Supporting Siblings of Terminally Ill Children

“Belle was our rainbow baby. She is our only girl and the youngest of five children. At the age of seven months Belle became incredibly irritable. She begun to regress in her development and was continuously in and out of the doctors and hospital,” said Belle’s mum Jemma.

At around 10 months old Belle began vomiting randomly and sleeping more. This continued over the next few months, gradually getting worse. By 14 months Belle slept for 23 hours a day, only waking for pain relief and a bottle. Her development had ceased and her head tilted and drooped.

Jemma and her husband, Lee, took Belle to their local hospital many times but had no answers, despite the severity in her decline.

Desperate, they took Belle to Southampton General Hospital. She was so unwell on this admission that an MRI was ordered that night. Jemma and Lee were told that Belle had a brain tumour that was now so large it occupied two thirds of her brain.

Belle immediately underwent seven hours of surgery, which saved her life. They were able to fully remove the tumour, but Jemma and Lee were told she would never walk or talk: to get at the tumour they also had to remove a quarter of her brain. They were devastated.

Due to the high grading of Belle’s tumour she required 14 months of intensive chemotherapy.

This felt worse than all that they had endured already. During this time Belle was seriously unwell and it was heart-breaking to witness.

They were referred to Rainbow Trust for support and Family Support Worker Mandy has been there for them. Mandy was able to come to hospital and give Jemma and Lee emotional support while Belle was admitted. Jemma says: “This was incredibly helpful. Mandy quickly became a huge part of our lives and is always compassionate to our needs. There have been so many ups and downs during our cancer journey and Mandy has been there throughout.“

The pandemic has been incredibly hard for the family. As Belle has been having chemotherapy, her immune system is very weak so they had to shield. Having five children at home, unable to go out, made things very difficult. The boys would constantly argue; additionally, Jemma tried to juggle home schooling the boys with caring for Belle. At times it felt completely overwhelming to her.

Mandy worked with the children to give them time out from an incredibly traumatic experience and has given emotional support at school for them.

And she has been there for Jemma too: “I was always able to talk to Mandy when things were getting too much or when we had updates from the hospital that I wanted to talk through,” said Jemma.

Bella did start to walk and talk and hit milestones in line with her age. This is beyond anything anyone could have imagined, given she has a large proportion of her brain missing. And she has continued to surpass and surprise all who know her.

Things would've been very different without Mandy by the family’s side. Thank you for all you to do to enable this support.

Links:

• Watch a short video about Rainbow Trust's impact

When Holly’s son Oliver was born at their local hospital, he was immediately rushed to Royal Manchester Children’s Hospital to have emergency surgery at just one day old.

Their first four weeks in Newborn Intensive Care were overwhelming for her and her husband, Dominic. Holly says: “Every single day it felt like we received more bad news, another thing wrong with Oliver. Another diagnosis to get to grips with and another specialist consultant to add to the list. We were completely consumed, overwhelmed and in shock.”

Oliver was diagnosed with a rare condition where you have a collection of birth defects called VACTERL. Each letter stands for a different area where a defect can be present and Oliver has five of the seven defects.

The most complex treatment is for his life-threatening kidney disease. His remarkable renal team kept him off haemodialysis (a procedure where the blood is pumped into a machine that filters it before being returned to the body) for two years, with an ever-changing combination of medicines, special feeds, tube feeding and fluid management.

Oliver’s condition is incredibly complex and means he has considerable ongoing health care needs and his mobility is affected. Oliver has 14 consultants and a further 23 professionals involved in his care.

Marlene has been the family's Rainbow Trust Family Support Worker for three years now.

Marlene has been a Family Support Worker with Rainbow Trust for 19 years. During this time she has helped hundreds of children, parents and their wider families who have been affected by serious childhood illness, in many ways. Each and every family we support is different and their needs evolve over time, but some things are true for everyone who childhood illness touches: when a child is diagnosed with a life-threatening or serious illness everything changes. The pressure on the parents and the brothers and sisters of the seriously ill child is immense and dealing with it can be totally overwhelming. The experience could be utterly traumatic for the entire family.

Holly says: “For me, it’s the hard to describe, intangible things Marlene does that make the most difference, especially to my own mental wellbeing. Being able to talk openly and honestly to Marlene gives me an ‘outlet’ – a way of venting and processing everything.”

The most significant practical thing Marlene has supported Oliver’s family with is hospital transport. Holly and Dominic were both struggling to balance their part time jobs, getting Oliver’s six-year-old brother, Thomas, to and from school and driving to Manchester – a four hour round trip - three times a week.

This was exacerbated by the pandemic as a lot of their support stopped. Rainbow Trust put the relevant COVID-19 measures in place and Marlene started to take them to Manchester once a week. This has made a difference not only on a practical level, but also a financial and emotional level to the family.

Marlene also provides sibling support to Thomas, who needs dedicated time and attention.

If you can help this Christmas please donate today so more families like Oliver’s can benefit from this invaluable support. To some families the help of a Family Support Worker like Marlene is a lifeline.

Please accept my warmest wishes for a peaceful and happy Christmas.

Links:

• https://www.rainbowtrust.org.uk/