“I heard the baby cry and the doctors talking. I knew something wasn’t right”

Sarah Health

There was a heart-stopping moment at the end of the last series of Call the Midwife when Maureen, a hapless expectant mother, says to the dashing Dr Turner, played by the writer Heidi Thomas’s real-life husband, Stephen McGann: “Every woman in the family way is going to be banging your door down for these. What’s the magic stuff in them again?”

“The tablets are known as Distaval,” says Turner. “And the magic ingredient is called thalidomide.” You could almost hear the nation catch its breath. Nine million UK viewers, plus huge swathes of America, are glued to Thomas’s saga involving wimples and midwifery. And thalidomide was trending on Twitter as the storyline left us on the brink of one of the biggest pharmaceutical disasters in history.

Thalidomide, a mild sedative developed in Germany and marketed in Britain under the brand name Distaval, was widely prescribed between 1958 and 1962 for coughs, colds and sleeplessness. Some mothers also took it for morning sickness, although most were spared its devastating effects: it was at its most lethal 20 to 40 days after conception, when eyes, ears and limbs are developing. Marjorie Wallace, an investigative journalist and founder of Sane, a mental-health charity, reported on the pharmaceutical disaster for this paper’s Insight team. She described the impact as “a cruel lottery, with some babies resembling jumbled jigsaws”. They were born with missing, or foreshortened, arms and legs; some were blind, deaf or suffered brain damage. Many were born with internal damage so severe they died at, or soon after, birth.

Thomas, marvellously head-girlish in cashmere and pearls, feels Call the Midwife has a thoroughly unjust reputation for being all about cake and babies. “It is so much more than that,” she thunders. “When thalidomide began to hove into view, I thought: right, I’m going to embrace this story and give it all the love it deserves. This is where we use everything we’ve learnt about research, about telling a human story that contains a great deal of scientific information, about CGI [computer-generated imagery]. And we do the best work we’ve ever done in our lives.”

life goes on Rhoda and her family in Call the Midwife, the latest episode of which portrays the trauma that families affected by thalidomide experienced — and the loveLife goes on: Rhoda and her family in Call the Midwife. The latest episode portrays the trauma that families affected by thalidomide experienced — and the love (BBC)

She is drawn to disability and anomaly — not just because, at 53, she is the same generation as thalidomide — but because her much-loved younger brother, David, was born with Down’s Syndrome and a heart condition so severe, his skin was permanently blue. “I spent my childhood pushing a wheelchair and every so often I would see another child pushing a wheelchair containing a sibling with no arms or legs. I loved David so devotedly, I did not question his role in the family or his place in the world, but I totally understand the social stigma of disability. One of the hallmarks of my childhood was this thudding shock when I saw people’s reaction to him.”

In the new series of Call the Midwife, a thalidomide baby is born to experienced mother Rhoda Mullucks. On the set, the extremely lifelike, limbless prosthetic, “Baby Susan”, was treated with a respect and dignity not afforded to the box of standard silicone newborns — the crew call them “jelly babies” and they’re often carried around by their ears. At the first script read-through, everyone, down to the burliest technician, cried.

“There was hardly a moment when she wasn’t being held,” says the make-up and hair designer Stella O’Farrell, who based Susan on an archive photograph of a thalidomide baby. During the birth scene (to be shown tonight on BBC1), Thomas cradled her in her arms, before handing her over to the actors to make her entry into the world.

The BBC objected to some scenes. “You can’t just make it up,” Thomas was told. She didn’t have to. It is almost impossible to overestimate the suffering involved. There are well-documented instances of medical staff leaving grossly deformed babies in sluices to die and of mothers who, left alone to discover limbless bodies, smothered their infants. There were suicides and numerous wrecked marriages as families struggled with secrecy, fear and blame.

Dr Ruth Blue, who has interviewed survivors for the Thalidomide Society’s oral-history project, says that, in every case, family background was the great determiner of future happiness. “In general, working-class thalidomiders seemed to do better than those born into middle-class families, who were more likely to hide them away.” Cases range from the son of a peer who was excluded from the rest of the family and brought up by nannies in one wing of the house, to the illegitimate son of a prostitute, brought up from birth in an institution, “who wouldn’t have been wanted even if he was able-bodied”.

Some mothers were so pulverised by guilt, they denied they ever took thalidomide. One didn’t tell her wheelchair-bound daughter she’d taken it until she was on her deathbed. All the parents were under huge pressure to commit their children to institutions — many went to Chailey Heritage School in Sussex, where they not only endured social exclusion, but physical and sexual abuse on a scale that at the time would have been difficult to imagine.

