Child denied life saving surgery because she has brain damaged

[Trench]

Brick Walls | wolfhirschhorn.org

Love That Max: Should kids with disabilities be denied transplants? Some doctors think so

some thing you can do- Just Juniors: A Life Worth Living? Apparently Not.

:cry::cry::cry:I would like to rip the head off that doctor :evil::evil::evil:

 

[Vincey]

Wow, I can sometimes see the disallowing of a transplant due to special reasoning but this is just down right rude.. Even if a family member donates one, they refuse to do such procedures? Just a bit screwed up. =\

 

[Trouble]

Ohh very touchy subject!!
Okay, I'm going to come from the other side of things. We only know part of this story.

The transplant process is a very big one, and it's not as simple as getting new organs, be it a new kidney, heart, or a set of lungs.
When the patient is told they will need a transplant, there is a fare bit of testing to go through - blood tests, 24hr urine tests, etc.
Then there is the mental testing to see if you will be mentally stable to go on the list. As I said before, it's not just magically getting new organs and all is okay - it's far from it! You need to be mentally prepared for the work that goes on before, during the healing process, and after txplant.
Before hand, you have to face the reality that you could die while waiting on the list. Now, for a 3yr old, that wouldn't really come into play, as they wouldn't know much difference (sorry if that sounded harsh).
During the lead up, there will be more testing, there will be blood tests every month, and she will gradually get sicker, so that means lots of medical treatment, though I doubt that would matter since she would be having treatment with her condition anyway.
After transplant on the other hand is where it will get difficult. Even if one of her family members do match perfectly and can give her a kidney, the amount of anti-rejection medication and physiotherapy she will need during healing is heaps!!
I have been told, for a lung transplant, I can expect to be taking no less than 30 tablets each day. 30!! Now, it's hard enough to get kids to eat their vegetables, let alone take something that they don't realise is going to keep them alive!! Trust me, my parents know that first hand!
To be able to get someone who is 'mentally retarded' to understand that they need to take that medication so they can live a long happy life would only be part of the challenge.
No one can guarentee that these organs will take to her body & that she will live a happy life. She could end up in more pain from the transplant, she could die in 6 months time anyway because of rejection. Transplant is no magical cure.
Even if she ends up on the txplant list because none of her family members match her blood/tissue type, with her condition, no doubt she wont be near the top of the waiting list. I can see where the parents are coming from, but I can see where the doctors are coming from more. If they can save another person's life, who they know will look after themselves & not damage/ruin this gift of life, I know which patient I would be choosing.

I can say all this because I am waiting for new organs too.
For the little girls sake, I would rather her live this happy little life she has at the moment, then have to go through all the pain in the world, not understanding what is going on, only just to pass away because the txplant did not work...

 

[Darlyn]

Trench, as sad as it is as Trouble says it is very complicated and ultimately it is a medical decision.
Not one taken lightly. Decisions such as these are made every day by the medical fraternity, not a nice job
but they are the best ones to make these decisions.

 

[Recharge]

sorry Trenc, I can't agree with you there, there are many factors which should preclude a transplant.
not every life is "worth" prolonging or saving, especially when the time could be put to "better: use in saving another child or adult.
it's a very heavy and touchy subject, but, we have limited resources and time when it comes to surgery like this, there are far better candidates in the line, and choices have to be made.

 

[Fuscus]

I pity the doctors who make these decisions when an organ comes up and there are 50 possible recipients.
However, I've noticed a number of APS members generously help the supply side of things by riding motorcycles.

 

[littlemay]

I understand that it is a very touchy situation involving difficult moral decisions, however i did not think that doctors were allowed to deny patients access to transplant waiting lists unless the chances of success/survival were not worth the surgery...? I did not think that the perceived 'worth' of the patients life was supposed to come into it?

 

[Cooly505]

Who pays them!?!?!

 

[Chris1]

my god Trouble, is that 30 pills a day for ever, or just while the lungs settle in?

this story is pretty terrible, the parents/family are offering to supply the kidney for craps sake.....its not like theyre taking an organ off a potentially better candidate,....

 

[daniel1234]

I think Trouble summed that up perfectly.
Much of my nursing life has been involved with those who struggle with medication/treatment compliance.
To place a value on someones life based on their ability is definately unethical and wrong but to relistically consider their capacity to maintain a treatment regime I think is within reason. The probability is that it would be clear before the transplant occured, as it should.

Chris1 I know you did not ask me, but yes for ever.
I hope you get new lungs soon Trouble, it has been long enough.

 

[Mayo]

Have to say I'm going to side with the doctors as well. Transplants are hard enough on the human body, without other complications.

 

[SYNeR]

Very touchy subject, but in these cases, I take the side of utilitarianism.

 

[Trouble]

Wow, I was expecting everyone to jump on me for being 'heartless' :?

I understand that it is a very touchy situation involving difficult moral decisions, however i did not think that doctors were allowed to deny patients access to transplant waiting lists unless the chances of success/survival were not worth the surgery...? I did not think that the perceived 'worth' of the patients life was supposed to come into it?

The doctors in reality can deny patients a transplant. I was very close to being told if I didn't comply with treatments, I would not be receiving the 'gift of life' because they could not guarentee that I could look after myself properly after txplant.
I honestly think that's all this story comes down to. Now, we're only reading what the mother has put up, and have not heard from the doctor directly. In tough times like this, people can be mis-quoted, and I have a feeling this is what has happened here in regards to what the doctor has said. I don't think the 'worth' of the patient is coming in to play here at all, the doctor/transplant team are probably thinking long-term, like they are suppose to, and questioning whether this child would be the best candidate, even if she is donated a kidney from her family member. Again, most of the time those kidneys don't match 100% so they still can't use them.

