If there was ever a case for ‘Can’t Cope, Won’t Cope’, it’s Susan O’Sullivan, but cope is exactly what she did.
Her first baby, Aoife, was born with a heart defect. While pregnant with her second, she witnessed the unexpected death of her husband, Gerad, in the kitchen of their own home.
She gave birth to Ciara Jane, who has Down syndrome, seven months later.
All of these traumas occurred within a single year and it’s testament to Susan, from Blarney, Co Cork, that she managed to pull through. She did so, she says, due to the unwavering support of her mother and father, Noreen and Pat, and extended family, And the sterling work of the Cope Foundation, whose staff were at hand from the moment Ciara Jane came home.
The unravelling of Susan’s married bliss dates back to 2013 when an anatomy scan revealed her first child had a blockage in one of the main arteries leading to her heart. Plans were put in place to ensure Aoife had ready access to the appropriate medical intervention following her delivery. Instead of giving birth in Cork, Susan booked into Dublin’s Coombe Hospital and, following a scheduled Caesarean section, Aoife, born on November 4, was whisked off to Crumlin Children’s Hospital for open-heart surgery.
But not before her mum got to see her.
“Gerad told the ambulance men her mother hadn’t held her and they needed to bring her up to me in the ward before taking her away. He was so tall and broad, no-one would dare defy him,” she says.
Aoife’s surgery went well and she was home in Blarney by the first week in December. She still has a mass under her heart, but it poses no threat at the moment. Whether she will require surgery in the future depends on how the mass behaves.
In the midst of the drama around Aoife’s birth, Gerad began to feel unwell. While Susan was in the Coombe, he stayed in a hotel. He awoke one night feeling sick and headed for the bathroom, but passed out before he got there. Susan says this was the first in a series of blackouts that continued over the following months. She says Gerad went for medical assessment on more than one occasion, but “they couldn’t find anything wrong”.
On October 8, Susan, again pregnant, went for a scan at seven weeks. Her due date was confirmed for May 16, 2015, Gerad’s birthday. The couple were delighted. However, Gerad’s “episodes” were ongoing at this stage.
“He was feeling faint, sick, his heart was racing. He described it as ‘like indigestion’.
The weekend after the scan, he went to work — a Friday night shift at Depuy, a subsidiary of Johnson & Johnson in Ringaskiddy. There was much banter among his colleagues at the prospect of his upcoming 40th and plans were afoot to travel to Liverpool and take in a football match. Gerad rang Susan and they joked about how to tell the lads he wouldn’t be able to make it because his wife was due on that date.
“I can remember the conversation,” says Susan. “We had a good laugh about it.”
He came home in the early hours of Saturday morning, stopping off along the way to pick up a milkshake for Susan. She went back to bed, with Aoife and Gerad remained downstairs. Susan subsequently heard a door slam and went to see what was wrong.
“He was in the kitchen, over the sink. He said: ‘This is a bad one.’ I sat him on a chair and called the ambulance.”
As she tried to cool him down with water, he leaned in to her and whispered: “I’m so sorry.” Then he slid from the chair.
Gerad, aged 39, died that morning, October 11, 2014.
Susan says it was high cholesterol that did for him in the end.
“The coroner rang me and said his heart had exploded in his chest,” she says.
Ciara Jane, to Susan’s relief, was not born on her father’s birthday — concerns that her heart rate had slowed down led to a decision to deliver early. Susan was brought into Cork University Maternity Hospital for a scan and says she spotted something not quite right about her baby’s face. She rang her sister and said: “I think she is Down syndrome.”
Her mother, ‘Nana Nonie’ to her two daughters, was there for the birth. Afterwards, staff showed Ciara Jane to her mother and took her away for assessment, but Susan didn’t hear her cry. When they brought her back, they sat Ciara Jane on her mother’s chest.
“I saw her eyes and something was wrong. I asked what was wrong. They said: ‘We think it’s Down syndrome.’ ”
Susan says she was “bawling”, “not because of the Down syndrome, but because I’d heard babies born with Down syndrome had a poor life expectancy”.
After two hours, Ciara Jane was taken to Temple St Children’s Hospital for surgery to address a bowel blockage. Once Susan was discharged, herself and Noreen spent the next seven weeks travelling up and down to Temple St, Susan from Monday to Friday and her mother at weekends.
“We’d pass each other on the trains on Friday — her going up, me coming down.”
In Temple St, Susan says she kept hearing: “Ciara Jane’s going to need an awful lot of physiotherapy, occupational therapy, speech and language therapy.”
“I had no experience of any of this,” she says. “I had no idea how to organise it. Who does?” she says.
Nurses in Temple St asked where in Cork she was from. When they heard she was in the HSE North Lee area, they said: “You’ll be fine. You’re on the right side of the river for Cope services.”
The link-up with Cope began before Ciara Jane even left Temple St. Susan got a phone call from Rachel Moriarty, a Cope social worker.
“She was my first contact with Cope, she was fantastic,” says Susan.
Back in Blarney, Rachel and Cope community nurse Stacey McKeown came to her home. “I was bawling at the thought of having to do all this myself. Then Stacey and Rachel arrived.”
Susan remembers that first visit. “It was the first time I could shower without an audience because normally I had to bring both my girls to the bathroom with me.”
Susan can’t speak highly enough of Cope home care assistant “Mags Senior” who now visits their home “as a friend”.
Susan was nervous about driving with her new baby whose blood sugars tended to plummet, so Cope brought services to her home.
“Siobhán came to do exercises with Ciara Jane and Eileen, the occupational therapist. When I found it hard to replicate the exercises at home by myself, Mags Sr would come and give me a hand.”
Ciara Jane started pre-school locally this week. When I met her at their Primrose Hill home, she was a bundle of energy and mischief. Susan says she has an unbelievable bond with ‘Granda Pabby’, Susan’s father. She is the apple of Susan’s eye.
“My girls are my biggest blessings,” says Susan.
Cope’s early intervention team played no small part in getting Ciara Jane to where she is, says Susan. Along with the physio, occupational therapy, and speech and language therapy, she’s had dental check-ups — which most kids can’t access in the public system until second class. Cope has arranged for her to have a sleep test at the Mercy University Hospital because her sleeping is poor.
“They’ve made things so much better for me,” says Susan.
Tomorrow night, Susan has a chance to give something back. She’s taking part in a special celebratory show to mark Cope’s 60 years in Cork. The Cope Foundation story will be told through music, drama, dance, conversation, and poetry. Susan will read a poem expressing her thanks for the support she has received through the past couple of years.
The concert, at City Hall, ‘Cheers to 60 years’, is open to the public.
The Cope Foundation was established in 1957 in response to the Cork Polio Epidemic and today offers an array of person-centred services and supports to 2,350 children and adults with intellectual disability and/or autism across its 69 locations in Cork City and county, by working in partnership with individuals, their families, and local communities.