Supporting Siblings of Terminally Ill Children

Having twins could be a handful but having one of them with a serious illness is even harder.

Spreading and sharing your time as a parent becomes very difficult while trying to tend to your unwell child.

Simple things like bathing your new babies and their brother can be terribly stressful.

This is Katie’s story.

"When Charlie was born, I knew in my heart there was something wrong: he didn’t look normal and didn’t make a noise. When he was three-weeks-old he went back into hospital because he had a serious chest infection and he kept having episodes which seemed to happen when he was having his milk.

I now know what it was: his little body was working very hard trying to co-ordinate things, drinking his milk and breathing. Charlie wasn’t getting enough oxygen while he tried to feed.

He’s undergone many invasive tests and a range of genetic tests. Next, he is having a muscle biopsy. Doctors are yet to make a diagnosis but for now, at just one, he is fed through a nasal tube, he is slowly building up his muscles and he can hold his head up and is starting to move. Charlie used to be like a rag doll, which made getting him dressed or changing him very difficult.

Charlie has central hypertonia, which means his torso is really floppy, and he’s also hypermobile. With these two conditions he finds it hard to co-ordinate and control his movements. His pharynx and larynx are floppy and when they flop down they block his airways so at night he has a nasal mask to blow air through to stop those bits flopping down and keep him breathing.

When he was three-months-old, it became clear that Charlie was not taking in enough oxygen. He was rushed away, which was awful, and he spent the next five months in hospital.

I stayed with him in hospital as he was my priority, despite the fact that I had Louis, Charlie’s twin brother, and their brother Jacob, my six-year-old, at home.

I had to be with Charlie.

I felt so guilty for Jacob – he not only had two new babies arrived but I was in and out of hospital with Charlie. Jacob had had us all to himself for the past six years and now his whole world was being tipped upside down.

Sadly, Charlie was too unwell to come out of hospital for Christmas so I left a stocking on the end of his cot on Christmas Eve and went home to be with Danny, my husband, Jacob and Louis.

I felt awful leaving Charlie alone but I also had to spend time with Jacob – he knew it was Christmas and he needed me there.

Just before we were discharged from hospital in February, our Community Nurse recommended Rainbow Trust Children’s Charity.

I knew we would need as much help as possible when we went home so Dawn, Rainbow Trust’s Family Support Worker, started supporting us. She visits us three times a week, taking pressure off and helping the whole family in many ways. It’s like having a big sister: Dawn just slots in and I trust her, I trust her with my children and especially with Charlie, who has such special needs.

Dawn spends time with Jacob too, giving him one-to-one time so that he feels special again. She also takes him for days out with other children - siblings like him, living similar circumstances - which has been great for him.

Jacob can talk to Dawn about anything that’s bothering him and he knows that she is there for him. This makes such a huge difference to me – I know it has been very hard for him. One day he told me, “Mummy you don’t listen to me anymore,” and he has a valid point. Unfortunately, I can’t always listen to him like I used to so having Dawn means he has someone special who does listen to him.

Dawn has been amazing; things would have been so much harder without her.

Dawn helps out in the early evening for bath time, which is usually such a stressful time, and she also helps out when I have hospital appointments with Charlie. She’ll collect Jacob from school and look after him and Louis so I don’t have to worry about entertaining three children while I speak to doctors about Charlie.

Looking ahead, Charlie’s prognosis is good. He still has recurrent hospital admissions due to his chest infections and respiratory difficulties and we have to carry an oxygen and suction machine with us but on the whole, he is doing really well. I am really excited about Christmas this year, the idea of Christmas with all  of us together is magical and special for me.

Dawn’s help has been a lifeline: having someone else to turn to, to talk to and helping with all the little things makes a huge difference to my family. I trust Dawn with my family and I wouldn’t want to be without her."

Rainbow Trust’s Family Support Workers like Dawn work with all the family, supporting them in whatever way they need. Donations make this possible for over 2,500 families and their seriously ill or life-threatened child so we’re very grateful for each and every donation we receive.

Thank you for your support.

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