Mothers of infants with Down’s syndrome share honest account and dispel myths surrounding the condition
PUBLISHED: 12:13 18 February 2019 | UPDATED: 13:47 18 February 2019
Mothers and friends Emma Taylor and Zoe Lee had no idea their children would be born with Down’s syndrome until the moment they came into this world.
Just two days before Eli was born in April 2014, Mrs Taylor, 37, and her husband Chris, 38, were told at the hospital that she could terminate her pregnancy as there was a possibility her child would be severely handicapped.
“We said ‘no’ – we didn’t even think about it, it was a no brainer for us,” said Mrs Taylor, of Windsor Park Gardens, Norwich,
Zoe Lee, 35, and husband Steven Lee, 35, from Old Catton, said they would not have considered abortion had they known their son, Mason, would be diagnosed with Down’s syndrome before he was born in June 2014.
“It wouldn’t have changed anything,” Mrs Lee added.
The controversy surrounding abortions of prenatally diagnosed Down’s syndrome babies, which stands at around 90pc in the UK, is something that Mrs Taylor and Mrs Lee know all too well.
In Iceland, Down’s syndrome has all but eradicated as figures from recent years reveal 100pc of Down’s syndrome pregnancies are terminated.
The mothers are also aware of the concerns raised over the introduction of the non-invasive prenatal test that has been rolled out on the NHS in 2018, which detects early signs of Down’s syndrome and other genetic disorders.
Both have stated they are pro-choice and strongly believe it is up to an individual to decide whether they would be able to cope with bringing up a child with a disability.
But they question why the abortion rate is staggeringly high, blaming common misconceptions and negativity surrounding Down’s syndrome.
Mrs Taylor said: “Why do they say no? There is a lot of negativity and if you Google Down’s syndrome it tells you a lot about the issues and problems your child might have, but it doesn’t tell you all the awesome things your child can achieve.” “When we were told Mason had Down’s syndrome, it was a shock,” said Mrs Lee. “We were upset but it’s the way they deliver the news, straight away it’s all negative.
“My hormones were all over the place and I was a mess, but they told us ‘we’ll do a test for leukaemia’ and they think he’ll die young and have problems growing up and say that it will be hard, your life will be hard.
“It was hard to take.”
To help worried parents, Mrs Taylor and Mrs Lee set up a Facebook page, called Best Buddies and their Adventures, which acts as a diary for both of their children.
They post pictures of birthdays, breakfasts and days out, as well as frank and honest messages of support about difficult times.
“There are rubbish times when they are poorly, but that is like all children,” Mrs Taylor said. “It might take longer for them to do something but that makes us celebrate more when they are able to achieve their milestones,” Mrs Lee added.
“It makes us prouder.”
Through their Facebook page, the mothers have been able to offer advice to other anxious parents who are unsure or are struggling to cope and need a support network.
Both mothers have said research is key in times of doubt, through speaking and meeting with other families who have a child with Down’s syndrome to get a real life experience.
The Facebook page has helped parents to come forward to ask difficult questions and share advice with each other to seek support through numerous charities, such as The Hamlet and Nansa.
Eli and Mason, both four-years-old, are like any other infant – they are playful, mischievous and both attend a mainstream school where they are making progress on a daily basis.
They also love to dance to Baby Shark.
“A common misconception is that all children with Down’s syndrome are always happy,” Mrs Taylor said. “They can be grumpy and moody like all children.”
Mrs Lee admitted that she worries for Mason’s future, but added: “If you dwell too much on the future you’ll miss what’s happening now.
“Society is more accepting, since the babies have been born there has been a lot more out there, people are more aware now.
“There are more opportunities and more acceptance, and we want that to be just life.”
For World Down’s Syndrome Day – on March 21 – the pair will be lighting up City Hall and The Assembly House in blue and yellow and are encouraging other families to meet and celebrate the “little added extra” in their children and loved ones.
For more information, visit: www.facebook.com/bestbuddiesandtheiradventures.