Mum seeks solidarity on World Down Syndrome Day

 

 

A Cavan mum whose daughter Grace was born with Down Syndrome has spoken of the heartfelt reasons she and her family will be celebrating World Down Syndrome Day 2018 today, Wednesday, March 21.

The McBreen family from Knockbride near Bailieborough will be celebrating the event just like the many thousands of Irish families with a child with Down Syndrome.

But in the weeks before Grace was born, Sinead McBreen and husband Martin were told by doctors the outlook for their pre-born child was “extremely bleak”. In the womb, Grace developed a condition which we were told can lead to pre-natal heart failure. “We were warned that Grace wasn’t going to survive and we should pick a plot in the cemetery so that it would be less difficult when the time comes. We were told over and over again that our pre-born baby was 'incompatible with life'.”

The heartbroken couple were furthermore encouraged to “explore our ‘options’.”

Not only did the McBreen family find the advice “deeply hurtful”, but as it turned out, it was also wrong. “We refused to give up on Grace,” says mum-of-five Sinead, a nurse and co-founder of The Perfect Gift charity which supports parents with Down Syndrome children.

Grace was born at 37 weeks by planned Caesarean in November 2014. “Yes, she had Down syndrome but she was perfect in every way.”

Sinead describes her daughter as a “miracle baby” who “defied all the medical odds” to survive.

“I don't fault the doctors who diagnosed Grace with a so-called fatal foetal abnormality. They truly believed the outcome from what they saw on the scans. Nevertheless they were wrong. But I would never have known this if we hadn't continued with the pregnancy.”
Now Grace is a thriving little girl and she brings joy to the lives of the McBreen family.

Meanwhile, Sinead feels the world is beginning to recognise “the unique qualities” Grace, and millions of children like her, bring to the world, as well as “draw out of” other people around them.

“As a society, we have advanced so far in our respect and support for people with disability. Only recently I read about a Down Syndrome Irish teenager who landed a modelling contract and made her debut at Belfast Fashion Week.”

Kate Grant, a 19-year old from Cookstown, was inspired by Australian model Madeline Stuart who also has Down Syndrome. Stuart has strutted the catwalks of New York Fashion Week and has her own fashion label. More recently, Gerber, a global baby foods brand, chose a baby with Down Syndrome to be its ‘face of 2018’. “These developments are a massive cause for celebration. “Thankfully society’s views on special needs and disability has changed radically over the past decade. As a proud Irish person, I like to think a catalyst for that change was an unforgettable event in Croke Park in Dublin 15 years ago.”

Sinead recalls the summer’s evening in June 2003, when human rights champion Nelson Mandela addressed the Opening Ceremony at the Special Olympics. He, along with rock stars including Bono and hundreds of athletes, Sinead believes, helped demolish prejudices and perceptions of disability in “one fell swoop”.

But, the Games’ “most enduring legacy” Sinead believes was even more profound than that.

“No longer did society regard people with life-limiting conditions as victims but as individuals with limitless potential. They had voices of their own that had to heard, and like Grace they had a powerful story to tell the world about dignity and endeavour in the face of overwhelming odds. That is definitely another cause for celebration.”

As world marks Down Syndrome Day 2018, what Sinead says is a “not a cause for celebration” is the way in which public debate over the forthcoming referendum on the 8th Amendment “appears to be pitching” parents of children with Downs Syndrome against each other.

“This is heartbreaking to watch. But what is equally heartbreaking to watch is attempts by some to silence those who raise concerns over national health screening programmes that seek to eliminate Down Syndrome babies altogether. Surely we can find common ground on this point?,” says Sinead, highlighting the work of ‘Bridget Jones’ actress Sally Phillips who, driven by the experience of raising her son Olly who has Down’s syndrome, explored the ethical implications of screening policies that strive to eliminate the condition in her thought-provoking documentary ‘A World Without Down Syndrome’.

Philips, who is pro-choice, investigated a thorny subject that begs the question: what sort of world do we want to live in and who do we want in it?

Among the places she visited was Iceland, which has a 100pc termination rate in Down’s cases after the introduction of the prenatal test, while Denmark is expected to be ‘Down Syndrome-free’ by 2030.

“So, on this day when we celebrate the dignity and endeavour of people with Down Syndrome all over the world, it’s time to ask if we as a society are sending out apparently contradictory messages on how we treat disability,” says Sinead.

“Does outdated thinking on Down Syndrome still prevail in Ireland? Or can we truly say that our society no longer regards people with life-limiting conditions as victims but as individuals with limitless potential? If the latter is the case, then that’s certainly something to celebrate.”