July 13, 2018 (Society for the Protection of Unborn Children) – When doctors told Todd and Nicola Bailey that their twin daughter Harper had Down's syndrome, they broke the news by saying, “I'm so sorry”.
But the proud parents insist that there is nothing to be sorry for. “Our family is unique and I wouldn't change it for the world,” says Nicola.
The Sheffield couple, who are also parents to four year old Lucas, didn't find out that Harper had the genetic condition until she was born, 38 minutes before twin sister Quinn. Around 40,000 people in the UK have Down's syndrome and experts said the chance of having one twin with the condition is one-in-a-million.
Nothing to be sorry for
“All I really remember is the doctor saying 'I'm sorry',' says Nicola of when the diagnosis was delivered. “But as soon as I saw them both my heart just melted. They were both so beautiful.”
Nicola, a nurse, is now striving to educate people about Down's syndrome and reduce the stigma. “Harper is Harper and Quinn is Quinn – they are not the same so I try not to compare them, however hard that may be,” she says.
“I don't see Harper as any different to my other children and would not change her for the world. You do see people staring at her and it's hard at times as the perception of Down's syndrome can be so negative. We get comments like 'oh is she a Down's baby' or 'I know a Down's girl'. She's not a Down's baby, she's a baby with Down's syndrome.
“They still break the news by saying 'I'm sorry. I'm really not sorry. Harper is perfect I would not change her, her little smile lights up the room and she is who she's supposed to be.”
Attitude of health professionals still worrying
The Baileys are yet another example of doctors giving a Down's syndrome diagnosis in negative terms. In a debate on genetic screening in Wales, one mother complained about the language health professionals use when talking about babies with the condition. “I have been told 'I was one of the unlucky ones', whereas I would say I agree with the phrase 'lucky few' because we are extremely fortunate to have a child with Down syndrome,” said Tanika Bartlett-Smith, mother of Leo. “It is quite frightening because if you have to educate health professionals, then how do you educate the general public?”
It may not be coming home but we wouldn't change a thing
However, campaign groups are working hard to change perceptions. In the last few days, a version of the football anthem Three Lions signed in Makaton by children with Down's syndrome and their families has gone viral – and brought comedian David Baddiel to tears.
Claire Constable, who is part of the group and features in the video with her son Ben, told ITV News: “Our message throughout is #wouldntchangeathing and we are working together to change existing perceptions of the condition and help others to feel better informed of aspects of Down’s Syndrome that may not be apparent initially.
“We had a prenatal diagnosis with Ben and it would’ve helped us greatly to have been exposed to such material as we started our journey into parenthood with Ben.”
Published with permission from the Society for the Protection of Unborn Children.