Plenty of things are unimaginable until you have no choice but to imagine them.
The Christmas before last, Collette O’Toole and her partner Tom took their son to see Santa at Fota, outside Cork City. Then, later that afternoon, Collette and Tom went to pick the grave for their as-yet-unborn daughter, Isabelle.
This “worst nightmare” scenario was just one marker on a journey which began when Collette, now 35 and living in Cobh, went for her 12-week scan at Cork University Maternity Hospital back in 2013. The couple already had a young son, Cillian. They attended the scan with the usual jumble of excitement and anticipation.
The first sign of alarm came when the woman conducting the ultrasound spotted something. “She didn’t tell us straight up something was wrong but we could tell,” Collette recalls.
“Her eyes watered up a little, and she said she had to go out to talk to the consultant and she came back and told us to prepare for the worst.”
At that stage, “the worst” as far as Collette was concerned was that her baby might have a disability, something she and her partner were fully prepared to contend with; but it was much worse than that. The consultant revealed that the baby girl had anencephaly.
“Her brain would not develop, her skull would not grow,” Collette says.
“We were told if she survived at all it might be for a few minutes to a day or two — we would be lucky if she made it to that.”
And so it began.
Almost before they had a chance to revel in the expected birth of their second child, Collette and company were already faced with planning for a future without her, and so they set about making sure she would always be a full member of the family.
They gathered as much information as they could, tapping into the work of organisations such as Féileacáin and A Little Lifetime Foundation, plus the “amazing” assistance from those in the Cork University Maternity Hospital, including the services of a bereavement midwife and counseling.
“We did not know how long we had,” Collette says. “I was hopeful we would make it full term.
“I had her moving and kicking and the hope is you might get something at the end, that she might not die, even though it’s clinical — I think hope gets you through it, you have to believe there is a chance.
“I would not say miracles,” she says, when asked if she began to entertain thoughts that somehow Isabelle would survive. “Just that I would get to feed her, maybe. It would be a privilege to get any distance in the pregnancy.
“It was a very dark time, I was afraid to let it overtake me — I cherished every little kick I got, I actually felt lucky I had that opportunity. I knew my time with her was so short that I had to make the most of that.”
The pregnancy was a kind of strange and fluctuating paradox, full of oscillating emotions. “It is horrific, the grieving almost starts straight away but I was afraid to grieve as I didn’t want to pass that onto the baby,” Collette says.
“I didn’t want her to be upset. I did do some grieving but I did not want to be crying every day. I thought ‘I have the rest of my life of that’.”
The baby girl was due in April, but on February 20 last year, at just over 32 weeks, Collette’s waters broke. She says her baby “decided” to come that day. Tom, who is in the Navy, rushed home, and the hospital were informed in advance as the couple made their way to CUMH.
“I always thought she would survive longer because when I heard her heart in the doctor’s surgery, it was so strong, I thought she would make it to full term.
“We were taken care of straight away, they were fantastic up there. We had a room in the labour suite and it wasn’t until 3.30pm that things started to move, and at 4 o’clock, unfortunately, her heart stopped, and she was born at five to five.
“The hardest part was the confirmation that her heart had stopped. What killed me more was that she won’t see me. But then, somebody told me, maybe she spared you from that pain, not [seeing] her take her last breath. I have to believe that — she spared me that sight.
“That got me through.”
You could spend a long time trying to arrive at a suitable description for the pain caused by the passing of a baby or young child. An endlessly ringing bell? An almost physical emptying out of body and soul? Or persistent sorties from an invisible army, where every accidental moment of respite simply allows them to gather their forces anew and attack all over again.
Collette likens it to a vase. “The vase breaks and you can put it back together but it’s never the same again,” she says.
Collette had Isabelle in her room in CUMH. She bathed her and dressed her. They decided to bring her home before she was laid to rest. The memory box Collette was given was opened and filled, and, crucially, they engaged the services of Now I Lay Me Down To Sleep, a non-profit founded in the US and now operating here. A free service, it allows families a chance to properly document their time with their child before burial. With Isabelle, that task fell to photographer Denis Hyland.
According to Brid Shine, a specialist bereavement midwife at the Coombe Hospital in Dublin, these pre-arranged photo sessions are “not just a nice thing to do, it is evidence-based practice”.
“It highlights that people have an ongoing connection with the people they love,” she says. “You will feel their presence rather than their absence, and the symbolic memories we have are very important to support that.
“[The parents] do heal, they come from their grief, though the sadness of that loss never leaves them. We see parents who grow around that loss. The grief stays the same but we as human beings evolve and grow. It becomes a part of who we are.”
Denis Hyland says: “You end up like a counsellor.” His personal touch and sensitivity receive nothing but praise from Collette, who describes it as “an amazing service”.
“What I wanted to do was protect her dignity and respect her,” she says of Isabelle.
“If she was alive we would have a family portrait. You think ‘she’s asleep — can we still not do it?’ The most cherished treasures we have are the pictures of her.”
She says having the pictures taken is “the strangest feeling ever”. “I don’t know how I got the strength that day to smile in the pictures,” she continues, but those portraits now adorn the walls of her home, a source of strength and comfort.
To those who query the practice, Brid Shine tells the story of an elderly lady she got to know through a previous role in the care services. The woman’s husband died, which prompted an unexpected reaction.
“She cried incessantly for the baby she had lost 50 years before. She had never seen or held that baby and she was told to go home and try again. When her husband died, it was her opportunity to talk about that baby and grieve openly.”
Isabelle’s first birthday is coming up, another milestone. The family pay regular visits to Isabelle’s grave, but they now think of it as “Isabelle’s Garden”, which is what they call it when they go with Cillian. All these things help a little, sometimes a lot.
“People will say to you that they have been through things and it will ease, but at the moment I can’t see it,” Collette says. “You just find ways of coping to get through your day. I was crying this morning, you know what I mean, and I’m OK now. You just wake up some mornings and she is such a big part of your life that is not here physically.”
Unimaginable. Maybe all you can do is ‘imagine’ imagining it. That’s as close as anyone would ever want to get to these events, leaving those of us untouched by this type of profound loss to marvel at the bravery and resilience of those for whom this is all too real.
Collette believes she will see her little girl again some day. Her four-strong family unit endures. “I do still go to bed and pray that I will dream of her,” she says.