Supporting Siblings of Terminally Ill Children

At 10 weeks old, Dominic was rushed into hospital with swelling and fluid on his brain and underwent emergency surgery to remove the fluid. An MRI scan, four days later, showed a cancerous mass on his brain, spinal column and central nervous system. Doctors told the family that what they were seeing was extremely rare and unlikely to be treatable. Dominic’s parents were told he probably only had three weeks to live.

During the following week, further biopsies and tests revealed the “tiniest glimmer of hope,” remembers Natalie, Dominic’s mum. There was a chance that the cancerous cells could respond to chemotherapy drugs but the consultant was hesitant as Dominic was so small and the drugs would leave him open to any kind of infection. He had to stay in hospital for the next five months and would not leave the ward in that time. Natalie stayed with her baby boy for those five months and worried constantly about him and Zach, her other son, who she could not see. She was isolated and governed by the hospital ward and Dominic’s treatment.  

CLIC Sargent referred Natalie to Rainbow Trust and Vicky, one of our Durham based Family Support Workers. Vicky visited Dominic in the hospital once a week which gave Natalie a few child-free hours where she would “grab a shower or get off the ward and relish the outside air.”

 “Parents who haven’t found themselves in similar situations cannot appreciate the dilemma of having a very sick child confined to a hospital ward. Despite the parent’s need to get away from it all, there is a terrifying fear of leaving their sick child unless they can balance it with the knowledge that their child is safe and cared for. I trusted Vicky from the moment we met, in part due to the fact that Rainbow Trust workers are well known to the other families on the ward going through similar circumstances and everyone sang Vicky’s praises. Primarily though, I felt comfortable leaving my baby with Vicky because Dominic himself appeared to love the time he spent with her.”

During those five months Dominic underwent intense IV chemotherapy and against all the odds, his next two scans revealed that the tumour had reduced in size. He was sent home and allowed to return to the oncology clinic on a regular basis for the next 12 months for oral chemotherapy administered by his parents one week out of every four. Dominic had to have an NG tube fitted down his nose to administer the drugs. 

When Dominic was diagnosed, Zach was five years old and he struggled not having his mum around for those five months. As much as Natalie tried to be there for Zach, she could only do so much. She told him he could talk to her about anything that was bothering him to which five year old Zach replied, “I can’t mummy, you’re never here because you live in the hospital.” Natalie was heart-broken seeing what an impact Dominic’s illness was having on his brother but she was unable to do anything about it at the time. This is where Rainbow Trust’s sibling support came in. Vicky took Zach on days out and to drop in groups where he met other children and families in similar situations. Zach knows his family life is not normal so Vicky has tried to let him do things that can help him feel more normal. At the drop in groups he can talk to other children who also have a sick sibling and he gets to do arts and crafts which is something he loves. The hospitals give their patients the Beads of Courage when they have been through various treatments so doing the arts and crafts at the drop in groups means he can take his own achievements home.

“Rainbow Trust Family Support Workers all know the siblings, they put the hours in,” says Natalie so she felt very comfortable leaving Zach with Vicky and the others as she knew they were aware of his situation and would look after him.

Shelly began supporting the family when Vicky went on maternity leave and Dominic adores her, so much so that “Shelly” was one of his first words. Once a week she visits the family and takes Dominic to soft play where he can play and be like other children his age.

Without Rainbow Trust, Natalie believes that the desperate situation they were in would have been worse. “With their help, they made our unbearable situation more bearable. Until you have walked in the shoes of a parent with a sick child, you cannot understand, but Rainbow Trust does,” says Natalie. “Rainbow Trust comes along and looks after your child for a few hours and you know you can trust them.”

Vicky’s weekly visits meant that Natalie knew she would have that break where Vicky would stay with Dominic and watch over him while Natalie went for a walk, got out of the hospital and walked into town, “just to be with other people in a normal environment. I’d immerse myself in the crowds, make phone calls or take a shower and wash my hair, without any interruption.” Natalie knew Dominic was safe, she knew that Vicky was happy changing his nappies with all his tubes etc and she knew that Vicky was an advocate for her child when she wasn’t there.

 “With Rainbow Trust I didn’t feel that my coping abilities were being judged. Other family members or families were always trying to give us useful advice but unless you’ve been in the same situation it’s difficult to do this,” says Natalie. “Rainbow Trust comes along and puts an arm around you and walks with you, understanding what you are going through.” The Family Support Workers come as often as they can within the confines of their diary. Shelly taking Dominic out has been good for his development as he missed out so much being in hospital and in treatment for so long. She still takes Zach out, picks him up from school and also takes him to sibling groups.

 Now that Dominic is well, Natalie knows that her family does not need Shelly’s help as desperately as others might. “Shelly does what she can. If something arose or we had an emergency, I know I could ring Shelly and I know she’d help,” says Natalie, “Rainbow Trust is fabulous.”