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Children with CF decision about surgery
Hi, I just watched the program on CH4 called 'Will I still love my Mum' which was about two 10 year old girls who suffered from Cystic Fibrosis (CF). They had to make a decision about getting a heart and lung transplant which could possibly make them better, but also risk making them worse. In most cases sufferers get so ill, they have no other option but to have the transplant as it's their only chance.
Although the program included the hard decisions the families had to make and how it would affect them, the main point was that if a child under 10 were to be offered a heart and lung transplant it would be down to the parents to make the decision. However if the child was 10 or over, it would come down to them to make the choice. Even if the parents were 100% for the child having the operation, if the child said 'no' then it would not go ahead.
I was just wondering what you thought of this? When you were 10 do you feel you could make such a decision? Do you think they're mature enough or do you think its a bad thing as they may not understand the complications of having/not having the operation? I don't know if my thread should go in the debate bit, or here in the Health & Relationship bit. Just interest in what people thought of this?
Although the program included the hard decisions the families had to make and how it would affect them, the main point was that if a child under 10 were to be offered a heart and lung transplant it would be down to the parents to make the decision. However if the child was 10 or over, it would come down to them to make the choice. Even if the parents were 100% for the child having the operation, if the child said 'no' then it would not go ahead.
I was just wondering what you thought of this? When you were 10 do you feel you could make such a decision? Do you think they're mature enough or do you think its a bad thing as they may not understand the complications of having/not having the operation? I don't know if my thread should go in the debate bit, or here in the Health & Relationship bit. Just interest in what people thought of this?
Scroll to see replies
Reply 1
I think that 10 is probably a sensible age for you to be able to make your own decision, say if you really didn't want to go ahead with it... then at least it'd be in your own hands. By that age I think the child has lived with the disease for long enough to know and decide what they want to do about it.
The chances are that the child will have spoken to their parents about it for a long time and between the two, they should be able to reach a decision on what they feel is best. At age 10, the child can still be easily influenced by their parents and the parents would, if it came down to it, be able to "talk them around" into understanding their point of view and why a transplant would be best for them.
Any younger than 10, then yes I do think that the parents should be able to decide what is best for their child, obviously after having talked to their them at length on the matter. Of course, the child even at such a young age will still be able to let their parents know what they want and have some influence on the decision that their parents will make.
However, the thought of surgery at such a young age must be very daunting for a child, and a child younger than 10 may be too put off by their own fear.
This is why I think that the parents of children under 10 should be allowed to decide, as the child isn't quite old enough to see past the fact that (s)he will be so scared.... but the operation could give him/her a new chance of life. Although this is something for the parents to keep in mind, I think it is right that they have to make the decision.
The chances are that the child will have spoken to their parents about it for a long time and between the two, they should be able to reach a decision on what they feel is best. At age 10, the child can still be easily influenced by their parents and the parents would, if it came down to it, be able to "talk them around" into understanding their point of view and why a transplant would be best for them.
Any younger than 10, then yes I do think that the parents should be able to decide what is best for their child, obviously after having talked to their them at length on the matter. Of course, the child even at such a young age will still be able to let their parents know what they want and have some influence on the decision that their parents will make.
However, the thought of surgery at such a young age must be very daunting for a child, and a child younger than 10 may be too put off by their own fear.
This is why I think that the parents of children under 10 should be allowed to decide, as the child isn't quite old enough to see past the fact that (s)he will be so scared.... but the operation could give him/her a new chance of life. Although this is something for the parents to keep in mind, I think it is right that they have to make the decision.
Reply 2
* gemchicken
Hi, I just watched the program on CH4 called 'Will I still love my Mum' which was about two 10 year old girls who suffered from Cystic Fibrosis (CF). They had to make a decision about getting a heart and lung transplant which could possibly make them better, but also risk making them worse. In most cases sufferers get so ill, they have no other option but to have the transplant as it's their only chance.
Although the program included the hard decisions the families had to make and how it would affect them, the main point was that if a child under 10 were to be offered a heart and lung transplant it would be down to the parents to make the decision. However if the child was 10 or over, it would come down to them to make the choice. Even if the parents were 100% for the child having the operation, if the child said 'no' then it would not go ahead.
I was just wondering what you thought of this? When you were 10 do you feel you could make such a decision? Do you think they're mature enough or do you think its a bad thing as they may not understand the complications of having/not having the operation? I don't know if my thread should go in the debate bit, or here in the Health & Relationship bit. Just interest in what people thought of this?
Although the program included the hard decisions the families had to make and how it would affect them, the main point was that if a child under 10 were to be offered a heart and lung transplant it would be down to the parents to make the decision. However if the child was 10 or over, it would come down to them to make the choice. Even if the parents were 100% for the child having the operation, if the child said 'no' then it would not go ahead.
I was just wondering what you thought of this? When you were 10 do you feel you could make such a decision? Do you think they're mature enough or do you think its a bad thing as they may not understand the complications of having/not having the operation? I don't know if my thread should go in the debate bit, or here in the Health & Relationship bit. Just interest in what people thought of this?
