Sarah Murnaghan has cystic fibrosis and needs new lungs to save her life.

[BellePrincessBelle]

Well, I don't think punishing people who need organs is a fair response to this, but oh, well.

As for losing a second child to CF, they will inevitably lose this child to CF. Unfortunately, even with a transplant, it's a question of when.

Your opinion. Organ donation is voluntary and well, I'm no longer volunteering. That's the way things go.

 

[roomthreeseventeen]

Your opinion. Organ donation is voluntary and well, I'm no longer volunteering. That's the way things go.

That's fine. I hope you will let your children make their own decision when they are old enough.

 

[eliza61]

So I haven't read all the replies and I'm not a medical expert nor do I know anyone who is awaiting a transplant. My concerns are general.

1) I have a adversion to people using the courts to simply "get their way". Now there are 7 other lawsuits. the remaining parents are now suing to get their kids placed on other list. translation: don't like the outcome, sue to get your way.

2) Why is this child more deserving than any other child? She's now a media darling. what happens with the brown skin kid who doesn't get the media attention or who's parents can afford to sue. I guess their kids are SOL.

3) I do wonder why Sarah's doctors are not campaigning as hard as her mother?

Basically I think this opens up simply way to many floodgates for more legislation and that's never a good thing. I too am no longer an organ donor for various reasons. this is one of them. Organs no longer are assigned randomly (or according to health) basically they are being assigned to who has more money, bigger backers and who screams the loudest.

 

[StitchesGr8Fan]

Will this cause me to change my donor status? No

Do I hope they save this little girl? Yes

Do I think the parents should have started this campaign for a regulation change a long time ago? Yes

 

[BellePrincessBelle]

That's fine. I hope you will let your children make their own decision when they are old enough.

Of course they can. Lets put it this way, how would you feel if you husband, wife or even 17 year old child HAD been next on this list under the "old" system & as of yesterday was bumped because someone else didn't like the way it worked?

 

[roomthreeseventeen]

Of course they can. Lets put it this way, how would you feel if you husband, wife or even 17 year old child HAD been next on this list under the "old" system & as of yesterday was bumped because someone else didn't like the way it worked?

It depends. If a court decided that the way the old system was working was wrong and unfair, I have no problem with changing it.

 

[BellePrincessBelle]

It depends. If a court decided that the way the old system was working was wrong and unfair, I have no problem with changing it.

So you would be ok with the courts saying that your 17 year old can die because the parents of a 10 yo had a bigger media presence and heck a 10 yo white girl is much cuter than a 17 african american.(not my feelings just obvious media bias)

 

[eliza61]

It depends. If a court decided that the way the old system was working was wrong and unfair, I have no problem with changing it.

Oh yeah, that's exactly who I want to be deciding medical protocol.

 

[roomthreeseventeen]

So you would be ok with the courts saying that your 17 year old can die because the parents of a 10 yo had a bigger media presence?

Courts do not rule on laws because of media presence.

 

[BellePrincessBelle]

Courts do not rule on laws because of media presence.

Obviously they just did!

 

[roomthreeseventeen]

Obviously they just did!

Sorry, I don't agree. I assume a judge knows better than I do.

 

[BellePrincessBelle]

Sorry, I don't agree. I assume a judge knows better than I do.

That's fine. Everybody is entitled to disagree. My opinion is a Judge is not a Doctor so I doubt they are more knowledable about medical procedures.

 

[roomthreeseventeen]

That's fine. Everybody is entitled to disagree. My opinion is a Judge is not a Doctor so I doubt they are more knowledable about medical procedures.

You don't know that the judge didn't hear from medical professionals before ruling.

 

[eliza61]

Courts do not rule on laws because of media presence.

Lol. my mother was a civil rights attorney and my bff is a pa state supreme court trial lawyer based inDevon Pa. I assure you courts rule all the time due to public pressure. Judges cut deals daily based on sometimes, public sentiment.

 

[BellePrincessBelle]

You don't know that the judge didn't hear from medical professionals before ruling.

What I do know is that the Dept. of health & Human services, who are much more knowlegable than I, said no. I would assume that they know more than the Judge as well.

 

[crashbb]

That's fine. Everybody is entitled to disagree. My opinion is a Judge is not a Doctor so I doubt they are more knowledable about medical procedures.

It feels (to me) that making an exception for this specific child was due to media pressure (especially since it was a reversal of an earlier decision and came after much media pressure).

Looking at changing the overall policy, is (again, to me), less likely to be purely due to the media.

 

[nhpooh]

I know you can't see the logic, but I can. That someone off the list is a father, mother, sister, brother, grandma, and or grandpa. The list exists as is because transplant teams have determined it is the best for EVERYONE. This junction has played on the heartstrings of people. These same parents could have also been lobbying while the child was waiting, but they did not. (this is from the information I have and if I am wrong I accept all the criticism I receive).

My father went through almost 1000 pages of paperwork to get on the transplant list. Getting an organ is not as simple as being on the top of the list. This judge has opened up the system to many lawsuits that will now take the program back many years. I FEEL FOR THE YOUNG GIRL. I really do. But this was not the way to do it.

I said in a post prior that this would cause some to question their organ donation. It is trying to put through a change to save one life even if the goal was to bring awareness. It was the wrong time to do it.

1,000 pages of paperwork to figure out which organ may or may not be a match. I can not stress enough how bad this is for the transplant program.

Many will disagree with me and that is just the way it is. But even I after my father received a donation will have to re-evaluate the system. If they are going to make exception it is not the program I believe in. I will not be able to support it either. But I am not going to make a hasty decision.

As I stated before I do believe this was a decision based on the fact that at this time nothing will change. Her odds really are not that much more than before. I said before the doctors and transplant team may now re-evaluate the program and the process for pre-teens. It also may stay the same.

It is suppose to be a program for the masses, not the person who gets the most media attention, the best insurance, the most money. Once this happens and if it happens it will not be something I can be a part of. I will have to figure out how to re-write my will and medical paperwork so that my organs will revert back to the system that saved my father. No one person is better/sicker than the other to put them on a list they did not originally belong on.

Flame away. I walked in shoes that went down this road. I have a clear conscience re: my decision. It is a personal choice and to be very honest a tough one.

I will again keep all the my thoughts and prayers with this family and the family that has been removed because of this decision.

I agree with you and I am one who lost a child with CF, she too was on the list and didn't make it. FYI: I also had a brother with CF and he didn't make it. We found out it is much easier to get a heart then a set of lungs.

Best of luck to this family but really this is what happens with CF.

 

[roomthreeseventeen]

Even if an exception was made for this particular child, it doesn’t save her. If you’re a CF child and you need a transplant so early in life, unfortunately, you are not going to live very long. I can’t fault these parents for wanting a few more years with their child. It sucks that they skirted the system, but grief is weird.

 

[CPT Tripss]

It feels (to me) that making an exception for this specific child was due to media pressure (especially since it was a reversal of an earlier decision and came after much media pressure).

Looking at changing the overall policy, is (again, to me), less likely to be purely due to the media.

Yep! If the media and this case kick started a reexamination of the policy, great. If it influences the outcome of the reexamination and the policy decision, not good.

 

[DizBelle]

Does a patients projected life expectancy after the lung transplant factor into their priority on the list?