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

[CPT Tripss]

This is a can of worms! What really troubles me about this case is that there is now no allocation policy. Decisions are now being made in courtrooms on a case by case basis. That's a really bad practice.

Will the lung transplant team now evaluate all the children according to the adult protocols, using the LAS? Where will all the kids end up in rank order? What about the adults on the list who get displaced by kids? Will they counter sue?

 

[robinb]

The chances of success are still low. I'd hate to see a 15 yr. with a better chance of survival die because he/she got bumped.

I admit I know nothing about how people are ranked on the transplant list and don't know where potential outcome weighs in on how far up a person is on the list. I wouldn't be surprised that someone who is sicker is chosen over someone else who is stronger and may do better with the surgery and recovery.

 

[Hoodie]

A federal judge just ruled she could be put on the adult list. It's very scary that media exposure, political influence and a judge can overrule stipulations set in place by medical doctors who have experience in transplants and understand the chances and complications of the surgery.

It's temporary. There will be a hearing in 10 days. If donor lungs happen to become available in that time, she will be eligible to receive them. If she does not, there is a chance that she will then be removed from the adult donor list.

Two things of note: Sarah's parents did not want an exemption for their daughter. They wanted all children to be allowed on the list, if eligible. There were 10 pediatric lung transplants nationwide last year. There were 1700 adult lung transplants in the same time.

Second, many transplant lists have already been combined. Kidney and liver, for example, already have combined lists with people being awarded more points based on age. That opens up the entire donor pool to everyone waiting, not just people of certain age. Apparently the lung protocol has not been updated yet. Basically, her parents are pushing to end the discrimination based solely on age. I've seen many 10 year olds who were the size of a 12 year old, but under the current guidelines, they would be excluded. I also have a friend who at 15 was about the size and weight of a "normal" 11 year old. She probably would have been too tiny for adult lungs. It's time to elinimate age discrimination and base the eligibility and ranking on factors that actually would determine success.

 

[Tinker'n'Fun]

After being through the process, 10 days will most likely not make a difference for this child. I also think it is a "dangerous" move to make but I also have a feeling that they knew the chances were so remote that they chose to give the exception to stop the media push.

In the end the regulations will be reviewed. Doctors and Transplant teams will make the best educated decision re: the life expectancy of a child receiving an adult organ. From the information that I read during our journey I do not see any changes being made. They may change it more to a height/weight growth base for pre-teens but in my opinion that is all that will come out of this ruling.

Transplant is hard on everyone. The life after transplant is and can be the same horrible road you were already on. The medicines make you feel horrible. My father passed from complications of all the medicines required to take to stop rejection and not from the transplant. I can not stress it enough that knowledge is your best friend.

As for selling organs to a specific person and or wishing I strongly believe it should be a very limited practice as in family or close family. The system is set up so that the most needing are just as important as the person with great insurance or the ability to pay.

May everyone who is effected by this decision find peace in their hearts and lives. It is just so complicated.

 

[CPT Tripss]

It's temporary. There will be a hearing in 10 days. If donor lungs happen to become available in that time, she will be eligible to receive them. If she does not, there is a chance that she will then be removed from the adult donor list.

Two things of note: Sarah's parents did not want an exemption for their daughter. They wanted all children to be allowed on the list, if eligible. There were 10 pediatric lung transplants nationwide last year. There were 1700 adult lung transplants in the same time.

Second, many transplant lists have already been combined. Kidney and liver, for example, already have combined lists with people being awarded more points based on age. That opens up the entire donor pool to everyone waiting, not just people of certain age. Apparently the lung protocol has not been updated yet. Basically, her parents are pushing to end the discrimination based solely on age. I've seen many 10 year olds who were the size of a 12 year old, but under the current guidelines, they would be excluded. I also have a friend who at 15 was about the size and weight of a "normal" 11 year old. She probably would have been too tiny for adult lungs. It's time to elinimate age discrimination and base the eligibility and ranking on factors that actually would determine success.

Lung size of the donor and chest size of the recipient are a consideration in the match process. It's unlikely that this girl would get lungs from a large, healthy male absent another judge making an individual decision.

 

[DizBelle]

A federal judge just ruled she could be put on the adult list. It's very scary that media exposure, political influence and a judge can overrule stipulations set in place by medical doctors who have experience in transplants and understand the chances and complications of the surgery.

I'm not sure I understand how the courts can intervene in something that is not a matter of law.....

 

[BellePrincessBelle]

The outcome of this case has prompted both my husband & I to rescind our status as organ donors. I want protocol to be followed, not he who has the biggest mouth or the fastest way to a judge geting them. A second person has already filed a suit. The floodgates have been opened.

