What to do: children and bereavement

Sometimes Aedín O’Leary has to bite her tongue when she hears people talking about how they are not bringing children to a funeral.

“I know it’s terribly sad and you don’t want to expose your children to any unnecessary trauma,” she says. But they can just think a person has disappeared. It’s important for closure.

She and her husband, Niall, have had several close family bereavements to steer their children through, including the death of their baby brother.

Aedín was five months into her third pregnancy before there were indications there might be a problem. But it wasn’t until a few days after the birth in Holles Street hospital that Oscar was confirmed as having the genetic disorder Edward’s syndrome.

He spent nearly two weeks at home in Blackrock, Co Dublin, before he died aged one month and a day on July 5th, 2004. Their eldest child, Katie, who was nearly five, was more clued in to what was going on than her other brother, Harry (2).

“We tried to explain to them how he was sick and he was going to go to heaven. Then when he did die, they were sad but you know what kids are like, they’re sad one minute and the next minute they are talking about Barbie.”

They had been advised to use the words “die” and “death” to the children rather than ambiguous euphemisms such as “he fell asleep” or had “gone to a better place”.

Oscar was waked at home and then Katie and Harry went to the funeral. Some people think that’s a bit heavy for little kids, says Aedín, but she and Niall felt it was the right thing, although they did arrange for the creche to take them straight after the Mass, rather than going to the graveyard.

Some time afterwards, Aedín remembers driving home from creche one day when Katie started crying in the back of the car. She asked what was wrong.

“She said: ‘Everybody says he’s an angel now. I don’t want an angel – I miss the skin of him’,” articulating how she didn’t want people placating her with talk of “angels”.

Second bereavement

Four years later, the sudden death after a brain haemorrhage of Aedín’s sister Nuala, at the age of 41, was another huge bereavement for Katie, Harry and their youngest brother, Conor, born 15 months after Oscar’s death. Nuala had been Katie’s much-loved godmother and she took ill and went on a ventilator just two days before the little girl’s First Holy Communion.

Nuala had been wondering what to get Katie as a Communion present and Aedín suggested she wait until after it was all over and then get her some earrings, as she was going to have her ears pierced afterwards.

However, a week beforehand, Nuala suddenly decided to bring Katie to a Build-a-Bear Workshop instead, along with Harry.

“I am so glad that she did go ahead – they have those teddies to treasure,” says Aedín. Nuala’s death was a huge wrench, particularly for Katie.

“By the age of eight, she had been exposed to [the deaths of] two very close relatives. My sister was laid out in the funeral home and she did go in to have a look, but she came straight out again and that was fine and she didn’t want to go back in again. Whereas Harry was in and out – it is a very individual thing.

“What is right or wrong there, I don’t know. Maybe just to have the choice.”

Four years later, Aedín’s mother died just a day after Katie’s Confirmation.

Based on her experiences, Aedín believes in involving children as much as possible – to the extent that they are comfortable with it – in funerals.

“You have to make a judgment,” she says. “No two kids are the same.”

‘Think adult, think child’

A passion fuelled by professional expertise and personal experience is what drives Sir Al Aynsley-Greene to campaign for better support for bereaved children.

A paediatrician and later the UK’s first commissioner for children, his career was forged after losing his father at the age of 10. He remembers sitting alone on a bench playing with a toy truck in the waiting area of a hospital where his mother was visiting his father, who had been operated on the day before.

After several hours, he was surprised to see his aunt, who told him: “Your daddy has just died, and you have to be the man of the family now and look after your mum and sister.”

He was later to learn that his father had begged to see his son before he died, but it was hospital policy not to allow anybody under 16 to visit patients on the ward.

That day young Al’s life had changed in an instant and he resolved to become a doctor to “stop other boys’ and girls’ mummies and daddies dying”.

Some 40 years later, he was watching a television documentary about the UK charity Winston’s Wish, which runs residential weekend camps for bereaved children. As the children let off helium balloons containing a message for the loved ones they had lost, Aynsley-Greene wept uncontrollably.

It was an outpouring, he says, of pent-up anger about not being allowed to say goodbye to his father before he died, nor to see his body when it was in their sitting room before the funeral.

“Think adult, think child,” is his mantra to professionals caring for a dying adult, as he told the recent St Luke’s symposium in Dublin. He will be back to address the Irish Children’s Bereavement Network conference on November 18th. They need to ask what does this mean for the children of the family – “they may be the only people to ask that question”.

While the hospice movement is very good, he says, there needs to be much more focus on how unexpected death is handled in hospital emergency departments.

What children need

There is hard evidence of what is most important for bereaved children, he says. This includes:

* For death to be seen as part of life – in wider society and within families;

* Information and education on what death actually means;

* Careful listening to encourage them to talk about how they feel. In his experience they bottle up their feelings because they don’t want to upset their families, or they may feel guilt. For example they may wish they hadn’t had an argument with the deceased before he went off on his motorbike;

* Help to come to terms with their grief. Part of this is meeting other children to share experiences of bereavement;

* Access to support. But, Aynsley-Greene stresses, it is very important that bereavement and grief are not seen as medical issues. “Countless families survive very well, despite the difficulties, and there is always the risk of medicalising what is a natural phenomenon;

* Addressing of their fears and anxieties. For example: “My sister has just died from cancer – will I get cancer?