*****ed up docters. Who pays them!?!?!

Not ****ed up at all. Try having to make that decision day in day out. In a way, it's like playing God. Not everyone can receive a transplant, because there are simply not enough donors. Trying to find someone who isn't going to take that gift for granted, as well, that's another challenge. I take my hat off to these doctors, well any doctor, that has to make life saving/ending decisions like this.

my god Trouble, is that 30 pills a day for ever, or just while the lungs settle in?

this story is pretty terrible, the parents/family are offering to supply the kidney for craps sake.....its not like theyre taking an organ off a potentially better candidate,....

Chris - as Daniel said, yes most of the time it will be for the rest of our lives. Most of the tablets are anti-rejection pills and steroids. They can slowly decrease the dosage over the years, but it's always a juggling act. One of my friends who is 3yrs post transplant is currently on 10 pills of a morning, and 12 at night. But what's a few tablets when you have a new chance at life

Thank you, Daniel

 

[Mayo]

Wow, I was expecting everyone to jump on me for being 'heartless' :?

Not everyone can receive a transplant, because there are simply not enough donors. Trying to find someone who isn't going to take that gift for granted, as well, that's another challenge. I take my hat off to these doctors, well any doctor, that has to make life saving/ending decisions like this.


Thank you, Daniel

Add to that there are not enough doctors to do the procedure's

 

[waruikazi]

I just went to register for organ donation, rang my folks to check they were cool with it, went to the website... and just couldn't bring myself to do it.

Why is it so hard? I'm not gonna use them and i really support people doing it... But i just can't bring myself to sign up....

 

[Kitah]

Its not a simple decision, to say who can and cannot receive an organ transplant has been said. So many things come into play. As has been discussed above, the practicality post-surgery plays an incredibly huge part in this. All I can say is I do not envy the doctors who have to make these decisions, and actually feel sorry for them. especially when the media gets hold of it like this, can you imagine how crap the doctors feel? I know what I'd feel like if that was me... Theres always two sides to the story.

Waruikazi, I know what you mean about registering for organ donation. I think my stomach flipped when I did register. But the way I think of it is that I will no longer need my organs, and why go to waste if I could save someones life like Trouble who has been waiting for lungs for so long, a mother, child, husband, etc. You give the best gift of all- the gift of life.

 

[Recharge]

I understand that it is a very touchy situation involving difficult moral decisions, however i did not think that doctors were allowed to deny patients access to transplant waiting lists unless the chances of success/survival were not worth the surgery...? I did not think that the perceived 'worth' of the patients life was supposed to come into it?

doctors can't, but hospital administrators can and do.

my god Trouble, is that 30 pills a day for ever, or just while the lungs settle in?

this story is pretty terrible, the parents/family are offering to supply the kidney for craps sake.....its not like they're taking an organ off a potentially better candidate,....

it would still take valuable surgeon (and team) time, which as I already posted, can be better put to the hundreds of others also in line, also at deaths door, and will have a much better level of life afterwards, the child is brain damaged, other people on the waiting list are otherwise healthy, would you tell another parent their otherwise fully functioning child will have to die to save a child who will never grow into a functioning adult? these are the decisions the admins have to make to allocate who gets what and when.

to try and call doctors names for it.. I don't even, use some darn logic, you can't save every one, and I don't care who you are, a brain damaged child is not the same "worth" as a non brain damaged one in the end (in the steaks of who is worh saving first, who comes first on the list of transplants)
(except when you're the parent, but that's true of every parent when it comes to their children)

the simple fact is, there are only so many places on the list, only so much time doctors can work, only so much time patients on these lists have, and it's a constant race against time, sacrifices have to be made.
unless you're stinking rich, then you can move places.

 

[PilbaraPythons]

If brain function is the benchmark for organ eligibility then about half of our APS members better stay healthy I reckon.

 

[Defective]

the ethics of organ transplant also come into play, in a special needs transplant person they look at not only their physical state but the support systems, the psychological implications that can occur and if such a person does/will have the ability to be resilient enough in the future to adhere to the regime of meds and doctor appointments.

transplants in kids can also make them not like doctors and hospitals making it hard on the parents.

I have been told, for a lung transplant, I can expect to be taking no less than 30 tablets each day. 30!!

i know how hard it is to take a stupid amount of pills to stay alive.....15 anti- epileptic drugs go down my throat day and night so i don't have seizures.... 30 a day......its incredible and im only 24 so i understand.

 

[Snakewoman]

I pity the doctors who make these decisions when an organ comes up and there are 50 possible recipients.
However, I've noticed a number of APS members generously help the supply side of things by riding motorcycles.

I know at least 7 people who have been riding motorcycles for between 20-40 years. Don't count on us being your organ donors, it doesn't always end badly... in fact horse riding is at least 10 times more dangerous than riding a motorcycle, so perhaps that's where your best bet is...

Study finds horseback riding more dangerous than motorbikes, skiing, and football | Faculty of Medicine | University of Calgary

[url]http://www.parliament.vic.gov.au/images/stories/committees/rsc/motorcycle_safety/Submissions/44-67/60_UlyssesClub_13092011.pdf
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