Thalidomide was officially withdrawn from the market in Britain in December 1961. But when Baby Susan is born at home to Rhoda in Poplar, no one has a clue what might have caused her injuries, so there is no complex backstory to explain. The script strips the thalidomide scandal down to one unforgettable image: a mother, cradling a baby with no legs and no arms. “Oh love,” the midwife sighs. “What a mess.”

BEATIE FREEMAN, 91, took two Distaval tablets during a bout of bronchitis when she was six weeks pregnant with her third child, Edward. He was born at home in Stevenage on August 8, 1959.
Two pills. That’s all it took. The midwife had a young nurse with her and when Eddie was born, she collapsed. I asked if I could see my baby and was told: “Not yet.” He went off in an ambulance to hospital with my husband following behind. They put me out in the end. When I came round, I had this feeling of rain on my face: it was my next-door neighbour, standing over me, crying.

The whole room was filled with flowers, but no one would tell me anything. Then my husband came back from the hospital and he said: “You can put all that stuff away” — he was referring to all the booties and mittens I’d knitted — “because he doesn’t have arms or legs.” I said: “But is he all right?” And he said: “Beatie, he’s lovely, he’s beautiful. He’s been christened Edward Denis.” And then we both cried.

He was born on the Saturday and they wouldn’t let me see him until the Tuesday. When I first looked on him, I pitied him. I thought: “Oh, this is not fair.” They’d rolled a nappy round him; they’d not even bothered to work out how to put it on properly, and that really got to me. I thought: “I just want to get him home.”

The doctor said, ‘Why don’t you leave him here and let nature take its course?’ I think they planned not to feed him, just let him fade away. Honestly, no one bothered

There were days after we got Ed home when I couldn’t stop crying. If I took him out in the pram, people would cross the road to avoid us. But I wouldn’t hide him away. My husband was a lovely man. He worked on the buses all his life and would have laid down in the road for Eddie. He said: “He’s going to be brought up normal, as best as we can.” And that’s how it went.

When Ed was about three, our family doctor knocked on the door. He showed me a box and said: “Have you ever taken these tablets?” I said: “Is this about Ed?” We’d been told all sorts — it was the environment, it was our genes — we didn’t know what to think. And he said: “I’m afraid so.”

We took him to Great Ormond Street Hospital and there were about five doctors looking at him, completely ignoring us. One said: “This is a Distaval baby.” And I went: “Oh really? He’s got a name now, has he?” That’s when my anger came out. I felt so very angry — with the [drug] company for letting it happen and with myself for taking the pills. I won’t say it was a tragedy, because I love him to bits, he’s been a joy to bring up, but Eddie knows I feel awful putting him in this position and I will carry the guilt until the day I die.”

Brave heart: Edward Freeman and his mum, Beatie. “People’s comments have upset her a lot more than me,” says EdwardBrave heart: Edward Freeman and his mum, Beatie. “People’s comments have upset her a lot more than me,” says Edward (Laura Pannack)

EDWARD FREEMAN, 56, lives in Swindon. He is divorced with two adult sons.
Mum and Dad fought to get me into a normal primary school and Mum used to push me a mile there and back, carrying my artificial legs. People’s comments have always upset her a lot more than me. I’m hard of hearing anyway and I don’t notice it. I had a great childhood.

When the bullying began in my teenage years, I fought back — verbally. I can be nasty. I phone Mum twice a day and I see her a couple of times a week. If I was born now, I might be able to work, but back then people like me didn’t get jobs. A lot of people think I’m a war veteran — it worries me that when we’ve all gone, the scandal will simply be wiped from history.

DR THELMA BATES OBE, 86, took three Distaval tablets she’d been given as a medical sample. Her first child, Annie, was born in Tasmania, where Bates was working as a cancer specialist, on December 11, 1961.
A fortnight before Annie was born, the health service sent every doctor a letter about thalidomide. It said all women who’d taken it were likely to give birth to “fetal monsters”. Now, doctors use that term to describe something pickled in a pot in a medical museum, so I was very, very worried. I had taken three pills when I was about six weeks pregnant. I was so excited about the pregnancy, I couldn’t sleep, and my husband, a surgeon, said: “I’ve got a free sample of a sedative in my bag…” So I took one, and the next night I took two more.

When the letter came, my husband said: “You’ve only taken three pills — how much harm could they do? But those were the most stressful two weeks of my life. I saw Annie the moment she was born, and she wasn’t a fetal monster, she was very sweet, very pretty, with little chicken wings instead of arms — to me, she looked like an angel.

Far from being distressed, I was thrilled. My husband was upset: he couldn’t stop thinking of all the things she wouldn’t be able to do, but I thought: “This is totally doable.” I was working as an oncologist and I took her to work in a papoose. Those were happy times. But she had other disabilities; Annie is blind in one eye and suffers from epilepsy. And like most thalidomiders, she’s prone to spinal and knee problems.

