A world without Down’s Syndrome children?
Published by The Mail on Sunday (4th February, 2018)
Watching Erica Gaarn-Larsen playing with her six-year-old son Philip in their third-floor flat in central Copenhagen, it is hard to believe she might so easily have aborted her child.
He is a boisterous bundle of flame-haired energy, full of smiles as he shifts a pile of play mats around the living room. Sometimes he stops to wave, or simply stare at the strange British visitor, while his mother looks on with maternal devotion.
But Gaarn-Larsen, 47, admits that if scans had picked up her baby had Down’s syndrome, she might have terminated the pregnancy. ‘I did not want a child with disability,’ she concedes.
‘I thought my life would be changed and maybe even ruined. I had no real knowledge, just the feeling this would be something terrible.’
She only discovered the second of her three children had a learning disability after his birth. ‘I had 24 hours of going through hell thinking, “Why did this happen to me?” ’ she says. ‘But then I looked at my lovely little baby and decided we could handle this. Now I can think of 100 things worse in life than having a disabled child.’
The arrival of a child with Down’s syndrome is an increasing rarity in Denmark. There were 80 born in 1999 – but by 2016 the number had fallen to just 24.
Of those, only four were born after positive pre-natal diagnosis. The Scandinavian nation has the world’s highest termination rate in such cases, with 98 per cent detected in the womb aborted – though Britain is not far behind with 90 per cent.
And with the arrival of more accurate and less risky testing, these birth rates are likely to fall further. Denmark now faces the real possibility that it could become the first nation to wipe out Down’s syndrome altogether. And others are likely to follow.
Thanks to advances in new testing techniques, it is likely that more and more Down’s pregnancies in Britain are likely to be terminated.
A new blood test – Non-Invasive Prenatal Testing – which offers simpler and more accurate screening for Down’s and some other abnormalities is being rolled out across the NHS this year.
It has provoked the Church of England to warn the existence of people with Down’s syndrome is ‘under question’. Its ruling General Synod will discuss the issue in a landmark debate next Saturday.
Zealots such as the biologist Richard Dawkins claim it is ‘immoral’ to bring such children into the world if scientific advances offer choice. ‘Abort it and try again,’ he told one woman struggling with the issue.
Other academics have even raised the appalling spectre of terminating babies with Down’s syndrome after birth, arguing they might be happy individuals but are an ‘unbearable burden’ on families and state resources.
As the parent of a child with severe and multiple disabilities, I find this obsessive quest for perfection to be profoundly disturbing.
For if people with Down’s are so easily jettisoned, what signal does this send to wider society? And what do such implications of inferiority say about the value of people such as my daughter with more severe conditions?
So I travelled to Denmark to discover for myself how attitudes have hardened and the effect it is having on the families remaining who are still raising children with Down’s.
Denmark is a decent, open and sophisticated nation. Yet its experience shows we are sliding into a new age of eugenics with scarcely a murmur of dissent and minimal discussion of ethics, morality or the complex meaning of humanity.
‘We are moving towards eliminating Down’s syndrome and some other disabilities,’ says John Brodersen, professor in public health at the University of Copenhagen. ‘There’s no doubt this is eugenics.’
Down’s syndrome, first described by a British doctor in 1866, affects six million people worldwide. In recent decades the life expectancy of sufferers has more than doubled, with many getting married, holding jobs and enjoying full lives.
Research has found these people, who are born with an extra 21st chromosome, to be among the most satisfied in society with their lives and looks, bringing joy to family and friends.
Yet over the past three years, only eight of the 407 Danish cases detected in pre-natal screening survived to birth. Another 83 children with the syndrome were born after false-negatives, such as Philip, or because their parents rejected testing.
Brodersen blames the medical profession for painting too stark a picture for parents as they confront the prospect of life with a disabled child. As I know all too well, this is a disturbing moment as your dreams suddenly dissolve.
‘Parents want a perfect child and the medical profession is encouraging them,’ he says. ‘They present a very black and white case, but even within Down’s syndrome people are different. Yet they are being seen as monsters, far from human beings.’
He argues that as numbers plummet, tolerance declines. ‘They are more likely to be regarded as aliens,’ he says. ‘Today when people meet a child with such a disability they wonder why was it not terminated or was there a technical mistake.’
