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.