Down's syndrome: Breaking the news

There's no easy way to hear that your baby has Down's syndrome. But there's a lot doctors could learn about breaking the news.

David Betts and his wife Cheryl didn't even have time sit down in the paediatrician's office before he had told them: "Your daughter has Down's syndrome." As they stood in shock, they waited for a word of sympathy, some information about the condition or a more detailed prognosis.

None came. "We left his office and went to sit outside, thinking someone would come along soon and tell us something," David recalls. "But no one talked to us, so we got up and left. We were totally devastated and didn't know what to do, so we went home and decided to read up on it."

Worse was to come when the couple, from Lowestoft, Suffolk, took their baby to a paediatrician at the local hospital. "She had very Victorian attitudes and just kept referring to my daughter as a mongol," David says. "She said, 'Well, she'll never be a brain surgeon or a ballerina,' and seemed to imply that she would be better off in an institution."

Nine years on, and Aymee Betts is a happy, healthy girl who swims for the local club, goes to a mainstream school and enjoys gymnastics, trampolining and drama classes. "She is fantastic," says her proud father. "She's invited to all the children's parties and she reads like a speed reader." But he has never forgotten how he and his wife were treated by medical professionals.

Sadly, their experience is not unique. A report by the Down's Syndrome Association (DSA), due to be published next week, shows that many doctors still get it wrong in communicating with parents.

Two-thirds of Down's cases are now picked up by pre-natal testing, so parents are informed at about the 20-week stage. The DSA survey found that two-thirds of parents were given their test results over the phone; many were on their own, some were at work. Less than half were given any written information about Down's, and only half were told about local support groups.

This may explain why 92 per cent of parents opt for a termination when told their unborn child has Down's. The report highlights the case of Lisa Green, advised to have an abortion at 35 weeks after tests showed her baby had Down's. She refused, and her son is a happy, healthy toddler despite having the condition.

Because of the risk of miscarriage associated with the amniocentesis procedure, some parents opt not to have the test and only make the discovery at birth. They too encounter a lack of care and counselling. While the DSA survey found that more health professionals are getting it right, 37 per cent of couples were given no written information at diagnosis. Four out of 10 said they were given no practical support, such as details of local groups.

The DSA report makes several recommendations, including asking parents how they want to be told the results of tests and ensuring that every maternity unit has a local volunteer who has a child with Down's syndrome who can be contacted.

Marie Benton of the association says: "Things have got a lot better in recent years and some cases are really good examples of best practice, but parents are still not being given all the information they need.

"The way in which parents are told can make all the difference to the decisions they make pre-natally and how they cope with a diagnosis after birth."

Patrick O'Brien, consultant obstetrician at University College Hospital in London, agrees. But he says the range of problems experienced by children born with Down's can make it difficult to make a balanced explanation to parents who are already in shock. "It can go from children who have very mild problems to those with severe mental and physical problems," he said. "Pre-natal scans can give an idea of the physical defects but we can never tell how badly a child is going to be affected mentally. You can tell parents 10 positive things, but the one negative thing is, understandably, the one that sticks in their heads.

"I do think most hospitals now have very good counselling and information for parents, and junior doctors now get a lot more training in this area than they used to."

He said many parents are given the results of pre-natal tests over the phone simply because they are desperate to know the outcome as soon as possible. "It can be even worse for them if we say we have the results, then they have to drive to the hospital, wait and come in to hear them. Even if they are told over the phone, we now make sure a follow-up appointment is arranged as soon as possible to discuss in great detail what the diagnosis means."

Benton says that one problem with the way in which parents are dealt with post-natally is that fewer children are born with the syndrome now. "Many maternity units may see only one or two cases a year, so they are unsure how to cope with the parents. Sometimes staff actually go in the opposite direction from negativity and tell parents that they have been 'blessed'. It may be from the best of intentions, but that doesn't help either. Training can help, but what we have found is that a lot of parents just want to talk to someone else in the same position."

