Special kids - children with life threatening illness

Parenting children is difficult enough. Raising a child with a progressive, life-threatening illness can have a devastating impact on a family. Messy rooms and belated bedtimes take a backseat to concerns over medical costs, hospital procedures and the constant worry about their prospects of surviving.

When a child is sick, the family worries. When a child has a progressive life-threatening illness, the family can be destroyed.

When Sally McIntyre* lost her daughter, Molly*, seven, to leukaemia four years ago, she thought the real battle would be in overcoming the loss of her only child. She didn’t imagine that she would also have to grieve for the death of her marriage.

‘But the counsellor told me that sometimes, when there’s a big tragedy within a family like us losing Molly, families just don’t stay together. There’s too much pressure. There’s just too much sadness,’ she says. ‘Something like this affects you in so many ways you don’t realise.’

Her husband couldn’t come to terms with his own feelings and refused to talk about them. Sally says that the way he treated her sadness was to ignore it and pretend it wasn’t happening. That he wasn’t emotionally available to deal with her grief made Sally feel isolated and alone. Feelings that she is only recently overcoming.

Without other children to keep them connected, Sally says that her relationship with her ex-husband has disintegrated to the point where he refuses to speak to her. ‘I think that it’s his way of pretending the whole thing hasn’t happened. By not seeing me, it’s a way of forgetting Molly. Forgetting that he ever had this loss,’ she says.

Sally says that while she can understand why it happened, the marriage breakdown still distresses her. A new relationship has recently eased the loneliness but she feels that, by ending the partnership that created her daughter, the memory of Molly has been diminished. ‘I still think that we should celebrate that we even had Molly. She was a beautiful little girl.’

When Suzanne Summers lost her son Brodie to cystic fibrosis at the age of thirteen, life as she knew it changed. It had been different for a while anyway. During Brodie’s long battle with the disease, the effect on Suzanne’s family had been immense.

Her other two children, Jarron, now 8, and Celeste, now 9, became used to living with a mother who was rarely there. Brodie was often in hospital and even when he was well enough to be at home, his illness still made normal things impossible.

‘When Brodie was alive we knew he was sick and it was quite visible – there were things he couldn’t do. We couldn’t ever do what normal families did,’ says Suzanne. ‘I suppose the grieving started there, then once he died the grief really did kick in. It became even more complicated when my husband and I separated about six months after Brodie died as then they had the loss of two male figures in the family and this was particularly hard on Jarron.’

At the time of Brodie’s death, his mother says, Jarron almost didn’t react.  ‘It could have been his age – he was about four – but he was very quiet about it, whereas Celeste was very dramatic and very upset and really wanted to talk to people about it,’ Suzanne says.

That Brodie’s illness and the spectre of his eventual passing dominated their lives for such a long time hasn’t lessened the impact of their grief and its effect on the family unit. What it has done is set them firmly up in a network of support and open communication that will, Summers hopes, soften the long-term effect.

The family’s involvement with Melbourne-based support organisation, Very Special Kids, has always given them a place where they could talk. ‘You can’t always drop your guard with normal friendships but here they’ve got friends who have had brothers and sisters who have died and they seem to be able to relate really well with them.’

For Jarron and Celeste, much of this contact comes from their participation in what Very Special Kids call the Sibling Program. The inception of the program in 1996 followed a major evaluation of the organisation’s available support services.

‘The parents actually identified that they wanted some support for their children,’ says family support team manager, Andrea Murphy. ‘We decided to start up some sibling group work to address the need. Some may have significant grief and loss issues.’

Describing the program as a ‘preventative mental health strategy’, Andrea says the program caters for children between the ages of five-13. In addition to individual counselling, if requested, the one-day sibling days operate during the school holidays. They aim to build on the children’s existing strengths and abilities and enhance self-esteem.

The children are here to have fun and through a range of activities, they can express their thoughts and feelings in a safe environment. They just know that they’re surrounded by people their own age who have also experienced the endless runs to the children’s hospital and the absences of mum or dad, while their sister or brother gets sicker and sicker.

