Hello, my name is Chloe and I have a little sister called Ella who has Hypoplastic Left Heart Syndrome; I am seventeen years old and Ella is ten years old.
Through the years I have learnt about what the person with the condition is like and read about what they go through, but I have not read much about what the sibling feels and goes through; I am going to talk about how this has affected me and hopefully help some other siblings along the way.
When I was younger I always wanted to know more about my sisters condition, I always had questions which I wanted answering such as “When does she need a transplant?” or “What is going to happen next?” These were unanswerable questions which I found distressing and annoying, not knowing the answer. I have always been intrigued by Ella’s condition and have wanted what is best for her and to help out in any way; even though it was hard understanding that our normal is everyone else’s abnormal it made it more our challenge and more special. I remember when I was smaller I used to go to charity events with Little Hearts Matter and Young Hearts, I met a few people the same age as me and smaller children who had similar or the same condition as Ella and felt much happier that she was not alone and there was always some help for me, my family and most importantly Ella.
When you are younger yes you might feel jealous—I was at some points because I thought that Ella was getting all of the attention but as I grew older, I realised that it is about all of us and there is no point in being jealous because she needs more help than the average person and that makes her special.
As I grew older and into my teens, it is much easier to understand the condition but it is also harder in some ways. You have other stresses to worry about and it can build up over time, then if something little comes up with your sibling, which at that moment in time you don’t understand, it may make you react and get a bit angry over it.
I am not saying that it is all doom and gloom; it is a gift to have Ella in mine and my family’s life, she gives so much with a smile on her face ( I know it sounds cliché but it is true). It’s lovely to watch programmes with her and just to listen to Ella describing all of the things which are happening to a person or what needs to be done to make a person feel better. She is a talented young girl who I’m sure is going to grow up to be amazing in the things she does.
Growing up with a brother or sister who has a single ventricle heart means there are good times and difficult times. It is like this in all families even without disability or illness. Sometimes siblings like being with their brother or sister; sometimes they don’t. This is normal. It is normal to feel caring and protective, and sometimes to feel fed up and irritated with your brother or sister.
If you’re a brother or sister (sibling) of someone with a single ventricle heart condition, why not check out Sibs? They have a lot of information and support available that you might find useful. They have a special Young Sibs website—this is for brothers or sisters aged between 6-17. (They also have information for adult siblings too, if you’re older than 17)