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Christine died aged 13 from
cystic fibrosis. She first came under my care when she was 10 and as well as
suffering from advanced lung disease, she had hepatic cirrhosis. Nevertheless,
she was coping with ordinary school and a year later won a scholarship to the
local convent grammar school. There, with great courage and despite failing
health, she managed to keep up with her peer group; something she was
determined to do at all costs.
During the last year of her life,
Christine’s last clinic attendance, she asked me if she could see me alone,
without her mother. The request surprised me a bit but the reason surprised me
even more. She wanted to know if she could be an organ donor or whether,
because she had cystic fibrosis, she was “not good enough”.
Though I guessed that because of the way she was likely to
die her request would be impractical, I was anxious that she should not feel
unsuitable and thus inadequate. The last thing I wanted was to reinforce the
damaged self-image from which so many chronically ill children suffer.
So I told her that I considered
anyone getting her organs – or most of them – would be a lucky person, but we
joked that we would not give her lungs to her worst enemy. I saw no reason to
tell her that she had liver involvement and told her to get a donor card.
Christine was already in hospital
when she produced the card but despite being desperately ill insisted that I
help her to fill it in.
I was worried about what was in
Christine’s mind and wondered whether it was one of those obscure signals
children can give, indicating that they want to talk. Two children she had
known with cystic fibrosis had recently died and I thought this might be
troubling her. Or, aware that she was dying, I wondered if she wanted some part
of herself to live on. So I sat on her bed that day and asked her why she
wanted to be an organ donor. She simply replied that she had seen an appeal on
the television. No more.
Christine never did say any more
to me or anyone else, but on the night she died her parents gave me a question
and answer sheet, which Christine had completed on entering her new school. It
was a comprehensive exploration of her faith and character. The most pertinent
comment was her answer to the question, what did she want to ask God for. She
had written: “To help sick children and make disabled people feel wanted.” And
to the question, what were her ambitions, she had written, “To help my doctor
find a cure for CF on me so I can help her to help other CF children.”
If I had known before she died
that this was what she wanted I might have linked it with the organ donation
request and perhaps we could have found an opening for her to discuss her fears
and her aspirations.
The way Christine died did indeed
make her request to be an organ donor in the way she wanted impossible, but
with her parents’ agreement a necropsy was performed. Her involved organs were
donated for the future enlightenment of students who might one day treat other
children with cystic fibrosis.
I always wonder if I failed
Christine by not fully understanding her thinking, and encouraging her to talk.
Dr. Olive M McKendrick,
Paediatrician
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