Helen O’Callaghan speaks with two mums, each with a toddler with Down syndrome, seeking to end the negative attitudes to a diagnosis of the condition.
Two mums, each with a toddler with Down syndrome, have for six months been sending gift hampers to mums of newborns diagnosed with the condition.
For Sinead Fidgeon and Rachel Adams, Baskets of Love is a bid to banish negative attitudes to a Down syndrome diagnosis and to say to new mums: ‘Congratulations, Mama. You did an amazing job! Your child is perfect.’
“So often, news of a child having Down syndrome is greeted with fear, sorrow and even condolences. It’s sad but true that parents often never hear ‘congratulations’ after their baby’s birth,” says Cavan-based mum of five Sinead. It’s an attitude that prevails “from the top down”.
“After Grace, 22 months, was born, a doctor said ‘I’m very sorry — she definitely does have Down syndrome’.
“When people say ‘sorry’, you automatically feel a bad thing has happened. She was just a few hours old and we were being told what she’d never achieve in life, that she’d only be 50% as good as any other child.”
Sinead, 45, will never forget a midwife’s words, whispered into her ear: ‘she’s beautiful — she’s as cute as a button’. Those, she says, are the words she wanted to hear. “They’re what every mum should hear. They’re what I carry with me to this day. When everybody else came in with ‘I’m sorry’, I just listened to her words.”
Dublin-based teacher Rachel started Facebook support group Downright Perfect soon after her son, Matthew, 2, was born. It started with six members – now there are 300.
“I felt there was a gap. You’re given your diagnosis and left to your own devices. You want to talk to people who also have a child with Down syndrome.” Both mums feel strongly that attitudes expressed in the first minutes, hours and days of a baby’s life will impact how a parent copes with a Down syndrome diagnosis.
“Much of the trauma mums endure is to do with what other people say,” says Rachel, who cites upsetting comments reported by mums in the Facebook group: ‘We’re heartbroken for you’, ‘We’re so sorry’, ‘My condolences’, ‘You’ll love her eventually’, ‘Sorry you didn’t get the baby you wished for’, ‘Why do bad things happen to good people?’ ‘It’s a pity you didn’t know beforehand — you could have done something’.
She says mums report being avoided by others. “They feel you’re in the depths of sorrow about your child.”
Rachel says Matthew is the love of her life.
“If anything offensive is said, it’s so hurtful because he’s everything to me. That extra chromosome doesn’t define your baby — it’s only a tiny part of who he is.”
Sinead believes most negative forecasting for babies with Down syndrome is based on old stereotypes.
“They said Grace wouldn’t walk until she was three or four. She walked at 18 months. With early intervention, our children will achieve everything, at a slower pace and on their terms.”
But outdated stereotypes filter through. When she told her other children — ranging in age from 17 to eight — that Grace had Down syndrome, they were scared. “They thought it was a bad thing. Now they see she’s amazing, she can do anything.”
Sinead joined Rachel’s Facebook group a year ago. “It was just a beautiful group of moms who wanted to celebrate their babies.”
When both mums realised they had each individually contacted Vancouver-based Danielle Gibbons, who set up Baskets of Love there, they felt this was meant to be for babies with Down syndrome born in Ireland too. The Baskets of Love message is of welcome and celebration.
“It’s to say ‘a baby has been born, a beautiful baby – let’s celebrate’. It’s to let moms know as early as possible about the online support group, that they’re not alone and to feel ‘OK, actually I can do this’.”
Six companies are on board to sponsor the €400-€500 worth of gift items contained in each basket — Dunnes Stores, Leigh Tucker, McCabe’s Pharmacy, Bog Standard, Allegro and Baby Elegance.
New moms receive a set of newborn clothing, luxury toilet items, a candle, baby products such as soothers, baby blanket and bib, as well as two books: Unexpected, a collection of stories from families worldwide, who have received a Down syndrome diagnosis, and Kelle Hampton’s memoir, Bloom: Finding Beauty in the Unexpected.
“So often after the birth, you’re handed a leaflet about Down syndrome which isn’t what any mammy wants to get. It feels very cold and goes into the future, which [at that point] isn’t helpful,” says Sinead.
Whereas the books in Baskets of Love have “uplifting but realistic stories, showing what mums felt when they got a diagnosis. You’ll find your own story there”.
Sinead knows every mum deals with the diagnosis differently. “Some are devastated, some grief-stricken. Some cry for three days and afterwards are angry with themselves for their reaction. These books show it’s ok to be upset, to cry and to feel what you’re feeling — you’re not alone.”
It’s estimated 120 to 130 babies are born annually in Ireland with Down syndrome. Since May, 60 Baskets of Love have gone countrywide to mums and newborns.
Sinead’s 14-year-old twins, Clodagh and Annagh, love the idea and have helped from the start. When mums in the Facebook group hear of a new baby with Down syndrome, they ask: ‘can we get a basket down’. Hospitals are becoming aware of the project.
Sinead recalls when her twins were born, a 21-year-old having just given birth to a baby with Down syndrome.
“All the nurses were around the baby, saying ‘oh, I think she has Down syndrome’. One was crying. The paediatrician came in and checked her heartbeat. He said: ‘so what? She’s perfect’. That’s the kind of attitude we need.”
To donate to the Baskets of Love cause, visit https://www.gofundme.com/theperfectgiftT21.
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