‘Every baby is perfect’: couple honoured for Down syndrome support work

A Cavan couple, who set out to ensure parents of children born with Down syndrome hear the word “congratulations”, have been honoured with the ninth Oireachtas Human Dignity Award.

Sinéad Fidgeon and her husband Martin McBreen received the award at a ceremony in Leinster House, presented by Iar-Cheann Comhairle Seán Ó Fearghaíl.

The couple were nominated by Independent Senator Rónán Mullen in recognition of their advocacy and community-building work.

Their journey began in 2014, when their daughter Grace was diagnosed with Down syndrome before birth. The experience exposed them to what Ms Fidgeon describes as an absence of celebration at a moment that should be filled with joy.

“So many parents hear the words ‘I’m sorry’ after the birth of a baby with Down syndrome,” she said.

“There is often a lack of congratulations, and it can be an overwhelming time for new parents.”

That insight led Ms Fidgeon to establish The Perfect Gift in 2015. The initiative delivers gift baskets to families welcoming a baby with Down syndrome, offering a message of affirmation at a vulnerable time.

To date, more than 1,000 baskets have been delivered to families in every part of the country. Each basket contains gifts for mother and baby, a personalised letter welcoming the family to the Down syndrome community, and an invitation to a private online support group.

“I wanted to make sure every parent hears ‘congratulations’ and knows their baby is just perfect,” Ms Fidgeon explains.

“While no one wants to sugar-coat the challenges, it’s vital to highlight the positives- and there are so many.”

The Oireachtas Human Dignity Award is presented by the Oireachtas Life and Dignity Group and previous recipients include Gina Heraty of Our Little Brothers and Sisters Orphanage in Haiti and the late Brother Kevin Crowley.

Mr McBreen said the award was primarily recognition of that work, while also acknowledging the couple’s role in establishing the Down Syndrome Centre North East, now known as Hub 21, alongside co-founder Mary Hall.

“While the award was presented in relation to The Perfect Gift, Hub 21 was acknowledged as well,” he said.

“There were many deserving people, but when something like this is offered, you accept it gratefully.

It was really nice.”

He said the recognition mattered, but what mattered more was keeping families connected at a time when numbers are falling.

“Screening has significantly reduced the number of children being born with Down syndrome,” he said.

“Around 95% of those screened are choosing not to continue the pregnancy.

That’s sad, but it’s the world we’re living in.”

Because of that, Mr McBreen says it is more important than ever to share a positive message.

“We don’t highlight nearly enough what people with Down syndrome add to our world,” he continued. “For those who don’t know, they often imagine it’s a very tough life- but that perception simply isn’t true.”