We knew our babies would have Down’s — and keeping them has given us untold . joy
As an NHS screening test comes in which critics say will lead to more abortions, three mothers declare
LIKE any new mother, Nicola Sparrow is clearly besotted with her eight-month-old baby daughter. She adores her peachy skin, her giggles. The way she gnaws on her fat fists, and instinctively knows when a gummy smile is just the tonic her frazzled mummy needs.
Nicola just wishes everyone could see Lily the way she does. For Lily has Down’s syndrome. Adored as she is by her parents, Nicola knows many people see Lily as a problem — a drain on NHS resources and an unwelcome reminder of the lottery of birth.
Indeed, people were questioning her decision to continue with her pregnancy, right up until the day Lily was born. ‘I went into hospital at 37 weeks to be induced, and the consultant said: “I assume you want us to do everything we can for your baby? You can choose otherwise.”
‘I was in shock and so angry. I was about to have a much-wanted baby, and I was being asked if I was sure I wanted her to live!’
Lily was born in January this year. Her condition wasn’t a surprise. Six months earlier Nicola and her husband James, 33, a government officer, had paid £750 for a new, super-accurate, Down’s screening test — known as a Non-Invasive Prenatal Testing (or NIPT) at a private clinic. They did not want a traditional amniocentesis test which carries a small but very real risk of miscarriage.
But, says Nicola, 29, her daughter was no less wanted, which is why she is not alone in questioning the ethics of the decision to offer the NIPT test, which involves extracting the baby’s DNA from a sample of the mother’s blood and is said to be 99 per cent effective, to all pregnant women on the NHS.
Danish women have been routinely offered NIPT since 2006 and the effects have been striking: 98 per cent of women whose babies test positive for Down’s syndrome terminate their pregnancies. Could the same happen here?
This week Bridget Jones actress Sally Phillips, whose 12-year-old son Ollie has Down’s, added her weight to the debate, criticising such tests as dehumanising people with the condition.
She also questioned whether the Government is pursuing the test as a cost-saving measure by reducing the Down’s syndrome population. People with the condition have other health issues, such as heart problems, and there is the cost of care if they outlive their parents.
Sally, 46, who has two other children, said: ‘If we deny someone the chance to be born because we decide they won’t meet some measure of achievement, then we’ve failed to grasp what it means to be human.’
Writing in this newspaper, columnist Dominic Lawson, whose 21-year-old daughter Domenica has Down’s syndrome, also likened the new test to ‘State-sponsored eugenics’.
Currently, pregnant women are screened for Down’s and other conditions at their 12-week scan. This uses ultrasound to measure fluid at the back of the baby’s neck and a blood test. But it is only 85 per cent accurate. If the likelihood of Down’s, a genetic condition caused by an extra copy of a chromosome in the baby’s cells, is greater than 1 in 150, the mother is offered a further test, after 15 weeks — an amniocentesis.
A needle is inserted into the uterus to draw off some of the amniotic fluid, containing the unborn baby’s cells, which are then screened.
HOWEvER, only 65 per cent of women agree to this test, as it carries the risk (between 0.5 and 1 per cent) of miscarriage. This is why many medics welcome NIPT becoming universally available.
‘The true benefit of NIPT is the reduction in the number of preventable miscarriages caused by unnecessary amniocentesis tests,’ says Dr Samina Dornan, consultant sub-specialist in maternal foetal medicine from the MFM Royal Maternity Hospital in Belfast.
But campaigners say the Danish experience is evidence that Down’s would effectively be eradicated in the UK once the test has been widely introduced. And, they argue that this could herald a return to the dark days when such children were viewed with horror and revulsion.
Lynn Murray, from the campaign group Don’t Screen Us Out, says: ‘We are calling on the Government to halt the introduction of screening until there is a full ethical review, involving people with Down’s syndrome and their families. We must be consulted and our concerns addressed, rather than this being snuck through quietly.
‘Years ago, children with Down’s were brought up in institutions and never fulfilled their potential. I want to live in a diverse, interdependent society, where we accept that disability is not the end, the alternative is not healthy.’
Nicola, of Tadworth, Surrey, was told her baby had a one-in-99 chance of having Down’s after her 12-week scan. Fearing an amniocentesis and the risk of miscarriage, she paid for the NIPT, which confirmed the diagnosis.
Although initially upset, what really shocked Nicola was the attitude of medical staff who repeatedly offered condolences. ‘The consultant kept asking if we wanted a termination, as we were both young and could start again,’ she recalls. ‘This was my baby. She was planned and very much wanted. To end the pregnancy would be saying she wasn’t perfect enough.’
