Supporting Siblings of Terminally Ill Children

I am a Rainbow Trust Family Support Worker and would like to share a typical day with you.

Neonatal care has been especially difficult during the pandemic for parents of premature or seriously ill babies.

Visiting can be complicated by the distance that parents may need to travel to see a seriously ill baby and short and infrequent visits can create a barrier to caring and bonding activities, which can assist in a baby’s development.

We support many parents with seriously ill babies, and today I drove to collect a mum from her home and took her to Princess Anne Hospital in Southampton so that she could see her baby, who was born prematurely at 27 weeks.

Currently she can only see her baby twice a week, as travelling to and from the hospital is difficult for her without support.

On the way there I provided some emotional support, I listened to her talk through her concerns as well as the positives surrounding her baby and home life. Once I had dropped her off, it allowed her to have a few much-needed hours with her baby. I then collected her from the hospital and drove her back home, where we chatted more about her baby's progress.

I also visited Tony, who is 14 years old, and his family. Tony has Sanfilippo Syndrome, a progressive disorder which means that he has very little mobility, is non-verbal and his mum is his full time carer.

I collected Tony’s sister Amelia, nine, from school and walked her home, we chatted about how her day was and all the amazing things she has been learning about.

Once home, I was able to talk with their mum about how the whole family had been since my last visit.
Today's session with Amelia was more of a sensory experience, where we made some slime together - which she really enjoyed - and then we played with her Lego.

Sibling support is a really important part of our service. It can play a vital preventative role, helping children to learn coping mechanisms, find an outlet for their strong feelings and worries, build a support network – as well as having some much needed fun. My visits with Amelia are very much play and craft-based and allow her to talk openly to me about any worries that she may be feeling regarding school or her brother Tony, in a safe space while doing the things that she loves.

Family Support Workers like me help families with a seriously or terminally ill child practically and emotionally.

It is only thanks to your donations that we can give life-threatened children and their families this expert support for as long as they need it. Thank you for all you do to enable this.

Links:

• https://www.rainbowtrust.org.uk/