David Betts agrees. "The only experience I had of Down's syndrome before Aymee was born was my cousin, who had the condition very severely," he says. "She ended up in an institution. When we got such negativity from the doctors over Aymee I began to feel very down, but then I talked to other parents and we began to see things didn't have to be so bad."

Aymee's future still concerns him. "I want her to be able to live in the community, but supported," he says. "The problem is that councils just don't have the resources or the capacity to do that any more. We need to make sure the provision is there."

What does the future hold in terms of Down's research? As the chromosomal defect occurs at conception, there will probably never be a cure. But detection procedures are improving; the hope is that a simple blood test on a mother early in pregnancy will give a "yes or no" answer.

That would not change things for David Betts, though. "We tried for eight years to have a baby, so when Cheryl became pregnant with Aymee we discussed the tests but agreed it wouldn't matter whether she had Down's, she would still be our child. We look at her now and she's such a wonderful little girl; we wouldn't change that decision."

Down's syndrome: the facts

* About one in 1,000 babies born in the UK will have Down syndrome

* One or two babies are born with the condition every day in Britain

* It is caused by the presence of an extra chromosome in the embryo's cells

* The condition occurs at conception, and is irreversible and incurable

* In total, there are about 60,000 people in the UK with Down's

* The syndrome was named after the English doctor John Langdon Down, who first described the condition in 1866

* Life expectancy of people with Down's is now 50 years. However, the condition is associated with a much greater risk of heart defects, childhood leukaemia and early dementia

* While older women have a higher risk of having a baby with the condition, four out of five mothers of a Down's child are aged under 35

* Around two-thirds of Down's cases are now diagnosed before the child is born, through the use of pre-natal testing

* More than 90 per cent of women who are told that their unborn child has Down syndrome decide to have a termination

Voices
voicesGood for Lana Del Rey for helping kill that myth, writes Grace Dent
Sport
The Pipes and Drums of The Scottish Regiments perform during the Opening Ceremony for the Glasgow 2014 Commonwealth Games at Celtic Park on July 23, 2014 in Glasgow, Scotland.
Commonwealth GamesThe actor encouraged the one billion viewers of the event to donate to the children's charity
Sport
Karen Dunbar performs
Entertainers showcase local wit, talent and irrepressible spirit
Sport
Members of the Scotland deleagtion walk past during the opening ceremony of the 2014 Commonwealth Games at Celtic Park in Glasgow on July 23, 2014.
PROMOTED VIDEO
Life and Style
ebookA wonderful selection of salads, starters and mains featuring venison, grouse and other game
Arts and Entertainment
The Tour de France peloton rides over a bridge on the Grinton Moor, Yorkshire, earlier this month
film
Life and Style
fashion Designs are part of feminist art project by a British student
News
Very tasty: Vladimir Putin dining alone, perhaps sensibly
news
Life and Style
Listen here: Apple EarPods offer an alternative
techAre custom, 3D printed earbuds the solution?
Arts and Entertainment
Top guns: Cole advised the makers of Second World War film Fury, starring Brad Pitt
filmLt-Col Steven Cole is the man Hollywood calls when it wants to borrow a tank or check a uniform
News
The University of California study monitored the reaction of 36 dogs
sciencePets' range of emotions revealed
News
Snoop Dogg pictured at The Hollywood Reporter Nominees' Night in February, 2013
people... says Snoop Dogg
Arts and Entertainment
A scene from Shakespeare in Love at the Noel Coward Theatre
theatreReview: Shakespeare in Love has moments of sheer stage poetry mixed with effervescent fun
News
Joining forces: young British men feature in an Isis video in which they urge Islamists in the West to join them in Iraq and Syria
newsWill the young Britons fighting in Syria be allowed to return home and resume their lives?
Arts and Entertainment
The nomination of 'The Wake' by Paul Kingsnorth has caused a stir
books
News
i100
Life and Style
food + drinkZebra meat is exotic and lean - but does it taste good?
Independent
Travel Shop
the manor
Up to 70% off luxury travel
on city breaks Find out more
santorini
Up to 70% off luxury travel
on chic beach resorts Find out more
sardina foodie
Up to 70% off luxury travel
on country retreats Find out more
Latest stories from i100
Have you tried new the Independent Digital Edition apps?