 

[a1tinkfans]

Its sad that there are so many waiting for organs on the list/s...

Its heartbreaking to hear the stories........a doctor said its one person added on, means someone else is off,,,,

heartbreaking..............
I pray they ALL get the organs they so desperately need.....and soon....
and while Im at it


PLEASE donate blood, its so easy and so needed as well.............................

 

[AverageDiser]

The outcome of this case has prompted both my husband & I to rescind our status as organ donors. I want protocol to be followed, not he who has the biggest mouth or the fastest way to a judge getting them. A second person has already filed a suit. The floodgates have been opened.

With all due respect, the floodgates needed to be opened. The protocols in place do not reflect the advancements in lung transplant medicine. Children with the physical maturity to handle a set of adult lungs should be given an equal shot at getting them.

*There are currently approximately 35 children under 12 on the lung transplant list. If you subtract the children who could not use adult lungs (let's say anyone under 8, and that's generous), there are approx 15. Last year there approximately 12 pediatric transplants in that age bracket. The average waiting time for a pediatric lung transplant (roughly 8 yrs old and up)was around 1621 days. That's almost four and a half YEARS.

*There approximately 1,627 adults on the list. Last year there were 1,734 adult transplants done. The average waiting time was 795 days. That's approximately two years.

I think those numbers illustrate the disparity between child and adult organ donations. For many reasons, there just aren't enough organs out there for kids, and it's a shame. If a transplant team deems that a child's body can handle adult organs (of any kind) UNOS should allow it. Hopefully these cases will bring that to light.

 

[okeydokey]

Another family filed suit to try to get their child the same allowance. I wonder how many more there will be.

 

[TLSnell1981]

Yes, they can. It's more difficult but can be done.

This is a situation where the rules and regulations haven't caught up with medical advances. When the rules were created, size was an issue. That's why the cut off was 12 - most kids over 12 could tolerate adult sized lungs. That has changed though and now they can transplant larger lungs into smaller bodies.

The issue isn't "jumping the line." She's at the top of the pediatric list. If she was 12 instead of 10, she'd be at the top of the adult list. Her doctors have said they could use adult lungs...if she was eligible via the transplant rules. It's strictly bureaucracy taht keeps her from getting them.

They aren't looking for her to situation to be a one time only bending of the rules, they are using her situation to show an example of the potential need to change the guidelines for everyone. Obviously they are looking for a swift change so Sarah can benefit from it.

They aren't looking to circumvent the system, but change it. They also aren't asking to be moved up the list because she is aready at the top of the children's list and would be at the top of the adult's list if she were allowed to receive an adults lungs.

With all due respect, the floodgates needed to be opened. The protocols in place do not reflect the advancements in lung transplant medicine. Children with the physical maturity to handle a set of adult lungs should be given an equal shot at getting them.

*There are currently approximately 35 children under 12 on the lung transplant list. If you subtract the children who could not use adult lungs (let's say anyone under 8, and that's generous), there are approx 15. Last year there approximately 12 pediatric transplants in that age bracket. The average waiting time for a pediatric lung transplant (roughly 8 yrs old and up)was around 1621 days. That's almost four and a half YEARS.

*There approximately 1,627 adults on the list. Last year there were 1,734 adult transplants done. The average waiting time was 795 days. That's approximately two years.

I think those numbers illustrate the disparity between child and adult organ donations. For many reasons, there just aren't enough organs out there for kids, and it's a shame. If a transplant team deems that a child's body can handle adult organs (of any kind) UNOS should allow it. Hopefully these cases will bring that to light.

Another family filed suit to try to get their child the same allowance. I wonder how many more there will be.

Hopefully, EVERY child will have the option, if their doctor deems the transplant possible.

 

[CPT Tripss]

The outcome of this case has prompted both my husband & I to rescind our status as organ donors. I want protocol to be followed, not he who has the biggest mouth or the fastest way to a judge geting them. A second person has already filed a suit. The floodgates have been opened.

It takes me back to the mid-90s, took the same action you did, after the preferential treatment given to Gov. Casey and then Mickey Mantle.

 

[KPeveler]

The outcome of this case has prompted both my husband & I to rescind our status as organ donors. I want protocol to be followed, not he who has the biggest mouth or the fastest way to a judge geting them. A second person has already filed a suit. The floodgates have been opened.

How will you doing this make a difference? What happened was a glaring error in the protocol was opened. Now it can be rewritten so that the sickest person can get the right lungs. Or do you think they realized a 10 year old was about to die, and could potentially be saved? And that second family that petitioned? They already lost one child to CF. Would you prefer that they suffer the death of a second child so your precious protocol is observed? The people who are petitioning for an exception until the protocol can be rewritten are going to be screened, so it is the sickest person first, as it should be.

