Physical Health United Kingdom Project #6588

Support Families Who Have a Terminally Ill Child

by Rainbow Trust Children's Charity

Support Families Who Have a Terminally Ill Child

Project Report | Mar 21, 2022
Amy's experience of Rainbow Trust support

By Hanne Widmer | Project Leader

Henry, very ill in hospital

Family Support Worker Brodie helps Amy and her family whilst Henry is on the neonatal ward and at home

Amy was referred to Rainbow Trust in January 2020 by the neonatal team at Burnley Hospital, while her son Henry, then four months old, was an inpatient, awaiting open-heart surgery.

During the pregnancy Henry was diagnosed with Down’s syndrome, as well as a heart condition called atrioventricular septal defect and cardiac failure. All this was very worrying for Amy and she wasn’t sure how she would cope with it.

When Amy started receiving support from Family Support Worker Brodie, she was staying at Parent’s Accommodation near the hospital with her other son, George, who was two years old.

Being at Henry’s side and caring for George was very difficult and immensely demanding. Amy felt very alone, isolated and she was struggling to cope.

Brodie supported the family at the hospital. She would sit with Amy at Henry’s bedside offering emotional support, someone to talk to. She would take George out to play so Amy could spend time with Henry without worrying about entertaining and looking after George. Brodie would also sit with Henry so Amy could go and spend quality time with George.

This support meant Amy did not feel guilty about spending time with one of the boys and not the other; she knew each week that she would have that time, as well as someone to talk to. Amy really welcomed this help because it made her feel less isolated and gave her respite from looking after and worrying about both boys.

When the pandemic hit in March 2020, visitors were no longer allowed in the hospital due to COVID-19 restrictions. Unfortunately, this coincided with Henry’s open-heart surgery.

Whilst Brodie was unable to go into the hospital, she continued giving Amy support. They would regularly speak on the phone, giving Amy that constant emotional support, someone to talk to, to discuss her concerns. Brodie was able to give her advice and reassure her when she needed it the most.

After a couple more months in hospital Henry was improving and the consultants discharged him. This was wonderful news for Amy: she was finally able to leave the Parent’s Accommodation near the hospital and go home with her boys.

In November 2020 Amy felt that she no longer needed Brodie’s support and they agreed to stop. Amy continued to get in touch with Brodie every so often when she needed advice. She said, “I’ve always felt that Rainbow Trust’s help was the only support I could turn to. Family Support Worker Brodie was always happy to help.”

Things changed in May 2021, when Henry was admitted to Blackburn Hospital with serious breathing and chest problems. He now requires oxygen 24 hours a day. Knowing where to get the support she needed, Amy immediately contacted Rainbow Trust and Brodie started helping them again as they were struggling with many of the same issues as before.

Due to ongoing restrictions, visitors were not allowed on the ward, except for medical or social care professionals, and Amy was again feeling isolated. This time she wasn’t even able to see her eldest son, George.

Thankfully, as a professional, Brodie was able to give respite care on the ward and sit with Henry while Amy had a break and spent time with George. Brodie has also stayed with Henry to enable Amy to go home and get the house ready for their return.

Now that the family are back at home Henry still needs oxygen 24 hours a day. Brodie continues to support Amy’s family, giving her respite and emotional support until Henry recovers.

Amy told us: “Having Brodie by my side has been transforming and such a relief. I don’t know how I would’ve coped all alone."

Thank you for your support.

Henry giving Amy a lovely kiss

Henry with older brother George

Henry and Family Support Worker Brodie

Links:

Watch a short video about Rainbow Trust's impact

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Nov 23, 2021
Family Support Worker Marlene and Oliver's family

By Hanne Widmer | Project Leader

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.

Oliver very ill in hospital

Big brother Thomas with Oliver

Family Support Worker Marlene and Oliver

Links:

https://www.rainbowtrust.org.uk/

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Jul 27, 2021
Providing a trusted constant throughout long illness

By Hanne Widmer | Project Leader

Family Support Worker Sarah with Erin

The nature of life-threatening and terminal conditions in children is such that many families find themselves living under intense uncertainty for long periods of time. Their lives can change dramatically over that time, and so having a trusted constant throughout to help navigate the changes can make a positive difference in their lives.

Erin is seven years old and has multiple long term and life-threatening conditions, including heart, kidney and liver disease, vasculitis and severe hypertension. Erin has had sepsis many times and has an autoimmune disease that causes the body’s immune system to attack and kill blood cells. Erin has to date received 112 blood transfusions.

Family Support Worker Sarah started supporting the family in 2015 when Erin was a baby after a referral by a Community Nurse. Initially, Sarah helped out with hospital appointments, driving mum Helen and Erin to London, so she didn’t have to worry about parking or traffic, which Helen says was an enormous relief. Sarah would care for Erin so that Helen could have a break.

Erin was very fragile, needing constant care, which made it very difficult for Helen to live a normal life. Helen was unable to work and they were forced to move in with her father, Erin’s grandad Phil, due to the pressure of finances. Sarah also supported Phil when he began to struggle with the pressure of caring for Erin, and the regular stays in hospital.

Five years on, Sarah continues to support Erin and her family. Erin is now seven years old and she suffers with loneliness due to her inability to play with others, because she is so seriously ill. She does not have many people in her life, but Family Support Worker Sarah is a trusted constant, reducing the family’s isolation and giving them opportunities to have fun together.

Erin has multiple appointments with specialists, she takes 17 types of medication and has frequent blood tests. Sarah has helped to join up the services supporting Erin, liaising with professionals to ensure consistency in Erin’s care.

“When others could not be there with us, when we were in very vulnerable situations, Sarah’s been there. She has given us both support and friendship. She has been present and by my side in awful and traumatic medical consultations where we have received terrible news. She listened and was there for us. You do not want to have to repeat or recount that to anyone, and with Sarah you do not have to as she was there by our side. Even if Sarah cannot be there in person, like during lockdown, just a phone call makes all the difference as she knows what to say to me. Sarah understands and is there for us both.”

Rainbow Trust Family Support Workers provide bespoke continued support to families like Erin's, helping to negotiate life after a diagnosis. We offer practical and emotional support to the whole family, through their darkest times.

It is only thanks to your donations that families like Erin's have the help they need. Thank you for your support.

Erin makes a rainbow in lockdown

Erin with grandad Phil

Mum Helen, Erin and Family Support Worker Sarah

Links:

Rainbow Trust Children's Charity home

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