‘Our differences enrich the world’ - Suffolk parents hit out over ‘negativity’ around Down’s syndrome
PUBLISHED: 19:30 17 October 2018 | UPDATED: 09:39 18 October 2018
LIANNE MARIE PHOTOGRAPHY
Expectant parents may feel pressured into terminating pregnancies unnecessarily, claim members of the Down’s Syndrome Support Group in Ipswich who are calling for a more balanced perspective.
They fear negativity around the condition from health professionals around condition means parents are being put through unnecessary heartache.
Julie Nightingale, who set up the group three years ago, said the barrage of warnings she was given after learning her daughter Jasmine was likely to have Down’s syndrome had left her fearful of what lay ahead.
However, Suffolk maternity services providers have said the information offered is impartial and based on national guidelines – but welcomed feedback on ways to improve services.
Mrs Nightingale said: “It seems as though we’re living in a society that doesn’t value people if they’re different.
“But actually, being different isn’t necessarily a problem and if we were all the same the world would be a very boring place.
“Our differences enrich the world and our lives. For our family, having Jasmine has been such a positive experience.”
Despite the warnings, Mrs Nightingale said her daughter, now aged six, was a happy and healthy little girl with few of the problems the family was told to expect.
“Jasmine is doing really well,” she added. “She is in school with her brothers and she wants to do everything they can do.
“There are some challenges but she is progressing really well.
“She’s even learning to play the violin.”
Mrs Nightingale believes that sharing positive accounts of life with Down’s syndrome can provide parents with a more balanced perspective and reduce unnecessary worry.
She has highlighted the achievements of a recent music video called “Wouldn’t Change a Thing”, which shows the experiences of “50 ordinary families” who have a child with Down’s Syndrome, as an example of how to counter the negativity.
Mrs Nightingale said that if she had seen the video, which has had more than four million views, it would have been helped alleviate the fear she suffered.
“It would have made a huge different,” she added. “That’s why I started the group – to be there for new parents.”
The group, which meets around once a month at the Colchester Road Baptist Church in Ipswich, has grown to accommodate up to 25 families per session. Mrs Nightingale said the informal meetings included singing, activities and “lots of cake”.
“We’re trying to find out from each other what works best for their children,” she said,
“We’ve gradually grown as a group, we’re beginning to reach new members and people are developing new friendships.”
One of the group’s newest members Nakita Duffy, from Stoke by Nayland, said it had been an “amazing help” – and a huge relief after the information she had been given during her pregnancy with her third daughter Willow, who has Down’s Syndrome.
“It was absolutely terrifying to read about all of these things that could be wrong with your child,” she added.
“It was very one-sided.”
However, when Willow was born 10 weeks ago, all of her concerns disappeared.
“I just saw my baby in the same way as I did my previous two daughters,” she added.
“There was no more fear about everything going wrong. She hasn’t had any health problems, she breast fed straight away, she is putting on weight and in the past three weeks she’s started to smile.
“She has exceeded our expectations compared with what we’d been told. She is absolutely wonderful and the family adore her. My other two daughters are totally besotted.”
Beth Bedingfield, who attends the group with her four-year-old son Noah, said it had been “amazing”.
“I’m sure all families that come feel the same,” she added. “We have made many lovely friends from it and we all try to help and support each other in any way we can.”
Although Mrs Bedingfield did not find out that Noah had Down’s syndrome until after he was born, she said her experiences with health professionals had been similar to the other families.
“I feel like some doctors and professionals look at Down’s syndrome as a very black and white condition instead of looking at your child as an individual,” she said.
“All of our children are very different. Noah is four and he is an absolute star who we couldn’t be more proud of.
“He has just started primary school and is getting on really well and already coming on leaps and bounds in so many ways.
Mrs Bedingfiled said that when she and her husband Ryan were told the diagnosis they were not “heartbroken or distraught”.
“We just saw him as our gorgeous perfect baby boy,” she added.
Nationally, the Down’s Syndrome Association has been leading the Tell It Right, Start It Right campaign for health providers to offer families up to date and accurate information about the condition.
The charity claims a “significant number” of health professionals continue to provide “biased” information about Down’s syndrome.
“Prospective parents have reported feeling pressurised into a termination when being given a very pessimistic view of the life chances of someone with Down’s syndrome,” the charity said.
As part of the campaign, the charity has trained more than 4,0000 midwives to help them provide accurate and balanced information about living with Down’s syndrome.
Hospitals delivering maternity services in Suffolk said they were committed to supporting expectant parents.
Lynne Saunders, head of midwifery at West Suffolk NHS Foundation Trust, said: “If a diagnosis of Down’s Syndrome or any other condition has been made during pregnancy, it is our duty to provide balanced and accurate information about the condition and to answer any questions parents may have.
“Our screening department staff develop and maintain relationships with our families who receive a Down’s Syndrome diagnosis, and are a point of contact for them whenever they need, either over the phone, via email or face-to-face.
“We have helped put new parents of Down’s Syndrome children in contact with each other – a mutually beneficial support network for both of them, and direct parents to the Down’s Syndrome Association charity for further information and support.
“Although children with Down’s Syndrome will have some degree of learning disability and may have an increased chance of other health conditions this does not mean they won’t lead healthy, fulfilling lives.”
A spokesman for Ipswich Hospital added: “This is really valuable feedback.
“We encourage any mums who feel like this to join our maternity voices partnership which brings together people who have used services and what to change them.
“All information we provide will have been based on national guidelines.”
To find out more about the support group search for “Down Syndrome Suffolk” on Facebook.
Visit Positive About Down’s Syndrome for more family stories about life with the condition.