Supporting Siblings of Terminally Ill Children

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/

Phoebe’s mum, Katie, first discovered that Phoebe was not well in February 2020 when Phoebe was two and a half years old.

She had been sick in the night and was just not herself when Katie found a big lump on the right side of Phoebe’s stomach. Katie and Matt, Phoebe’s dad, took her to hospital where she had a scan.

After the scan Phoebe was rushed for an ultrasound. The surgeon told them later that Phoebe had a stage two Wilms’ tumour (cancer found in the kidney). They were left feeling scared, hurt and angry.

Phoebe has a seven-year-old brother, Rory, and Matt and Katie were worried about how he would cope, how would they explain that Phoebe was very ill and that they had to be away from him for a whole week.

Katie and Matt were in hospital with Phoebe initially for seven days. She had MRI scans, CT scans, blood tests, a Hickman line fitted and her first dose of chemotherapy to shrink the tumour in that first week. They went back home for two days, and then back to hospital for the next dose of chemotherapy, which would continue weekly.

Phoebe had an MRI scan to check if the tumour had shrunk. As it had reduced significantly, just after last year’s first national lockdown started, Phoebe went back to hospital to have her kidney removed.

Due to lockdown only one parent could be there, and Katie and Matt juggled this between them. One week after the operation Phoebe was back on chemotherapy for 27 weeks, a double dose at hospital and a single dose at home, administered by a nurse.

The uncertainty that all of this brought to Katie and Matt was devastating. Katie was not coping well with her own mental health, confused about how to feel and process everything.

They were drained and exhausted.

They were referred to Rainbow Trust for sibling support and Family Support Worker Wendy started supporting Phoebe’s brother, Rory, in April 2020. Katie and Matt were concerned that everything going on with Phoebe would affect him and that he wouldn’t open up. But Katie told us “Wendy’s presence and personality has had a huge impact on both kids. Rory is very quiet, but Wendy brings him out of his shell. The energy Wendy has with them is effortless and some days we can hang back and enjoy watching them have fun with Wendy.”

Katie and Matt have a very supportive wider family, but they found Phoebe’s illness had an effect on many relationships and friendships.

Katie lost touch with a very close friend because they couldn’t deal with Phoebe’s illness. This has also had a detrimental effect on Katie’s emotional wellbeing, so Wendy has been giving her emotional support. Katie says, “Wendy always has time to listen and, although she supports the whole family, somehow she manages to support us all individually.”

Phoebe finished her treatment in October and rang the bell at Bristol Children’s Hospital to celebrate, a joyful moment for Phoebe’s family and hospital staff.

Due to the pandemic, Wendy had to adapt the way she supports the whole family. They have enjoyed going out for walks, scavenger hunts, singing, doing quizzes, doorstep delivery of Christmas gifts, virtual calls, including reading stories, and anything else the family may need.

Katie says, “We embraced Family Support Worker Wendy’s support; there is no need to be alone. You may have initial concerns that you may not connect but once you do you feel like the weight has been lifted. Life without Wendy would have been so much harder.”

Your donations make this work possible for families with a seriously ill child so we are very grateful for each and every donation we receive.

Thank you for your support. 

Links:

• You can watch Phoebe ringing the bell here
• Rainbow Trust Children's Charity home