Supporting Siblings of Terminally Ill Children

Family Support Worker Jayne gives us an insight into some of the families she supports

I started working for Rainbow Trust in September 2007. The families I support are all very different: they have different needs, the ill children’s conditions are varied, the families’ situations are diverse and living with childhood illness and the trauma and stress this may cause manifests in many contrasting ways.

We listen and help practically without judging. We are there when families who are going through immense pressures and difficulties need us the most.

Noah is four years old with a heart condition and complex needs. Noah has just had major surgery which will hopefully see him into adulthood.

Noah’s mum, Clara, has some family support and I mainly provide face to face emotional support, two hours every week. It is very stressful and isolating to have a child with such complex needs. Emotional support is mainly about listening rather than giving my opinions. I am a sounding board and can suggest techniques to cope with difficult situations, manage negative emotions and I can offer potential solutions that may help in some instances. Sometimes a cup of coffee or getting out of the house with somebody like me could be just what is needed to help keep everything together.

We also talk on the phone twice a week, usually for about half an hour, to discuss anything that may be worrying her, and I go to some hospital appointments with them.

Daniel very sadly died four years ago. He was 12 years old and I had been supporting the family since 2016, following his diagnosis of cancer. They needed practical and emotional support.

I used to go to the house and spend time with Sandra giving her emotional support and helping with household chores whilst Daniel went to hospital for treatment.

Six months after the funeral Sandra told me that she would like to have a stone and plaque for Daniel’s grave. Her husband, Ryan, found this very difficult to cope with so I went with Sandra to the stonemasons to organise the delivery and unveiling.

I now pick Sandra up from home every month and take her to the cemetery to tend the grave. We used to do this every week but this is less frequent now that she is better able to cope. Sandra gets a lot of comfort from these visits. While we tend the grave we talk about her feelings, her grief and about when Daniel was alive.

I have been supporting Caitlin’s family since March. Caitlin is 10 years old and is being treated for a severe heart condition.

Caitlin and her mum, Andrea, had a whole day of appointments at hospital, involving lots of tests, meetings and check-ups to see if she is eligible for a heart transplant.

I drove them to this appointment, leaving home at 5am to pick them up at 6am. Whilst I drove, I listened to Andrea, who was very concerned about what was going to happen at the appointment. We arrived 20 minutes early which allowed me to show her around and try to make her feel more at ease.

Caitlin is scared about what’s going to happen, she knows her heart is not working well. Andrea is very upset because she may not be able to have a transplant. They both need support to be able to cope with this very traumatic situation.

Some days are very rewarding: a family may have positive news, or I can see that my help is really making a difference. It may even be that a family doesn’t need me anymore, which is always lovely because it means that they are doing well and able to cope. But some days can be very challenging. I am a keen gardener and my garden is my sanctuary; gardening is my coping mechanism. We are also provided with specialist supervision from a professional external counsellor once a month or more often if needed.

We also have supervision with our manager once a month and once a week we have a team meeting, where we have the chance to share and support other team members. Being a Rainbow Trust Family Support Worker is a wonderful and very rewarding job.

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 your wonderful support.

Links:

• Sponsor a Family Support Worker like Jayne

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/