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

[roomthreeseventeen]

I was just pointing out that your assertion that people with CF have normal lifespan expectancy was blatantly not true.

 

[skater]

Nothing against Sara, but someone else probably will die because her parents did what they did. I don't think that's right. Who are they to say their child's life is more important than that of an adult waiting for lungs? That said, I hope the child has a good life.

I am not an expert on this issue at all, so you may be able to blow holes in this opinion, but here's what I think. The registry should be based on need - If Sara's need was greater (closer to death without new lungs), then she should be higher on the list than the adult. So, someone else won't necessarily die - they may have a little more time than she did. Of course the next person in light might die if there's another donor, but how else should we do it if its not based on need?

You can feel free to correct me if I'm wrong - this is an issue I have not studied very deeply.

 

[nhpooh]

Data from the CF Foundation Patient Registry, a tool that tracks health statistics from patients treated at CF Foundation-accredited care centers, shows that more than 45 percent of all people with CF in this country are 18 years or older. Also, the Foundation calculates the median predicted age of survival for people with CF. This number is based on a statistical method of using life table analyses developed by insurance companies to calculate trends in survival.

In 2009, the median predicted age of survival was in the mid-30s. The median predicted age of survival is the age by which half of the current CF Patient Registry population would be expected to survive, given the ages of the patients in the registry and the distribution of deaths in 2009.

You are so right! Back in the 60's when my brother was born the average age was early teens, and he did live to reach 14yrs. When my DD was born in the mid 80's it was mid to late 20's. Well she reached the age of 15y, was on the transplant list just didn't make it.

I too am happy for Sarah and her family and hope she will live a better life now. Still it's a hard and long road she has.

 

[sacall]

I was just pointing out that your assertion that people with CF have normal lifespan expectancy was blatantly not true.

And you know my daughter will not have a normal lifespan because.... just to let you in on a secret, there are over 1500 different mutations of the CF gene. My daughter wasn't even diagnosed with CF until she was 11. She happens to have a very mild form of CF. So according to her doctors at the accredited CF center that she is seen every three months, her doctor feels that she will have a normal lifespan if she continues with her current treatments.

Stacy

 

[roomthreeseventeen]

And you know my daughter will not have a normal lifespan because.... just to let you in on a secret, there are over 1500 different mutations of the CF gene. My daughter wasn't even diagnosed with CF until she was 11. She happens to have a very mild form of CF. So according to her doctors at the accredited CF center that she is seen every three months, her doctor feels that she will have a normal lifespan if she continues with her current treatments.

Stacy

Sorry, I wasn't talking specifically about your child

 

[castleview]

Not sure that this question has been asked yet, and I certainly don't mean to be nosy or rude. But CF has made HUGE strides over the past 20 years with the biggest stride being the detectable gene that can be done during and before pregnancy. I was screened for that gene. Were Sarah's parents?

 

[roomthreeseventeen]

Not sure that this question has been asked yet, and I certainly don't mean to be nosy or rude. But CF has made HUGE strides over the past 20 years with the biggest stride being the detectable gene that can be done during and before pregnancy. I was screened for that gene. Were Sarah's parents?

I am pretty sure that nobody is going to ask this. Even if they had screened their genes, there is no law that says they would have been forced to abort the child.

 

[nhpooh]

And you know my daughter will not have a normal lifespan because.... just to let you in on a secret, there are over 1500 different mutations of the CF gene. My daughter wasn't even diagnosed with CF until she was 11. She happens to have a very mild form of CF. So according to her doctors at the accredited CF center that she is seen every three months, her doctor feels that she will have a normal lifespan if she continues with her current treatments.

Stacy

I am so glad that your daughter is doing great! I think the later in life that your diagnosed with CF the better you do. My DD was diagnosed at birth, and my brother when he was about 6-9months old.

 

[Mickey'snewestfan]

I am not an expert on this issue at all, so you may be able to blow holes in this opinion, but here's what I think. The registry should be based on need - If Sara's need was greater (closer to death without new lungs), then she should be higher on the list than the adult. So, someone else won't necessarily die - they may have a little more time than she did. Of course the next person in light might die if there's another donor, but how else should we do it if its not based on need?

You can feel free to correct me if I'm wrong - this is an issue I have not studied very deeply.

The sad reality is that many people die on the lung transplant list every year. One estimate I saw is about 250. Apparently lungs are particularly hard to get, because so many things make them unusable.

With someone gets sick and jumps to the top of the waiting list, whether they jump because of a court case or jump because they have a particularly quick disease progression, other people will wait longer, and it's likely that at some point in the chain someone will die.

Think of it this way: Imagine the list for lungs goes:

John
Paul
George
Ringo

Now, Elvis jumps to the top. When the next set of lungs, the lungs that would have gone to John become available, Elvis gets them. John now has to wait a little longer, maybe a month. Fortunately he hangs on and at the end of that month another set of lungs becomes available. Lungs that otherwise would have gone to Paul who now has to wait for the lungs that would have gone to George. And maybe George or Ringo ends up dying because of those extra months. Of course that's an oversimplification, but that's the idea.

