The lack of “congratulations” after the birth of their daughter with Down syndrome 11 years ago spurred a Cavan couple to establish a charity to help other new parents of babies with the condition.
Sinéad Fidgeon, a nurse, and her husband Martin McBreen, a farmer, were honoured in Leinster House on Thursday as they received the Oireachtas Human Dignity Award for their work over the last decade helping children with Down syndrome and helping their families.
As a way to help other parents through the “overwhelming” time after having a baby with the condition, Ms Fidgeon set up the “The Perfect Gift” in 2015.
It was sparked by a concept she saw in Canada involving the provision of baskets of gifts for the mother and baby, a personal congratulatory letter and an invite to their online support group.
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Since then, more than 1,000 baskets have been delivered to parents of babies with Down syndrome across the country.
“The Perfect Gift” took off quickly. Ms Fidgeon said parents would ring them to say the basket “lifted them out of a dark place”.
Now they may get a call from a public health nurse, a hospital or other family members when a baby with Down syndrome is born.
The couple were told over the phone during pregnancy that their daughter Grace, who is now 11, would have the condition.
The couple felt they were left on their own after receiving the news.
Ms Fidgeon worried how it would affect her life and her other children. She questioned what kind of life their daughter with Down syndrome would have.
“I felt there was an awful lot of negativity, a lot of ‘I’m sorrys’, not a lot of ‘Congratulations’, and it hurts because Grace was my fifth child and I straight away felt she was less than the rest of them, which she wasn’t,” Ms Fidgeon said.
“When they diagnose Down syndrome they give you every negative thing that’s going to impact the child’s life, which I hated hearing.”
In 2016, the couple, alongside Mary Hall, who lives in Monaghan and whose 10-year-old son Jack has Down syndrome, cofounded Hub 21, which provides services, social activities, training and information to children with the condition and to their families.
The hub in Carrickmacross is accessible for families in counties Cavan, Monaghan, Meath and Louth.
“In small ways you might be making big impacts, but in any small way you might help to make the world a wee bit better,” Mr McBreen said.
Independent senator Rónán Mullen proposed Ms Fidgeon and Mr McBreen as award recipients.
Ms Fidgeon said: “It’s fabulous to be acknowledged. It’s been incredible people who got the award before and you kind of think we’re really not in that league at all, but it’s lovely.”