First of all, I have to say, it's a good move the hospital is even letting the mother choose. We watched a video in biotech today about how sometimes the doctors make these types of decisions, and it made me mad
That said, I have to admit - 10 is a little young to be making those sorts of decisions
I remember my little sis said to me, when she was about 9-10 (she's 17 now, lol) , that she wouldn't care if she became blind (she was viewing an ecclipse and I was telling her off for it! 
) because then she'd be able to get a 'cute' blind god 
I was like OMG 
as you can imagine.Anyway a year later I reminded her about that incident, and she completely denied it, and said that if she said that, she didn't mean it
IMO I think 10 is too young to make serious decisions, 12 is a better age, but then again it REALLY depends on the person, so I don't know
Perhaps the decision could be negotiated at that age, if the child is mature enough.
Well there's my two-cents worth
DB_x
The difference witht his children is that they are probably more mature and know a lot about their disease than most people do because they've lived with it all their lives so at 10 a child with a long term medical problem is more mature enough to make these decisions.
Remember at 10 a child is responsible for any crime they commit and is able to go on trial.
Remember at 10 a child is responsible for any crime they commit and is able to go on trial.
I think I agree with those who said that these children know a great deal about their disease and can probably make the decision themselves, although normally of course at that age the parents will be able to talk their children round to their point of view. You've got to up the age limit somewhere, so 10 is probably not a bad choice for that, but if is of course a very difficult situation those kids and their family are in 
.
.
i was watching the show also, it was rather sad that someone so young would have to make a choice like that.. But i think it should be upto the child, the child at the end of the day will have to live with the death sentence or the operation and recovery with the risk of still dying down the line if they organs are rejected. Its difficult and im glad im not in there situation.
I can understand that children with CF are possibly more mature than other kids their age as they've had more to deal with, but still, being given a life threatening situation that you have to make at aged 10 does seem a bit extreme. I think that maybe the age should be raised a little bit, maybe to 13 like Danni_Bella83 says. Although 3 years isn't that long, you change a lot between the ages of 10 and 13, and so may be more able to make a decision. At 10, all you can think off would be how scary the operation is, I don't think they realise the full impliations, whereas if their parents were able to make the decision, and simply said 'you're going to have an operation' then surely the child would do as their parents say, as they trust them? At 13, they would understand the process a lot more, I would have thought.
I've never been in this situtation so obviously I can't comment for sure on what I'd do, but if I was told at 10 I needed to make such a big decision I'm not sure I could, I mean I used to find it difficult in choosing what magazine to get when I was that age, so to be made to make such a hard must be so tough, on the child and thier family.
Anyway I think I've rambled enough
I've never been in this situtation so obviously I can't comment for sure on what I'd do, but if I was told at 10 I needed to make such a big decision I'm not sure I could, I mean I used to find it difficult in choosing what magazine to get when I was that age, so to be made to make such a hard must be so tough, on the child and thier family.
Anyway I think I've rambled enough
Reply 8
if someone said to me that you've got to decide whether or not you want to have a transplant when i was 10, i'd have been dead scared- personally i know that i couldn't deal with that.
* gemchicken
I can understand that children with CF are possibly more mature than other kids their age as they've had more to deal with, but still, being given a life threatening situation that you have to make at aged 10 does seem a bit extreme. I think that maybe the age should be raised a little bit, maybe to 13 like Danni_Bella83 says. Although 3 years isn't that long, you change a lot between the ages of 10 and 13, and so may be more able to make a decision. At 10, all you can think off would be how scary the operation is, I don't think they realise the full impliations, whereas if their parents were able to make the decision, and simply said 'you're going to have an operation' then surely the child would do as their parents say, as they trust them? At 13, they would understand the process a lot more, I would have thought.
I've never been in this situtation so obviously I can't comment for sure on what I'd do, but if I was told at 10 I needed to make such a big decision I'm not sure I could, I mean I used to find it difficult in choosing what magazine to get when I was that age, so to be made to make such a hard must be so tough, on the child and thier family.
Anyway I think I've rambled enough
I've never been in this situtation so obviously I can't comment for sure on what I'd do, but if I was told at 10 I needed to make such a big decision I'm not sure I could, I mean I used to find it difficult in choosing what magazine to get when I was that age, so to be made to make such a hard must be so tough, on the child and thier family.
Anyway I think I've rambled enough
Children who have had illnesses for a long time are much more likely to give decisions about their treatment. I think its good that healthcare trusts are giving children who are 10+ a voice in their treatment. At the end of the day they are the ones who are living throughout the experience and they do have advocates to help talk the children and families through the decisions neccessary.
Mrs. Political
if someone said to me that you've got to decide whether or not you want to have a transplant when i was 10, i'd have been dead scared- personally i know that i couldn't deal with that.
I know I think I'd be the same!
