women

everywhere

stressed out

titled “Sandberg left single mothers behind”, the author Susan Faludi condemned Sandberg for upholding a “power structure ... built to cement the power of (some) men, and on the backs of (most) women”. Sandberg subsequently conceded there was some substance to these criticisms. When her husband, Dave Goldberg, died suddenly in 2015, she wrote in a widely shared Facebook post of the pain of single motherhood: “Before, I did not quite get it ... Some people felt that I did not spend enough time writing about the difficulties women face when they have an unsupportive partner or no partner at all. They were right.” The truth is that some jobs — Facebook chief operating officer being one of them — demand a wife. That wife need not necessarily be female, and at a pinch a rotating cast of PAs, nannies and cleaners can do the job (for a hefty fee). But the sort of job that demands frequent travel, odd hours, and 70- hour weeks isn’t possible by putting the kids in nursery and hoping for the best, as most working parents do. When women in these jobs have children, they often choose to take a step back from their careers, and some of them never return. It’s this scarcity of women at the top of professional hierarchies

that is primarily responsible for the gender pay gap — which is actually a motherhood pay gap. Female workers in their twenties outearn their male colleagues right up until they have their first child, at which point mums are faced with the practical problem of juggling work and childcare, and the emotional problem of maternal guilt. As the mother of a one- year-old, I can attest to the fact that about 70 per cent of my brain power at any one moment is devoted to worrying about childcare, while the other 30 per cent is occupied with worrying about whether my son should be in childcare at all. The work of the home is low status and often invisible, but it is just as important as the work of the office, if not more so. And someone has to do it. Repeating affirming mantras and believing in yourself won’t cut it. In reality, girlbosses — and increasingly working fathers trying to be attentive dads — must battle an impossible set of contradictory demands on their time and energy, which unless they have a (male or female) “wife” at home will inevitably mean choosing between parenthood and a high-flying career. Sandberg likes to say “in the future, there will be no female leaders. There will just be leaders”. Will those leaders “have it all”, though? I doubt it. The Case Against the Sexual Revolution, by Louise Perry, is published by Polity (£14.99) She knew the damage Facebook was causing, Roger McNamee, sundaytimes. co.uk

The Facebook ‘girlboss’ is

stepping down. Her bestselling

workplace manual was an

inspiration to some — but a curse

for others, says Louise Perry

S

heryl Sandberg has a lot
of metaphorical
trophies in her
downstairs loo. At the
age of 44, she became
one of the youngest
billionaires and is now, at 52,
reported to be worth
$1.7 billion. As chief operating
officer of Facebook and later
its parent company, Meta, she
has spent 14 years as the most
powerful women in Silicon
Valley — which means she was
one of the most powerful
women in the world.
Her first book sold more
than two million copies and
put Sandberg on the cover of
Time magazine. She is a
mother of two and engaged to
be married this summer to
Tom Bernthal, chief executive
of a marketing agency.
Last week she announced
her decision to leave Meta to
“write the next chapter of her
life”. I would be astonished if
this didn’t involve writing
more book chapters, too.
But outside the world of
tech, Sandberg is known less
for these achievements than
for two much-lauded and
then much-hated words:
lean in. This was the title of
the book she published in
2013 that became a bible for
what would become known
as “girlboss feminism”. It’s a
concept that launched a
thousand cringey ad
campaigns, selling everything
from trainers to tampons
under the banner of
empowerment — and one that
left many women and
mothers feeling like anxious,
flailing failures.
“I don’t want to lean in,”
quips the stand-up comedian
Ali Wong in her Netflix
special. “I want to lie down.”
Sandberg wrote for an
audience of women she
assumed were just as
ambitious as she was. The
response suggests that a lot of
us just... aren’t.
The girlboss is a force of
nature. She drums her
perfect manicure on the
boardroom table, stares
down chauvinistic bores with
her flawless smoky eye, and
overcomes any and all
adversity with the pure
undiluted power of her
personality. Aspiring girl
bosses must, said Sandberg,
“lean in” if they want to get
ahead, since the path to
success is open to anyone
with enough grit.
But despite (or perhaps
because of ) all this attention,
the “lean in” slogan has also
been much mocked by those
who dislike Sandberg and her
message. There are not one
but three books called Lean
Out, all of which take aim at
Sandberg. When she
announced her resignation
this week, “lean out” was the
favourite phrase of every wag
with a Twitter account.
By placing all her emphasis
on individual behaviour,
Sandberg was, say her critics,
ignoring the structural
barriers to women’s
professional success,
particularly those affecting
poor women and single
mothers. The American
feminist bell hooks compared
Sandberg to a used car
salesman, who was selling
women a clapped-out
ideological product disguised
by corporate gloss. And in a
particularly direct article

female leaders. The be leaders”. Will tho leaders “have it all” doubt it. The Case Against the Revoluution, by Louis is published b (£14.99) She dam Fac was c Roge McN sund co.uk

I don’t want to lean in. I want to lie down

Sandberg’s book became a
bible for “girlboss feminism”
placing them around the
room, and that it’s time to
reinstate the cupboard full of
candles. Those with outdoor
fire pits and fireplaces can
warm stones in them and
bring these inside in metal
trays to heat the air. Just make
sure you have a supply of
batteries for your smoke
alarm, in case of accident. No
water should be wasted from
a kettle boiled; it should go
into hot water bottles and
Thermos flasks for when the
electricity next cuts out.
The next consideration in
the prepper’s handbook is

NICOLETAIONESCU/GETTY IMAGES

The Sunday Times - UK (2022-06-05)

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