Nicola fears the new test may mean women feel pressured into abortions, unaware of the joy and love a baby with Down’s can bring. ‘We were often told what our baby wouldn’t do. But no test could have told us how strong, cheeky, determined, brave, funny and beautiful our baby would be,’ she says. It’s a sentiment Beth Butler, a photographer, from Corfe Mullen, Dorset, sympathises with. Going through with her pregnancy and giving birth to son Seth 12 months ago was, she says, the best decision she ever made. ‘He’s amazing, he brings so much joy. Everyone who meets him walks away with a fresh perspective on life.’ Beth, 25, still recoils at the callous phone call she received following her routine 12-week test. ‘The midwife told me my baby had a one-in-five chance of Down’s syndrome,’ she remembers. ‘I was offered a termination there and then, even though there was still an 80 per cent chance he’d be fine!’ Beth decided to have the NIPT test so ‘I knew what I was dealing with’. It was positive. ‘Again, I was offered a termination. The consultant said the child wouldn’t have a good life and would be a lot of stress for me. I told him I would not kill my child.’ Seth was born at 39 weeks. Despite
surgery to close a hole in his heart at nine weeks, he’s now thriving — with dusty blonde hair and green eyes — a picture of good health.
Sarah Costerton, 42, a former palliative care nurse, insists an extra chromosome has never hampered her three-year-old daughter Beth’s zest for life or the joy she brings to her family, including dad, David, 40, and sister, Hannah, six.
‘My heart is permanently swollen with pride for both my girls. Beth tries so hard to do things that others take for granted but she keeps going until she’s done it. I love it that she screams when we have to leave the park, I love it when she empties the bath water over the side! I love these things because they are so normal.’
Sarah, from Sutton, Surrey, decided against a NIPT or amniocentisis test when told there was a one-in-two chance her baby would have Down’s, knowing she would keep her baby regardless. yet, the assumption she would have an abortion — and the pressure to do so, she describes as ‘callous’.
‘A genetic counsellor showed us into what can only be described as a broom cupboard. She was clutching a Post-it note and I could read: “One-in-two chance Down’s. Want to keep it?’’ I couldn’t believe the lack of dignity, empathy and care.’
SARAH and David, who runs his own chimney sweep business, were left to come to terms with the diagnosis alone. ‘I cried a lot and grieved for the baby I wasn’t going to have,’ admits Sarah.
Despite needing bowel surgery and open-heart surgery in her first few months of life, Beth is thriving and her family wouldn’t change a thing. ‘We have felt tired, worried, unsure, but these feelings are normal for any parent,’ says Sarah.
‘It is easy to see why people might chose a termination and avoid some of the problems. However, I hope people are also aware of what they could be saying goodbye to.
‘We have no regrets and love the life we have. This new test is not about cure, but extermination based on disability. We can do so much for people with disabilities now, understanding and therapies have developed that can help people do things that would not have been possible before. Are we about to throw all that hard work away?’
Katie Meade, 29, a secondary school teacher, is grateful for the NIPT test for different reasons.
She was 12 weeks pregnant with her first child when she went for a routine scan in March 2015. ‘I was so excited,’ recalls Katie who lives with husband Jason, 28, an engineer, in Basingstoke, Hants.
‘But after the scan, we were shown into another room, and a midwife explained the baby’s neck measurements were higher than normal, meaning there was a chance of Down’s, and we should “consider our options”.’
Desperate for a definitive diagnosis, but unwilling to risk an amniocentesis, the couple paid to have a NIPT. Two weeks later, the clinic called to say the test was negative — their baby didn’t have Down’s.
‘I don’t know what we’d have done if it had been positive,’ admits Katie. Neither does she like to think about what would have happened if she hadn’t had the money for the test. If they had, indeed ‘considered their options’, she wouldn’t have her beautiful, 11-month daughter, Brooke, today.
Of course, there are plenty of women who do not go through with their pregnancies once they discover their babies may have Down’s. Ninety per cent of babies who are prenatally diagnosed are aborted, according to figures from The National Down Syndrome Cytogenetic Register.
Among them was Kelly Jones, who says her decision to abort her Down’s baby in 2004 was anything but trivial. The 32-year-old, and her husband, from Newcastle upon Tyne, both come from Catholic families strongly opposed to abortion, so they had to keep their decision a secret.
‘It was a heartbreaking choice,’ she says. But having witnessed Down’s at first hand, Kelly didn’t feel she could cope with the responsibility. ‘My aunt had a baby with Down’s and we saw her go from being the life and soul of the party to a shell of a woman, run into the ground, every hospital trip draining her more and more.’
Recalling her own termination, Kelly says: ‘The consultants and midwives were lovely, totally nonbiased. I took some tablets and my husband and I were ushered into a side room, where I went into labour. I’d like to say I felt sad or guilty, but I didn’t, I felt relief.’
Kelly now has two children, aged seven and ten. She fully supports NIPT being universally available. ‘It may sound heartless, but I’ve never regretted my decision.
‘I believe women have the right to abortion and better screening will give them the information they need to make the decision.’
While Kelly, and many women like her, may choose to terminate their pregnancies once they discover their babies have Down’s syndrome, the outlook for such children has never been better.
Advances in care and understanding mean that most now live into their 60s, and lead full, active lives.
Many hold down jobs and relationships, and live semi-independent lives. Some have achieved fame including actress Sarah Gordy, who starred in Call The Midwife, Sam Barnard, who has appeared in The Suspicions Of Mr Whicher and other TV programmes, and Seb White, who stole the limelight as a little boy in Marks & Spencer’s Christmas TV advert in 2012.
It prompts the question: is it up to society to dictate who has a right to be born? SoMe names have been changed.