Supporting Siblings of Terminally Ill Children

While pregnant with her fourth child, Danneka and Andrew were told that their baby had a problem with his bowel, but that it could be rectified at birth. Unfortunately, that did not go to plan, and, once born, their baby Ellis ended up staying in hospital for more than 11 months of his first year of life.

“At my 20-week scan, doctors told Andrew and I that our baby had loops in his bowel which meant that food could not move properly through the digestive tract. Doctors said there was a simple procedure to rectify the issue, and that he’d be in hospital for two to three weeks when that happened. However, they ended up having to remove three quarters of his bowel, which left him in a much more vulnerable state than we had anticipated,” says Danneka, Ellis’ mum.

With three other young boys at home, Danneka and Andrew faced a tough and uncertain road ahead.

Initially, Ellis spent two weeks in the Paediatric Intensive Care Unit, and had to be put on a ventilator to help him breathe. He had a tube inserted under the skin on his chest through which he was fed, and medication administered.

“The nurses on the surgical ward could see that I was really struggling to balance looking after my three boys at home, with spending time with Ellis in the hospital, so they referred me to Rainbow Trust”, remembers Danneka.

Danneka couldn’t be at the hospital with Ellis every single day. Her other boys are only three, six and eight years old, and before Ellis was born, they’d never left her side so it has been tough for them and they’ve struggled.

“Shelly, our Rainbow Trust Family Support Worker, came into our lives and immediately we felt a difference. Shelly was able to visit and sit with Ellis in hospital on the days that I was at home looking after his three brothers. Knowing that she’s there for him, someone he knows and is so happy and comfortable with, means so much to us.

Shelly was also a huge support to me on the days I was at the hospital too. She would play with Ellis and keep him busy while I spoke to doctors and focused on listening to what they were saying.”

Shelly also takes Ellis’ brothers out, giving them emotional support and the opportunity to enjoy time away from the daily worries of having a seriously ill little brother.

“Rainbow Trust and Shelly’s support has taken the pressure off us massively, and helps me deal with that feeling of guilt. Without her, life would have been very, very stressful, and far more upsetting for all of us”, says Danneka.

Rainbow Trust Family Support Workers help children to keep up at school, as well as enjoy days out with siblings or time to talk to someone who understands what they are going through. They help the family get to hospital appointments and stay with them through long treatments, so they aren’t alone.

Please donate to Rainbow Trust’s project to help us support more families like Ellis’s who are caring for a seriously ill child.

Thank you

Links:

• Meet Ellis and his family