ES Rentals

    Independent Dating
    and  

    By clicking 'Search' you
    are agreeing to our
    Terms of Use.

    iJobs Job Widget
    iJobs General

    BI Manager - £50,000

    £49000 - £55000 per annum + competitive: Progressive Recruitment: My client is...

    BI Project Manager - £48,000 - £54,000 - Midlands

    £48000 - £54000 per annum + Benefits package: Progressive Recruitment: My clie...

    VB.Net Developer

    £35000 - £45000 per annum + competitive: Progressive Recruitment: If you're pa...

    SAP Business Consultant (SD, MM and FICO), £55,000, Wakefield

    £45000 - £55000 per annum + competitive: Progressive Recruitment: SAP Business...

    Day In a Page

    Screwing your way to the top? Good for Lana Del Rey for helping kill that myth

    Screwing your way to the top?

    Good for Lana Del Rey for helping kill that myth, says Grace Dent
    Will the young Britons fighting in Syria be allowed to return home and resume their lives?

    Will Britons fighting in Syria be able to resume their lives?

    Tony Blair's Terrorism Act 2006 has made it an offence to take part in military action abroad with a "political, ideological, religious or racial motive"
    Beyoncé poses as Rosie the Riveter, the wartime poster girl who became a feminist pin-up

    Beyoncé poses as Rosie the Riveter

    The wartime poster girl became the ultimate American symbol of female empowerment
    The quest to find the perfect pair of earphones: Are custom, 3D printed earbuds the solution?

    The quest to find the perfect pair of earphones

    Earphones don't fit properly, offer mediocre audio quality and can even be painful. So the quest to design the perfect pair is music to Seth Stevenson's ears
    US Army's shooting star: Lt-Col Steven Cole is the man Hollywood calls when it wants to borrow a tank or check a military uniform

    Meet the US Army's shooting star

    Lt-Col Steven Cole is the man Hollywood calls when it wants to borrow a tank or check a military uniform
    Climate change threatens to make the antarctic fur seal extinct

    Take a good look while you can

    How climate change could wipe out this seal
    Should emergency hospital weddings be made easier for the terminally ill?

    Farewell, my lovely

    Should emergency hospital weddings be made easier?
    Man Booker Prize 2014 longlist: Crowdfunded novel nominated for first time

    Crowdfunded novel nominated for Booker Prize

    Paul Kingsnorth's 'The Wake' is in contention for the prestigious award
    Vladimir Putin employs a full-time food taster to ensure his meals aren't poisoned

    Vladimir Putin employs a full-time food taster

    John Walsh salutes those brave souls who have, throughout history, put their knives on the line
    Tour de France effect brings Hollywood blockbusters to Yorkshire

    Tour de France effect brings Hollywood blockbusters to Yorkshire

    A $25m thriller starring Sam Worthington to be made in God's Own Country
    Will The Minerva Project - the first 'elite' American university to be launched in a century - change the face of higher learning?

    Will The Minerva Project change the face of higher learning?

    The university has no lecture halls, no debating societies, no sports teams and no fraternities. Instead, the 33 students who have made the cut at Minerva, will travel the world and change the face of higher learning
    The 10 best pedicure products

    Feet treat: 10 best pedicure products

    Bags packed and all prepped for holidays, but feet in a state? Get them flip-flop-ready with our pick of the items for a DIY treatment
    Commonwealth Games 2014: Great Scots! Planes and pipers welcome in Glasgow's Games

    Commonwealth Games 2014

    Great Scots! Planes and pipers welcome in Glasgow's Games
    Jack Pitt-Brooke: Manchester City and Patrick Vieira make the right stand on racism

    Jack Pitt-Brooke

    Manchester City and Patrick Vieira make the right stand on racism
    How Terry Newton tragedy made iron men seek help to tackle their psychological demons

    How Newton tragedy made iron men seek help to tackle their psychological demons

    Over a hundred rugby league players have contacted clinic to deal with mental challenges of game