So because of this, you will not be organ donors? You do realize this was about lung donation only? So the 2 people who would be saved by your kidney, the children who may gain sight with your corneas, the 3 different people who would be saved by your liver? Those people can just die, so that you can make a statement that no one hears.

Wow. I don't think I can even see your logic, much less agree with it.

ETA: I was an organ donor, until we discovered that I have a rare genetic disorder that makes my organ bad for me, much less for transplant. But my wife, sister, and parents are all organ donors, and I am proud of them.

 

[KPeveler]

With all due respect, the floodgates needed to be opened. The protocols in place do not reflect the advancements in lung transplant medicine. Children with the physical maturity to handle a set of adult lungs should be given an equal shot at getting them.

*There are currently approximately 35 children under 12 on the lung transplant list. If you subtract the children who could not use adult lungs (let's say anyone under 8, and that's generous), there are approx 15. Last year there approximately 12 pediatric transplants in that age bracket. The average waiting time for a pediatric lung transplant (roughly 8 yrs old and up)was around 1621 days. That's almost four and a half YEARS.

*There approximately 1,627 adults on the list. Last year there were 1,734 adult transplants done. The average waiting time was 795 days. That's approximately two years.

I think those numbers illustrate the disparity between child and adult organ donations. For many reasons, there just aren't enough organs out there for kids, and it's a shame. If a transplant team deems that a child's body can handle adult organs (of any kind) UNOS should allow it. Hopefully these cases will bring that to light.

Thank you! Numbers, logic, and reasoning can make this very clear.

And this little girl was already at the top of the list. This is very very different than a Governor or a baseball star getting preferential treatment. She is 10 years old. All she wants is to live.

 

[KPeveler]

I'm not sure I understand how the courts can intervene in something that is not a matter of law.....

Actually, health and safety of children is a legal matter.

And the protocol was written by a segment of the Federal government (a branch somewhere under Health and Human Services, which is a Cabinet position). So the government (a part of it anyway) wrote the law, so the only way to change anything in time to save her life (which is currently measured in days or weeks) is to go to a judge.

 

[Tinker'n'Fun]

How will you doing this make a difference? What happened was a glaring error in the protocol was opened. Now it can be rewritten so that the sickest person can get the right lungs. Or do you think they realized a 10 year old was about to die, and could potentially be saved? And that second family that petitioned? They already lost one child to CF. Would you prefer that they suffer the death of a second child so your precious protocol is observed? The people who are petitioning for an exception until the protocol can be rewritten are going to be screened, so it is the sickest person first, as it should be.

So because of this, you will not be organ donors? You do realize this was about lung donation only? So the 2 people who would be saved by your kidney, the children who may gain sight with your corneas, the 3 different people who would be saved by your liver? Those people can just die, so that you can make a statement that no one hears.

Wow. I don't think I can even see your logic, much less agree with it.

ETA: I was an organ donor, until we discovered that I have a rare genetic disorder that makes my organ bad for me, much less for transplant. But my wife, sister, and parents are all organ donors, and I am proud of them.

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.

 

[Tozzie]

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 totally agree with you!

 

[BellePrincessBelle]

How will you doing this make a difference? What happened was a glaring error in the protocol was opened. Now it can be rewritten so that the sickest person can get the right lungs. Or do you think they realized a 10 year old was about to die, and could potentially be saved? And that second family that petitioned? They already lost one child to CF. Would you prefer that they suffer the death of a second child so your precious protocol is observed? The people who are petitioning for an exception until the protocol can be rewritten are going to be screened, so it is the sickest person first, as it should be.

So because of this, you will not be organ donors? You do realize this was about lung donation only? So the 2 people who would be saved by your kidney, the children who may gain sight with your corneas, the 3 different people who would be saved by your liver? Those people can just die, so that you can make a statement that no one hears.

Wow. I don't think I can even see your logic, much less agree with it.

ETA: I was an organ donor, until we discovered that I have a rare genetic disorder that makes my organ bad for me, much less for transplant. But my wife, sister, and parents are all organ donors, and I am proud of them.

In the grand scheme, it won't make any difference except to me. Otherwise, it means 8 less potential donors since my dh & I are the decision makers for minor children.

 

[roomthreeseventeen]

In the grand scheme, it won't make any difference except to me. Otherwise, it means 8 less potential donors since my dh & I are the decision makers for minor children.

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.

 

[BellePrincessBelle]

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.

Very well stated. I can not support a system that will reward he with the loudest voice, rather than greatest need.