This is tough moral terrain. I believe women should have full right to choose on early abortion – just as photographer Line Holm did last year after receiving confirmation that her 12-week-old foetus had Down’s syndrome.
‘I was in shock and crying but I knew right away I was going to have an abortion,’ says Holm, 40, a mother of two boys from Viborg in Jutland.
Unlike many people, she had some insight, having worked on a documentary about people with the condition. ‘I knew it would make a big impact on my family for the rest of our lives and on my children when I am no longer here.’
Holm has no regrets. Yet where is the debate over the collective impact of rational individual decisions as they weed out people that add to the diversity of humankind?
Denmark is in the vanguard of this brave new world since it has a liberal approach to abortion, partly due to historically high female participation in the workplace. Polls show majority support for terminating foetuses indicating Down’s syndrome.
Any woman in Denmark can terminate a pregnancy during the first 12 weeks, then for the next ten weeks if agreed by special regional boards that there is a chance of serious mental or physical disorder, which is deigned to include Down’s syndrome.
Ann Tabor, professor of foetal medicine at Rigshospitalet hospital in Copenhagen, counsels many couples in this situation. ‘Most are just so sad and angry that something is not normal,’ she says.
‘They come in expecting a scan picture for the fridge and suddenly they do not have the perfect child they expected.
‘Most parents want a normal child. We know the IQ [of Down’s children] is considerably less than that of a normal child. They are not such a big burden when small but can be difficult as teenagers and beyond. They do not have such a big impact on society.’
She denies, however, high termination rates mean people with Down’s syndrome are less valued – although she accepts that in a ‘perfectionist society’ there is less space than in the past for people displaying such differences.
Eugenics is now a shamed concept. A century ago, academics and writers debated ideas of eliminating human ‘deficiencies’, theories that led with dreadful logic to the Nazi death camps.
Yet almost three decades ago, Troy Duster, a far-sighted New York sociologist, warned that science and genetics were unleashing a new era of eugenics through ‘screens, treatments and therapies’. Now this age is arriving.
When talk of mass testing began in Denmark towards the end of the last century, there were even callous suggestions that it was cheaper to offer screening since it reduced the numbers needing care.
One senior doctor openly talked to me about ‘cost-effectiveness’ of screening, while others fear this still underpins the issue for politicians, including Lillian Bondo, head of the Danish Midwives Association, whose own sister Ida had Down’s syndrome.
Bondo admits to being conflicted over this issue, agreeing that most parents ‘instantly’ seek termination when faced with a Down’s baby and readily accepting that medical advances are improving lives.
But she fears we are seeing more children born with severe disabilities, especially when very premature babies are kept alive despite complications, while minor conditions such as Down’s are being ‘removed’ by medicine.
‘Society is creating some new handicaps while trying to root out others,’ she says. ‘Perhaps we should establish a pain threshold based on suffering?’
She wants more recognition that people with Down’s lead valuable lives. ‘But when you are having only 25 people born each year, not 150, this means there is much less chance to meet such a child,’ she says.
A few families with a Down’s syndrome child, feeling unwelcome in Denmark, have even fled to Norway. ‘The signal being sent is that society does not want people with Down’s syndrome,’ says Lars Brustad, secretary of the Norwegian Network for Down Syndrome.
‘In my opinion this is a horror story. It is very difficult for parents like me to understand. There is no reason to offer these abortions when people with Down’s syndrome can live good lives.’
Sadly, this issue reflects the lingering hostility towards people who are not ‘normal’. And such fears are exacerbated by the crushing fight for support that faces parents of disabled children in countries such as Britain and Denmark.
Yet Brustad, a retired banker, believes the Danes are only being more open than other nations about this dawn of a new eugenics.
Before leaving Copenhagen I chatted with psychologist Line Natascha Larsen, 41, whose seven-year-old son August has Down’s.
Larsen admits she and her husband Max were sad when their child was diagnosed but she learned a key lesson from an adult with the condition. ‘He told me to believe in my child,’ she says. ‘Don’t protect him but help him achieve everything he can.’
She has done just that. ‘August is so warm and loving, very funny and living in the present,’ says Larsen.‘Yet those people seen as a bit different can make some others uncomfortable instead of being embraced for enriching society.
‘We going to make our world so much more boring with this quest for perfection.’
She is right. But will we learn to appreciate the wealth of human diversity before it is too late?