Although they experience the same flood of emotions as adults, children do work through and communicate their grief differently, according to Andrea. ‘They’re often unable to verbalise their emotions so they do it through behaviour. It might be that they have mood swings and need more attention. ‘Sometimes it’s more aggressive behaviour and sometimes, in a crisis, the child can actually regress'.

‘We work with the families and recommend that parents are honest with children and involve them with what’s happening because children are part of the family story. It depends how old they are and how much information they can take on board,’ she says.

Last holidays, Jarron and Celeste went to the day aimed at bereaved siblings (there is a separate program for siblings who haven’t lost a brother or sister). They took along a photograph of Brodie and placed it on a memory table surrounded by other mementos of children who have died. They were asked to talk about their brother and what was special about him.

For Jarron, it was that he used to play with him. ‘I just miss him,’ Celeste said. The grief has changed for them over time and they probably have a deeper understanding of it now. Do they talk about their sadness

That’s constant. Jarron will just lately come up and say ‘I wish Brodie was here’, or ‘Brodie would have liked that’. Or they’ll do things like pull out photos. How I react depends on how I’m feeling at the time. When Celeste plays the song they played at Brodie’s funeral (The Day You Went Away by Wendy Matthews) sometimes I’ll sit there and sing or dance with her, or sometimes I’ll just go and do my own thing but I always acknowledge that I miss Brodie too.’

Little Courtney Quine, 4, is fresh out of Melbourne’s Royal Children’s Hospital, having had a liver transplant that saved her life. For her parents Carolyn and Robert, the transplant has been what they hope is the end of a difficult journey through Courtney’s illness. An illness that has impacted on the family, including two-year-old son Lachlan.

‘When we first found out she was ill it wasn’t that bad – they always thought she was doing well,’ Carolyn says. ‘Then she got really sick.’  The change in Courtney’s health has impacted on the working and financial lives of her parents – Robert was forced to take months off work to help care for her and Carolyn gave up her part-time job.

Emotionally, Carolyn says her family has been coping well. The news since the transplant has been good and Courtney’s health, Carolyn hopes, is only going to improve. ‘It will still affect us down the track because she’s missed a lot of pre-school and that may affect her start at school. We might need an integration helper at first. These are the things that you don’t think about when a child is sick,’ Carolyn says. ‘There are a lot of effects.’

* names changed to protect privacy.

Very Special Kids

Very Special Kids is a unique Victorian organisation that improves the quality of life for families who have a child with a progressive life-threatening illness.

Families can contact Very Special Kids directly by telephone on 1800 888 875, or by referral through the Royal Children's Hospital, the Monash Medical Centre, doctors or through other support organisations.

Currently supporting over 650 families throughout Victoria, Very Special Kids is a free service largely funded through donations, corporate sponsorship and a state government grant. It currently costs $2.6 million per year to sustain the service.

Very Special Kids also operates Australia’s first respite care and hospice facility for children – Very Special Kids House. The House has round the clock nursing care with doctors available to families 24 hours a day. 

Paradise Kids

Paradise Kids is based on the Gold Coast in Queensland. It began in 1996 as a division of Hopewell Hospice Services Inc. and provides free support services for children and their families suffering from terminal illness, grief, loss or trauma. Paradise Kids helps by supporting the grief and healing process of both children and parents, and by teaching parents how to support their children who are grieving.

Contact (07) 5574 6853 or visit their website.

Siblings Australia

Siblings Australia was originally established in 1999 at the Women’s and Children’s Hospital, in Adelaide. Its primary aim is to develop and co-ordinate services for families, and in particular, brothers and sisters of children with special needs (disability or chronic illness).

Contact (08) 8161 6737 or visit the Siblings Australia website.   

By Claire Halliday

This article was first published in Australian Family Magazine, November 2003. Updated July 2009.