Helping your child cope with their sibling's life limiting illness

My first child Danica was born in 1994 and my second child Tristan was born in 1996 when Danica was just 22 months old. For 22 months Danica was our only child, the light of our lives and she had our total undivided attention. I knew that things would change when a second child arrived in our family. At that time I knew that Danica would have to share us with the new baby and that our time would be divided. I had little idea then of how much she would be impacted.

I felt so much sadness for Danica when Tristan had his first seizure and he was diagnosed with a life limiting illness at just 12 days of age. The day had started like any other but by the end of that day Tristan had a confirmed diagnosis and all of our lives were changed forever.

I recall coming home and finally getting the children to bed. In the rush to get Tristan to the emergency department Danica had been left with our neighbours. We had never done this before and at that time we did not have a mobile phone to call and check on her. That was the start of Danica being left for hours with anyone who could look after her while we rushed to and from the emergency department with Tristan.

I vividly recall sitting and watching Danica sleep one day thinking about how much Tristan’s birth and diagnosis had impacted her life. Danica had gone from being an only child to not just having a sibling but suddenly becoming the sibling of a child with a life limiting illness. Her world had irrevocably changed for the rest of her life. I immediately felt guilty for not being able to protect her from what lay ahead. Danica went from spending just a few hours a week at childcare to needing to stay there full time.

I recall Danica starting to act out, she wanted a dummy because Tristan had one even though she had never taken one as a baby and she wanted to drink from a bottle. Another behavioural change was her obsession with applying Band-Aids all over and then telling us that she was sick too and needed comforting and attention.

One of the other things that I vividly recall in those early days is a social worker at the hospital recommending that Danica be told that her brother did not have long to live. I do not recall receiving any ideas or suggestions as to how to do this with a 22 month old child. Being Catholic my husband and I talked and decided that the best way to explain to Danica was that God, Jesus and Mother Mary would one day take baby Tristan to live with them in heaven. At that time Danica had a picture of the Holy Family (Joseph, Mary and a young Jesus) hanging in her bedroom so it seemed a simple connection to point to the picture and explain it to her. Poor Danica started having nightmares and did not want to lie in her bed at bedtime. She kept waking and climbing into our bed. It took us a while to work out that she was afraid of the picture and that they were watching her and may want to take her to live with them. We removed the picture and she settled back to sleeping in her bed all night. This has had a lasting impact on Danica and till today even though she is an adult now she is uncomfortable with having any pictures with eyes because she feels like she is being watched.

The lesson that I learned from these early interactions is that as parents we don’t always get things right but I try not to feel guilty because I did the best I could in those circumstances and with the advice that was given to me. If I had to do it over again I would not rush to give such a young child too much information because Tristan ended up living for 18 years and when he died Danica was nearly 20 years old.

by Maria Heaton, CNC Paediatric Palliative Care, Sydney Children’s Hospital, Randwick