I wasn’t angry, I was too busy, I felt it was bad luck. Later on I had two boys — Richard and Charlie — and the children were 1, 3 and 4 when my husband and I parted. I worked in the cancer-research department of St Thomas’ Hospital and employed a nanny who’d worked at Chailey Heritage. I was determined Annie would have a normal life.

She has the highest IQ of the whole family, but the drugs she took for her epilepsy slowed her down. There was unkindness. Children didn’t want to hold her hand and the words “spastic creep” crept in. Part of the problem was ignorance — no one had a clue how to deal with disability. I feel guilt about lots of things — that I wasn’t at home 24 hours a day because I was furthering a career I loved — but I won’t feel guilt over taking those pills.

First born: Dr Thelma Bates and her daughter, Annie, a film-makerFirst born: Dr Thelma Bates and her daughter, Annie, a film-maker (Laura Pannack)

ANNIE BATES, 54, a film-maker from Bristol.
It’s been very tough on the mothers and they’ve been forgotten. I think my mother, being medical, felt much more guilt than she admits. Wherever I went as a child, other mothers would stop me and say: “I nearly took thalidomide.” And I’d think: “Is that a veiled criticism of my mum, who did take it?” A lot of us felt very loyal to our mothers.

Fifty years ago, if we went to the beach, the beach cleared; the mothers were always coming up with new strategies to make the day go on and stay cheerful. They had no resources, no advice. My mum taught me to accept myself completely. It was the rest of the world that had a problem.

“He won’t live beyond five”: Margaret Hogg and her son, David, now 55“He won’t live beyond five”: Margaret Hogg and her son, David, now 55 (Laura Pannack)

MARGARET HOGG, 73, gave birth to her first child, David, 55, on October 24, 1960, in hospital in Edinburgh.
I never had morning sickness. The only thing I had was a cough — the doctor gave me cough mixture [containing] thalidomide, but that was before I’d even missed a period.

I had David at 10.11pm on a Monday. I heard him cry and I heard the doctors and nurses talking and then they wrapped him up and took him away. I knew something wasn’t right. I kept saying: “I want my baby.” Finally, at 1.30pm on Tuesday afternoon, they brought him in. All I could see was his little face and I thought: “You’ve got something wrong with your left eye, but what’s all the fuss about?” So I unwrapped his shawl, and the first thing I saw was his foot, which was clubbed and turned out.

I said: “Oh, they’ve not put your arms in the sleeves of your gown.” So I reached to push them back in and I realised he had just three fingers sprouting from his wee shoulders. The shock was terrible. When the nurse came back in, I ranted and cried. Why was I not told? It was three or four days before they told me why David wouldn’t open his left eye — he has no eye, and barely any sight in his right. They advised me to leave him there and get on with my life.

The midwives were hard-faced, and matter-of-fact. There was no sympathy, no warmth. Rather than put David in the nursery with other babies, they left him in a tiny storeroom by himself. I wasn’t even allowed to pick him out of the cot if he cried.

We lived in a mining village outside Edinburgh. There was so much stigma and shame. If there was something wrong with your child, it was your fault. One of my friends said: “You do realise the rumours going round? David was born like this because you tried to get rid of him…” But I thought: “We’ll overcome it.”

All through his life, we were told: he won’t live beyond five; he won’t see his teens; he won’t walk; he won’t be able to feed himself. David has done all those things. We used to have a summer outing with other thalidomiders every year; as they grew older and had babies of their own, I’d watch them change their own babies’ nappies with their feet and I’d think: if only those doctors and nurses could see you now.”

Thalidomide in Britain

The first British thalidomide babies were born in January 1959, but it would be nearly three years before Grunenthal, the German drug company that developed the drug, acknowledged a connection. By then, 10,000 babies had been born worldwide. Only half of the 2,000 thalidomide babies born in the UK survived to their first birthday; of those, 467 are alive today.

The official line toed by the British Ministry of Health when the scandal broke was that the drug had been tested according to the “best standards of the time” and that the tragedy was somehow unavoidable. It took an investigation by The Sunday Times Insight team, under the editorship of Sir Harold Evans, to find that the disaster was by no means inevitable.

It was the direct result of the dishonesty and greed of a group of Grunenthal executives, who not only failed to ensure the drug was tested adequately, but who continued actively to market it long after its side effects had become clear. The story is told in the film Attacking the Devil, released in the UK this week. British thalidomiders, many of whom now live with chronic musculoskeletal damage and pain, continue their fight for compensation from the German government. Visit fiftyyearfight.org