News and Blog

I watched an interesting show on tv the other night which was quite like the book “My Sister’s Keeper” in a lot of ways. It was on BBC1Scotland called “Hannah: The Girl Who Said No To A New Heart”. That an amazing and inspirational story of someone only 13 years old taking her life in her own hands and making her own decisions on whether to live or die.

Hannah refused a heart transplant knowing she could die and wished to stay well and not get worse and this not be the last Christmas in 2008! Her parents I think should be commended for the way they supported her choices without pushing her into major surgery until she was ready to do it herself. She had to want to live and their decisions could not sway her. Her mother said at that age that she could not physically make her go for a major op and undergo major surgery that could be life threatening and put her to sleep if she doesn’t want to do it!

I can relate to that having had a son aged 8 undergo major surgery and having gone through the past 4 years in and out of Yorkhill children’s hospital and at Great Ormond Street for a second opinion as well. He is now 12 and is very stubborn and difficult to get to the doctors for regular blood testing if he decides he doesn’t want it done. I mean, who would!

This girl had only half a day a week at school as she was too tired. Her heart was too weak. There was a lot of public debate apparently at the time this story first leaked out about whether she should throw her life away and because she may change her mind one day but it could have been too late. Can a child make that decision and can the world stand by and watch this? The parents and I agree with them I must say said ” It’s not our decision”. They felt people who criticised them had not lived in her or family’s shoes on a daily basis or indeed at all!

The local Health trust challenged the decision and took legal advice to remove her from parents which was eventually overruled by the judge after a social worker interviewed her and decided she was a strong character able to make up her own mind. She is determined she can get well herself. The family decided to go on leading a normal family life hoping to see if she changed her decision or not.

Eventually she had a second opinion from the specialist unit at Great Ormond Street hospital which confirmed that she had a very short life expectancy and was much deteriorated medically although she seemed well at home. She had leaking heart valves and the hospital asked her if she had changed her mind. This was 2 years later! She said she had been frightened of needles, not dying, and had had enough of being permanently in and out of hospital but eventually she changed her mind herself and gave the doctors the agreement to proceed with a heart transplant.

Due to the wrong size of heart being transplanted (the only one available in time was too big and her body had to get used to the size of the new heart) she had to have 12 days unconscious with her heart left open then the doctors shut her chest and she was revived! Amazing operation and such a brave girl and a brave family.

Having gone through a lot ourselves I am always amazed to hear stories like this. I know what a stroppy and emotional child can be like if they have been in and out of hospital. Our boy had that at the age of 8 and major surgery and it was hard going. He still is under treatment and takes a pile of medication daily. On the whole given weekly and now monthly bloodtesting he is a happy and normal teenager now but he occasionally has enough and thows a wobbler about not taking the tablets any more and not having any more blood taken. I would be the same myself and I can see why the doctors and the family supported Hannah’s decision.

I just wonder how many people could have done that themselves knowing that your child was highly likely to die if not treated in time. Even I would have found that hard. What are your views? Take part in our online forum questions on this topic. Register on our forum at http://www.labels4kids.com/blog/forum/