Frost 105 I do see your point, children should have a say in their treatment but do you think they should have the FINAL say? Imagine in 15 years time you have a 10 year with CF and she's refusing point blank to have the operation, maybe cos she's scared or doesn't want a scar of something, and not matter what you say to her she won't change her mind. This means that the operation would not go ahead and you'd have to watch your child suffer and get more ill until they die, knowing that there *could* have been something that may have helped her? I really don't think! Especially knowing that if I had the final say, things *could* have been very different.
* gemchicken
I know I think I'd be the same!
Frost 105 I do see your point, children should have a say in their treatment but do you think they should have the FINAL say? Imagine in 15 years time you have a 10 year with CF and she's refusing point blank to have the operation, maybe cos she's scared or doesn't want a scar of something, and not matter what you say to her she won't change her mind. This means that the operation would not go ahead and you'd have to watch your child suffer and get more ill until they die, knowing that there *could* have been something that may have helped her? I really don't think! Especially knowing that if I had the final say, things *could* have been very different.
Frost 105 I do see your point, children should have a say in their treatment but do you think they should have the FINAL say? Imagine in 15 years time you have a 10 year with CF and she's refusing point blank to have the operation, maybe cos she's scared or doesn't want a scar of something, and not matter what you say to her she won't change her mind. This means that the operation would not go ahead and you'd have to watch your child suffer and get more ill until they die, knowing that there *could* have been something that may have helped her? I really don't think! Especially knowing that if I had the final say, things *could* have been very different.
Then you would take the case to court to over rule their decision if you felt necessary but then you would have to live with that decision. Every case is unique and witht he right support the child will make the right one for them.
I had a 10 year old in my brownie group with diabetes and she managed her disease better than I've seen my cousin with type 2 deal with hers at 19. She's lived with it all her life and she gets annoyed but she knows whats right for her even at 10.
It would be a terriable crime if the parents forced a kid to have it and they hadnt consented. The kid would become highly destressed, and surely at the age of 10 they are mentally able to decide if they want to take the risk. At age 10 i was making all kinds of descissions which school to go to, i know it may seem minor but the choices we make it part of growing up.
Reply 13
when i was ten i was told that i could have cancer,i didnt know what the hell was going on, i just wanted to know why i was being kept off school! turned out that my cysts were and still are benine. if i'd had to make a decsion then, i wouldnt of been able to. theres no way you can make an informed decsion at 10.
Hi everyone.
I don't know if any of you saw the TV programme "Will I still love my mum" last night, but it was about 3 CF girls (Kayley/Hannah/Nicky) facing the decision of whether or not to have a heart and lung transplant now that their own lungs are severely damaged due to the disease.
I'm just posting this sponsorship page if anyone is feeling generous and would be kind enough to donate an amount (big or small) to the CF Trust (Cystic Fibrosis Trust). Please don't be put off by the large donations - even a small amount will make a difference. My family/friends are doing a sponsored run in september (see page for details).
http://www.justgiving.com/thecfgirls
Even if you don't want to sponsor, please take the time to have a look at the page and read the info.
I will be extremely grateful for any donations!
Any money donated will go towards finding a cure for this disease and help people like Kayley/Hannah/Nicky in the future.
Thanks for your time.
Laura xxxx
I don't know if any of you saw the TV programme "Will I still love my mum" last night, but it was about 3 CF girls (Kayley/Hannah/Nicky) facing the decision of whether or not to have a heart and lung transplant now that their own lungs are severely damaged due to the disease.
I'm just posting this sponsorship page if anyone is feeling generous and would be kind enough to donate an amount (big or small) to the CF Trust (Cystic Fibrosis Trust). Please don't be put off by the large donations - even a small amount will make a difference. My family/friends are doing a sponsored run in september (see page for details).
http://www.justgiving.com/thecfgirls
Even if you don't want to sponsor, please take the time to have a look at the page and read the info.
I will be extremely grateful for any donations!
Any money donated will go towards finding a cure for this disease and help people like Kayley/Hannah/Nicky in the future.
Thanks for your time.
Laura xxxx
Reply 16
Very good idea. That program made me cry, no joke its one of the most horrible things ive ever seen.
Very good cause, i shall be donating.
Ad
Reply 17
Yes, I support and will start donating money to these.
Feel really sad for people with CF and other diseases.
Wish I can help in other ways.
Feel really sad for people with CF
and other diseases.Wish I can help in other ways.
adamu
Very good idea. That program made me cry, no joke its one of the most horrible things ive ever seen.
Very good cause, i shall be donating.
Ad
Very good idea. That program made me cry, no joke its one of the most horrible things ive ever seen.
Very good cause, i shall be donating.
Ad
Thank you.
I should have stated that I also have CF - however I am not yet at the point where I have to decide whether to go on the transplant list.
Laura
Reply 19
Laura_M
Thank you.
I should have stated that I also have CF - however I am not yet at the point where I have to decide whether to go on the transplant list.
Laura
I should have stated that I also have CF - however I am not yet at the point where I have to decide whether to go on the transplant list.
Laura
Im very sorry to hear that. I can appriciate what you must go through and i only hope that you make the right decision and it works out well for you.
Ad
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