Fathers long for a connection with their children, says Mark O’Sullivan, and he forged a great bond with the eldest of his four children, Naoise, through a passion for mountain biking.
“He was always into the outdoors. I am an avid mountain biker and I had started to bring him biking and he was getting really enthusiastic about it.”
Three school friends of Naoise would often go on the trips with him and Mark had bought a pick-up truck, on the back of which the bikes could be slotted.
“We would go almost every weekend to a different trail or forest around the Dublin mountains,” says the father-of-four who lives in Killiney, Co Dublin. But he was at work one weekday during the school holidays last August, when his wife, Sabrina, brought Naoise (13) and two of his friends to the Ticknock mountain biking trails.
She was with a friend back at base while the three boys were biking, when news came through of an accident.
“Naoise came off a fairly innocuous piece of trail and we would colloquially say he broke his neck –he had a hyperflexion of the head, which caused spinal damage at the base of the skull and he died almost instantly,” explains Mark.
More than nine months on, there is a certain consolation, he says, in coming to terms with the fact that it was an unfortunate accident and there is no thing or person to blame.
Due to what he describes as a “process malfunction that day” at Crumlin children’s hospital, where Naoise’s body was brought, the couple were not seen by the usual team who would attend to bereaved parents. Instead, they were brought straight to the mortuary and his death wasn’t registered.
As a result, instead of being referred for support, “we were left floundering for some weeks and months finding our own way”. (Invited to comment, CHI at Crumlin said they could not comment on individual cases but added that their deepest sympathies were with the parents.)
The O'Sullivans had no idea there was a charity that specialises in family support after the sudden death of a child – FirstLight – until they were told about it by another organisation they had approached.
FirstLight was originally known as the Irish Infant Sudden Death Association when it was founded by Éimear Berry, whose 14-week-old son Brendan had suffered a cot death two years previously. The charity not only offered support to bereaved parents but campaigned for the establishment of a national paediatric mortality register and promoted research to help reduce the incidence of cot deaths.
In 2012, in response to the needs of parents bereaved in other circumstances, and also a welcome fall in the rate of cot deaths, the association broadened its scope to support all families who had experienced the sudden loss of a child under 18 and, two years later, changed its name to FirstLight.
It is the only organisation offering free, professional counselling to families in these circumstances, says its chief executive, Fionnuala Sheehan, both to parents, individually and/or as a couple, and to siblings. This is a message it reinforces with frontline professionals, to try to ensure any who deal with the sudden death of a child will know to refer a family, with their agreement. "In the past year about 60 per cent of our referrals have come from hospitals around the country," she says. "About 40 per cent have been self-referrals, or contact from a relative or a friend."
In addition to one-to-one therapy, it runs professionally facilitated small support groups, which had to be suspended during the pandemic. Instead, they set up three private Facebook groups, one for mothers, one for fathers and a general one.
“We are not a huge charity and please God we will never be,” says Sheehan, considering its brief. However, meeting demand for its services is “an ongoing challenge”. About half of FirstLight’s annual budget of €320,000 comes from the State and it needs to raise the rest.
There was an increase in calls to its 24/7 helpline (1850 391 391) last year reflecting, she suggests, how difficult isolation has been for the bereaved.
Back in 2016, FirstLight supported about 45 families but this number had jumped to 147 in 2020. So far in 2021, it has started to support 52 new families and is continuing to work with another 36 from the previous year.
It [counselling] was somewhere to go on a weekly basis to talk through things that I didn't know were normal or not normal, usual or unusual
Mark was the first of the O’Sullivan family to avail of counselling sessions. “Sabrina feels she has such good relationships with her friends and spends so much time talking through it all, that’s therapy in itself.”
Now Rohan (12), who is closest in age to Naoise, has also started individual sessions. The next youngest child, Rossa, “doesn’t want to talk about his feelings so we are just nurturing him”, says Mark, while their daughter Síofra (five) talks about Naoise non-stop and seems to draw positive, happy feelings from her memories of him.
Mark has found his counselling with Georgia Howard, who is First Light's clinical services director, "hugely beneficial". It was somewhere to go on a weekly basis to talk through "things that I didn't know were normal or not normal, usual or unusual".
