Nicola Biggs

June 1993:

I was sixteen and sitting my GCSE exams, I had a sister, Emma, of fifteen and a brother, Jon, of fourteen who both suffered from Cystic Fibrosis. My sister had undergone a successful Heart & Lung Transplantation at Great Ormand Street Hospital in 1990. At the beginning of June Emma suddenly collapsed at home. She was rushed to hospital where my parents were informed that one of her lungs had completely collapsed and the other had partially collapsed. As she was so weak she could not be considered for another transplant and they were told that it was very unlikely that she would survive to the end of the week. My parents arranged to have her moved back home. Our house was turned into a miniature hospital with nurse supervision all through the day and a daily visit from her doctor. My father told me that she was not expected to last more than a couple of days, but they did not tell my brother.

I am very glad my sister was able to come home and that the hospital fully supported my parents with her care during this time.

I wish that the nursing staff had talked to me more. I had lived with my terminally ill bother and sister for fifteen years, yet I never felt acknowledged by the nurse's and doctors that were visiting our home.

There were times when I was sat with my sister and a nurse of doctor would be treating her, I would have like them to have talked to me about what it was they were doing. Instead I just felt ignored. I felt like I was living in a world where I was expected to act like an adult due to the circumstances, but was in fact being treated like a child!

July 1993

After a six-week struggle Emma passed away at home on 26^th July. This was a turning point in my brother's health. He was grief stricken, as were we all. Emma was the first person my brother and I had ever known who had died. The weeks that followed Emma's death are a kind of a blur to me now. Due to my brother's rapid deterioration of health we never really spoke about the six-week trial we had lived through. We just focussed on getting Jon through his grief and healthy again. He had never been a sickly child and had copied with his disease very well until this point.

September 1993

On 5^th September Jon was the illest he had ever been, first thing in the morning my parents took him to the hospital very concerned at how ill he seemed. Jon's doctor was away on holiday so he saw someone else. She advised my parents that he was showing side effects of some of the drugs he had been given to try and keep him calm. They were assured that this was part of his grieving and that if they went home in a couple of days they would see improvement. By late afternoon Jon was unconscious, my mother called a friend of hers who was one of the nurse's that had cared for Emma during her hospital stays. She came round and said that my parents should take him to the hospital straight away. We did so and by the time we got there he was in a coma. My parent's were taken away and I was left with my brother, shortly after a nurse case and got me and took me into the playroom where my parents were stood with a doctor. The doctor then told me that Jon was going to die in the next couple of hours. The pain I felt at this point is still with me now and I don't think it will ever leave me. It was a huge shock to everyone. We took him home and in the very early hours of 6^th September Jon died, he never regained consciousness.

On his return my brother's doctor came to see my parents. I remember him arriving at our house and he could not hide his emotions. He spoke with my parents about what had happened. I was not invited in to this conversation. I wish that he would have spoken to me or would have included me in what he was telling my parents.

I know that it is the parent's choice on what siblings are told by doctors, but I feel that the parents should be advised that they should give the other children a choice. Siblings should be asked if they want to know what is happening rather than the parents and doctors thinking that they are protecting them by keeping them in the dark.

I wish that there had been more materials available to me about the illness and transplantation. My parents were given numerous booklets and documents about these things, but none of them were suitable for a teenager to read and try and understand.

When my brother and sister had to stay in hospital I used to hate visiting them as I always felt like I was in the way. I didn't know anything about the things that were happening to them or the machines that were in the room. There is no one that you feel you can ask, as your parents are busy with your sick brother or sister, and nurse's and doctors were just people who walked in and out. I felt very few acknowledged me and would not have felt comfortable approaching them with my questions.

I know that all the professionals that handled the health care of my brother and sister did a brilliant job and I don't question that. I just feel that I was totally left out of everything that happened to my brother and sister. I felt like a spare part in my own family because I was shut out of the illness and everything that happened around that. I wish I had been asked if I wanted to know about it. I know there are children out there that wouldn't want to know, but I did want to be part of it, after all, it was my family.