‘Inside we are broken and nobody can see the scars’

Tuesday, August 21st, 2012 was a great day for five-year-old cancer patient Aoife Hendrick. Not only were her parents told she was being discharged after three months from Our Lady's Children's Hospital, Crumlin, but a photograph of her with Olympic gold medallist Katie Taylor on a visit to the hospital the previous day was splashed across page one of The Irish Times .

“We were on a high,” says Aoife’s mother, Áine. The little girl had been diagnosed with “low-risk” leukaemia the previous May and, although her parents were warned there were two long years of treatment ahead, the survival rate for her condition was 97 per cent.

Unfortunately, after starting chemotherapy, which suppresses the immune system, Aoife contracted an infection. A long stay in hospital followed, to keep an eye on her and to administer intravenous antibiotics, says her father, Adrian. “She wasn’t exceptionally sick or in danger. She was up and around.”

That August day, when Aoife was basking in new-found fame, Adrian and Áine were told she would need only one dose of intravenous antibiotics a day from then on, so she could go home with them to Malahide in Co Dublin and just attend the day ward.

On August 30th, the day before she was due to start school, Adrian bought her a bunch of pink roses before her daily visit to the hospital.

“She showed them to Áine saying ‘this is how much Daddy loves me’,” he recalls. “She was in good form.” And as Áine drove her to Crumlin, “she sang all the way in”.

But she was bit sicker than usual so the hospital decided to keep her overnight. Adrian headed in with her pyjamas, and also her school uniform in the hope of getting her there in the morning.

Shortly afterwards, Aoife’s heart stopped.

“They tried . . .” Áine trails off, but no more words are necessary to conjure up the image of what truly is every parent’s worst nightmare.

“In the end it was a sudden death and nobody saw it coming,” says Adrian. Hospital staff were devastated.

“Things like that don’t happen on the day ward,” says Áine.

“It is like this bomb has gone off in your life,” explains Adrian. Within 12 hours they were back in the hospital, the morgue this time, being asked did they want a full autopsy.

“We both instinctively said we need to know what happened,” says Adrian, because medical staff were unsure what had triggered the cardiac arrest. (They were told later it was probably caused by a seizure due to a fungal infection in the brain.)

Dark and lonely place
After getting through the funeral, Adrian and Áine were plunged into a "very dark and lonely place". It was going to be many more weeks before the autopsy results were back and Adrian felt nobody at the hospital wanted to talk to them until then.

“It is not like the hospital pushed us away,” says Áine, “but they didn’t say come here either.” A liaison nurse told them to ring any time but Áine would not have known what to say to her.

“That nurse hadn’t lost a child and was dealing with living children,” she points out. In fact, the couple didn’t know anybody else who had lost a child.

“We felt we were the only ones. We felt we had been struck by lightning – this does not happen to anybody else. Aoife was sick for three months and in that timeframe we had not met anybody else who had lost their child on the ward.”

They had nobody to ask what happens next in the horrific vacuum in which they found themselves. Their first-born – “a great communicator and singer and such great company” in the words of Adrian – had gone.

Yes, they had two younger children but “we just weren’t able for them” at the time, he says.

Weeks later, after hearing a radio ad for a bereaved parents support group called Anam Cara, Adrian looked it up online. Seeing it was holding an information meeting in Tallaght that October, he went along.

He sat beside a woman, who turned out to be Anam Cara's chief executive, Sharon Vard, and sensed immediately, "She knows . . ."

Later, when Adrian told the group: “I feel like I am circling a black hole of hell. I feel I am on the edge of this abyss and if I slip, I’ll fall,” another woman said she felt exactly the same. As they talked, it turned out she had had a very similar experience, losing her daughter to sudden death while undergoing treatment for leukaemia.

That night Adrian was able to go home to Áine and assure her they were not alone.

“That was a comfort,” says Áine. “You don’t want it to happen to anybody else but you don’t want to be the only ones who are struck by lightning.”

In fact, an estimated 2,584 families on the island of Ireland will suffer the loss of a child this year, according to Anam Cara (calculated from statistics on the death rate in the 0-44 age range).

Sense of loss
Although society views the death of a young child as deeply poignant, the sense of loss for a parent is similar whether your child is five or 55. That was something Sharon Vard and other founding members of Anam Cara realised in the early days.

Like the Hendricks, Vard lost her daughter, Rachel, at the age of five, in 2004. She had been diagnosed with an inoperable brain tumour.

One of the horrors afterwards is that you lose your mind, Vard says. “You think you are never going to enjoy life or get any meaning out of life again.” Even if there are other children in the family, “there is a terrible, terrible sadness that sits on us”.

It was only when she met some other bereaved parents that “I actually felt comfortable enough to say what was really going on with me”, she explains.

As they continued to meet up once a month, word spread and the group grew. It was “completely unstructured; we’d meet at 11am and we could still be there at 4pm. Just chat, chat. It was a safe space.”

As they saw the power of being able to talk to people who really understood, the idea of a formal support network emerged.

Anam Cara was launched in February 2008, its name meaning “soul friend” – a term Vard applies to a mother she met in Crumlin hospital, whose son was diagnosed with the exact same rare brain tumour as Rachel at the same time

“For the world you show one face but for your anam cara you can show what is in your heart.”

While parents whose children die of a terminal illness usually receive some sort of support from a hospital or hospice, in the case of sudden death there is nothing.