She was able “to interpret things and help me to regulate my grief. I found it very easy to talk to her.” It’s not that he doesn’t discuss his feelings openly at home too but, he says, in shared grief moments, with a spouse or a parent, you can’t process your grief in such a detailed way. “You do have to go deep and personal, almost selfishly, into your grief and it is brilliant how Georgia facilitated that, for me to go into the depths of that and explore it and then find a way to come back out and regulate and continue.”
Without these 12 or so sessions, “I would probably be a lot more lost and forlorn,” he says, as the family go through the painful “firsts” – Christmas, Easter and now the approaching summer holidays – with one beloved son and brother missing.
This coming Father’s Day, on June 20th, will be another of those firsts. The O’Sullivans will be doing a Mile in Memory Walk, which FirstLight schedules for that day to acknowledge the grief of dads.
There is still societal pressure on men to “keep it together” after a child’s death, to attend to practical matters, says Sheehan, and to stay strong for the bereaved mother. For the second year running there will be no regional gatherings but families are being encouraged to share photos and videos of their own walks through social media.
The idea of therapy was “alien” to Ray McManus until it was made available to him and his wife, Amanda, through FirstLight. He says he would never have thought about “spilling my guts to a stranger”.
However, since 2018 the Co Meath couple had gone through two miscarriages, one ectopic pregnancy and then the stillbirth of their son, Jamie, last August.
“It was the accumulation of a lot of heartache,” he says. “Amanda was pregnant for the guts of two years and had nothing to show for it at the end. There was quite a lot of upset there and I was looking at her going through this.”
I started to deteriorate. I was getting angry for no reason
While another charity, Féileacáin, the Stillbirth and Neonatal Death Association, supported the couple in creating a memory box for Jamie, a bereavement midwife also referred them to FirstLight. Amanda started counselling almost straight away but it wasn't until early November that Ray felt he needed it too.
“I started to deteriorate. I was getting angry for no reason.” With the help of counselling, he is calmer now and has allowed himself to see Jamie’s death for the true bereavement it is.
“Why is this a big deal – this baby never took a breath,” was something that had been going through his head before that. “I wasn’t giving myself the benefit of seeing things the way they actually are. It was through what I thought other people were thinking, which is really weird.”
Ray went back to his job in the security business within a week of Jamie's death and he reckons it was harder for Amanda working from home. "She never got a respite from the four walls. I was just happy to get back, to be honest." Although he told his boss about Jamie, many of his colleagues would be unaware of what he has been through. "I wouldn't be open at all with strangers."
Even among his male friends “it was still not really spoken about. It was, ‘I know how you feel, my wife went through something like that’ and then that’s where the conversation ended.”
It’s only as we talk that it dawns on him how “bizarre” it is that these men all commented in terms of “what my wife went through” rather than discussing what they as fathers had experienced. “They must have felt the same frustration and anger as I did.”
Before going to FirstLight, Ray says he had never thought about men being overlooked in grief but, in hindsight, he says: “I was sidelined, there is no doubt about that,” in the immediate events around Jamie’s death. “I put that down to the fact that Amanda was physically going through what she was going through and the mental thing was dealt with afterwards.”
Due to Covid restrictions, Ray was sitting in his car in the car park of Our Lady of Lourdes Hospital in Drogheda, while his wife went in for a routine 18-week scan. He had the midwives’ unit number stored in his phone and when he saw it coming up, he knew instantly that if it was good news, he would be getting a call directly from Amanda. He was called to come into the unit.
“The mad thing was that I knew the answer but I still had to ask the question: ‘Is the baby gone?’” Staff had been unable to detect a heartbeat. From that point on it was “horrific”, he says, watching what Amanda went through, delivering their stillborn son and the distressing procedures after that.
Ray and Amanda will be doing their own Mile in a Memory, and they hope talking about the “fantastic” support they have received will help raise awareness of FirstLight and attract donations. “I think it is really important to keep these organisations going,” he adds, “because they help more people than anybody really knows,” except for those unfortunate enough to be using their services.
Mark says being enabled by counselling to interpret and regulate his feelings “has allowed me to work and continue having my relationship with Sabrina, with my family, and continue to do my sports”.
If he’s busy, he can usually “park” his grief for Naoise and wait to deal with it at a quieter time. That’s often at the weekends, particularly when he’s getting his sandwiches ready before going mountain biking.
“I’d often be a mess for about 20 minutes on a Saturday morning because I would have been making two sets and he would be putting the bikes on the truck...”
Read: Helping parents to pick up the pieces