I can't blame these parents a bit for fighting, I know I'd do anything to save my child in the same situation. But, I also don't think that a media circus is the way to make these heartbreaking decisions.

 

[mom2rtk]

Not sure that this question has been asked yet, and I certainly don't mean to be nosy or rude. But CF has made HUGE strides over the past 20 years with the biggest stride being the detectable gene that can be done during and before pregnancy. I was screened for that gene. Were Sarah's parents?

Wow. I fail to see how that is pertinent to this at ALL.

 

[pigletgirl]

Wow. I fail to see how that is pertinent to this at ALL.

They're obviously both carriers.

 

[roomthreeseventeen]

They're obviously both carriers.

What's your point? That they should have been forced to abort the child, or not have any children?

 

[pigletgirl]

What's your point? That they should have been forced to abort the child, or not have any children?

WHAT????? Where did this come from? CF screening is part of the 12th week of pregnancy. If a mother tests positive, the partner can also be tested if he so desires.

I am a carrier. DH is not. If he was we would definitely have kept our daughter regardless of outcome.

But for some couples, maybe that isn't a road they would go down.

And this goes for all genetic diseases, sickle cell, Tay Sachs, etc. be informed, and do what is best for your family.

 

[mom2rtk]

They're obviously both carriers.

And...?

I'm not following and I'm curious to see where you were headed.

 

[pigletgirl]

And...?

I'm not following and I'm curious to see where you were headed.

See above

 

[crashbb]

WHAT????? Where did this come from? CF screening is part of the 12th week of pregnancy. If a mother tests positive, the partner can also be tested if he so desires.

I am a carrier. DH is not. If he was we would definitely have kept our daughter regardless of outcome.

But for some couples, maybe that isn't a road they would go down.

And this goes for all genetic diseases, sickle cell, Tay Sachs, etc. be informed, and do what is best for your family.

It comes from the fact that, unless you are suggesting that a CF patient getting lungs should depend on whether or not his/her parents were screened before his/her birth, then the question and comment is entirely irrelevant.

Since you answered "They're obviously both carriers." to a question asking about the pertinance of questioning what the parent's knew before Sarah's birth, it does seem like you are saying the their carrier state (or their knowledge thereof) is what makes the question relevant.

Since it doesn't, why make the comment?

 

[mom2rtk]

See above

I'm still confused.

Do you think they should have known better than to have a child? Or that doing so knowingly should disqualify that child from getting the transplant? Or that if they were caught unaware that she should have ended the pregnancy?

Maybe I'm totally missing your point.

 

[skater]

The sad reality is that many people die on the lung transplant list every year. One estimate I saw is about 250. Apparently lungs are particularly hard to get, because so many things make them unusable.

With someone gets sick and jumps to the top of the waiting list, whether they jump because of a court case or jump because they have a particularly quick disease progression, other people will wait longer, and it's likely that at some point in the chain someone will die.

Think of it this way: Imagine the list for lungs goes:

John
Paul
George
Ringo

Now, Elvis jumps to the top. When the next set of lungs, the lungs that would have gone to John become available, Elvis gets them. John now has to wait a little longer, maybe a month. Fortunately he hangs on and at the end of that month another set of lungs becomes available. Lungs that otherwise would have gone to Paul who now has to wait for the lungs that would have gone to George. And maybe George or Ringo ends up dying because of those extra months. Of course that's an oversimplification, but that's the idea.

I can't blame these parents a bit for fighting, I know I'd do anything to save my child in the same situation. But, I also don't think that a media circus is the way to make these heartbreaking decisions.

Good explanation. Unfortunately, I think they had no choice. The media circus probably helped them get a judge to overturn the decision.

 

[Tinker'n'Fun]

I'm still confused.

Do you think they should have known better than to have a child? Or that doing so knowingly should disqualify that child from getting the transplant? Or that if they were caught unaware that she should have ended the pregnancy?

Maybe I'm totally missing your point.

I don't think she meant either. But it brings up questions that other people are just thinking. The parents are going to be questioned no matter what they did or didn't do. It came with new technology and honestly it is a huge bundle of horrible situations and feelings for everyone. Each side has their good points and bad ones.

I don't believe anyone on this thread has been wrong in their feelings and or questions.

I feel for everyone involved. Remember when she received her lungs someone else did not and that person may or may have been given the opportunity to fight the courts decision.

This thread makes my stomach turn - seriously. After living through the process and a transplant it is just very hard on me emotionally. I still come and read because I really would like to help people who have questions and or want to be educated re: the process.

 

[castleview]

I am pretty sure that nobody is going to ask this. Even if they had screened their genes, there is no law that says they would have been forced to abort the child.

Wow. I fail to see how that is pertinent to this at ALL.

What's your point? That they should have been forced to abort the child, or not have any children?

Talk about jumping to conclusions, people.

You can screen for this BEFORE you even consider getting pregnant. I did screen because I've seen this disease. I was honestly wondering if her parents had done that. CF is awful and I wouldn't wish it on anyone.