No matter how “high profile” the death, she points out, unless there is a really good GP or public health nurse, they won’t be offered help.

“The system doesn’t pick them up. But ‘the system’ is under massive pressure,” she acknowledges. Anam Cara works closely with hospitals, encouraging them to inform bereaved parents about the support it can provide.

“We can’t take the pain away,” says Vard. “The depth of that pain is the depth of the love we had for that child.

“The healthiest thing we can do is face into it and walk through it. What Anam Cara can do is give people some company while they are doing that, so they don’t have to do it alone.”

New group
When a new North Dublin support group is launched with a bereavement information evening in Swords on April 28th, Anam Cara will have nine groups spread around the 32 counties. Adrian will attend the new group and all Anam Cara volunteers involved in face-to-face meetings are, like him, bereaved parents.

When a newly bereaved parent comes in “absolutely wiped, and the person who is on a year, but still wiped, reaches the hand back, it is a legacy of all our children”, says Vard. Although it is not a therapeutic service, there is a professional co-facilitator at groups who can refer people to other services if necessary.

Apart from €5,000 a year from the Family Support Agency, Anam Cara does not receive any State funding. With just 1.5 staff, the charity depends on voluntary fund-raising and corporate donations.

In six years, it has provided services to more than 5,350 parents who have lost a child. The how and when of the deaths are irrelevant; the focus is on the journey afterwards.

Yet when a child is grown up, and maybe has family of his or her own, the focus is naturally on the surviving partner and children. Sometimes the heartbroken parents are overlooked and become the “secondary grievers”.

Vard recalls taking a phone call from a mother in her 80s whose 53-year-old son had died of a brain tumour in Canada.

“She loved him the way I loved Rachel. She was desperately sad and lonely. She made me cry, talking about this gorgeous man who was no longer there.”

Such deaths are totally out of kilter with life. “She said, ‘I was the one who was supposed to die first.’ It is important those parents have support,” Vard adds.

Almost right from the beginning of their bereavement, Áine and Adrian wanted another child, not as a replacement, she stresses, but "two at the table just didn't seem right".

Terrible guilt
But with the pregnancy, six months after Aoife's death, came a terrible guilt and questioning of whether they had done the right thing.

“Guilt that this was Aoife’s mourning time and I am doing something that is supposed to be happy,” explains Áine. She worried about other people’s perceptions, whether they thought it was a terrible thing for them to do, or that it was a sign they were better now – neither of which was true.

“I didn’t know if I would get post-natal depression as I was so, so sad.”

But, again through Anam Cara, they met other couples who had gone on to have another child, which reassured them they weren’t alone in this predicament either.

Family life
Towards the end of the interview at the kitchen table in their home, where the walls are adorned with photographs of a happy, smiling Aoife, a quiet cry from five-month-old Amy signals the end of her nap in the adjoining room. Her older siblings, Róisín (four) and Eoin (three) are at Montessori.

Time passes but Áine and Adrian will never be the same people they were before August 30th, 2012, and they think it’s hard for other people to understand that.

“We look the same, we sound the same. Then there is a new baby so we must be getting better. But inside we are broken and nobody can see the wounds and the scars,” says Áine. “We will never be the same.”

She feels “like a misfit” when she leaves the house. “Of course I don’t know if everybody else is happy but I just assume everybody else is happy. You go to the playground and everybody is happy with their children and I look happy with my children but I have this vast emptiness that I carry with me.”

But the previous weekend she had a sense of belonging at an Anam Cara family day held in Barretstown, Co Kildare, knowing that all the other happy families had a missing child too.

When they got into the car to go home, Róisín announced that “it was the best day ever” – exactly what Aoife used to say.

“It was amazing,” says Adrian. “We were leaving smiling and crying at the same time.”

A psychotherapist specialising in bereavement, Brid Carroll, will address the Anam Cara information evening in Kettles House Hotel, Swords, Co Dublin on Monday, April 28th, 7.30-9.30pm. For information on this, and other evenings in Mayo, Armagh, Tipperary, Galway and Kerry before then, see anamcara.ie or tel 01 404 5378.
swayman@irishtimes.com

Parental bereaveme nt How to help

Parental bereavement is different from other grief. It is more intense and lasts longer than society recognises, says Sharon Vard of the support network, Anam Cara.

Concerned family and friends may want, or expect, you to come back to the person you were after the first anniversary of the death, she says, but in fact you never will.

“We have to find our ‘new normal’, which is a way to live our life still with this continuing bond with our child.”

So what can friends and family do?
Do allow parents to tell their story : "They may tell that story a thousand times," says Vard. "When we tell our story, whatever that story is, and it may be distressing, but every time we tell that story, it helps us realise what has happened."

Don't try to fix it : There is no fixing it because all they want is their child back.

Do offer practical help: "You need someone to come in clean, tidy and mind your children because it is an effort to take your head off the pillow," says Á ine Hendrick. "That goes on for two to three months." A cooked meal dropped in to the house will always be welcome.

Don't take offence: If they don't return your calls or don't invite you in when you knock on their door, do not be offended. They still appreciate the solidarity. "We need to know you're there but don't expect us to respond," says Á ine.

Don't be afraid to mention the child: There can be awkwardness in bringing up the name in conversation for fear of causing upset, but the parents will always be thinking about their child and will welcome all acknowledgement of that lost life.