For many expectant mothers, learning of a Down syndrome diagnosis can be fraught with negativity. Too many doctors press women to abort children with Down syndrome; others in the medical community only emphasize the challenges of raising children with disabilities instead of seeing the beauty and value inherent in each and every child. What should be the celebration of new life can become a time of fear and negativity.
One mother from Belfast is out to change that, helping mothers of newborns with Down syndrome have a more positive experience.
Before Ciara Smyth gave birth to her son Jacob last year, she had no idea he had Down syndrome. She was 28 and had experienced a smooth pregnancy up until the birth itself. During the labor, her temperature spiked, and she found out Jacob had an infection that was causing complications. But she knew something else was worrying the doctors. She relates:
“[A] couple of hours later the head of the Pediatric Department came down and asked us questions. We just asked, ‘Look what is this, what is wrong?’ and she said, ‘Well one of the things it could be is Down Syndrome’.
It just hit me like a ton of bricks. I asked what the chances are, and she said I’m 90% certain.”
Ciara knew about the physical difficulties that are often experienced by children with Down syndrome and was afraid that Jacob would have to undergo surgery. A wave of questions flooded into her mind, and those around her focused on his limitations – but she refused to buy into that narrative:
“Soon after I was told about Jacob, I remember thinking, ‘Is he going to be able to talk, write, read books, what this will actually mean for his life’ and no one could tell me. They just said, ‘Yeah he probably will need heart surgery, scans, glasses – but Jacob hasn’t needed any of these things, he’s thriving. We just felt there wasn’t that message, it wasn’t a congratulations we felt that day and that was the worst thing I remember about it…
It was just fear, like everything was stripped away… all the possibilities for him and all our hopes and dreams – but we didn’t accept it.”
When Ciara realized how much light and joy Jacob had brought to her life, she wanted to find ways to get involved and ensure that others could experience that joy too, instead of being inundated with negative reactions from medical personnel.
That’s when she got involved with the Congratulations Project, which sends personalized letters to new parents of children with Down syndrome. Each letter is handwritten by someone with Down syndrome, congratulating parents and sharing inspiration and encouragement. The Congratulations Project also compiled its letter into a book in 2018, and distributes that book to expectant parents.
A Mission of Her Own
After hearing about this project, Ciara set out on a mission of her own: to bring these books to each maternity ward throughout Northern Ireland. Together, Ciara and her husband Adam founded a charity called Joy21 to facilitate the partnership with the Congratulations Project. Ciara hopes that parents with newborn children with Down syndrome can have a more positive experience than her own. She says:
“Every child deserves for people to view them as an individual, not as a category, and we want to have that book available for every single parent the second they find out at their 20-week scan or after delivery.”
Ciara wants to change the attitudes around having a baby with Down syndrome, and has been coordinating with the health department in Northern Ireland to provide educational resources to midwives and pregnant women:
“There is a really high level of postnatal depression within the community of women with Down Syndrome babies and that’s not OK, it speaks volumes. I have been in contact with the Department of Health about distributing them across all the maternity wards. I want to do training with midwives and educate them on things that are good to say and terms to avoid.”
She also includes personalized words of encouragement, offering herself as a sounding board to mothers who have any questions or concerns:
“Inside the books will be a letter from us and our story and number if they want to contact us and chat and we will outline all local support groups for each area as we didn’t get any of those details until Jacob was two months.
There will also be two handmade parent bracelets with three stars to represent three copies of chromosome 21. If we help one or two people that would make us feel good and maybe one day we could have our own book with letters from Northern Ireland as, on average, one or two babies a week are born with Down Syndrome here.”