10 year old girl denied transplant lung..to young by two yrs

[deziloooooo]

www.courant.com/videogallery/76175096/Girl-10-Denied-Lung-Transplant

Doctors say prognoses would be very good...youngster has three to five weeks to live..estimated...she would go right up to the front of the line for a lung if compatible because of that..yet the rule is 12 years or older to be on the list...I understand there are rules in life..been living by them all my life..but then again..IMHO of course..there is a time to take the stick out and bend and use some common sense...

What is getting to me here is the fact taht the medical people are saying the chance of full success is very, very good and high..granted as in all medical operations there are some risks..but if the medical people are all for it I believe they should be listened to more closely and the non medical people listened to less...IMHO of course..

[thyme4change]

Are we throwing out perfectly good lungs?  Or by moving her up on the transplant list, are we just sentencing some other person, who happens to be over 12 years old, to die?  

[Wisconsin Beth]

Isn't there an issue with chest cavity space for the 10 year old?  And an adult's lungs wouldn't fit? 

[Angel!]

Jun 5, 2013 12:53:40 GMT -5 thyme4change said:

Are we throwing out perfectly good lungs?  Or by moving her up on the transplant list, are we just sentencing some other person, who happens to be over 12 years old, to die?  

The rules are there for a reason.  There is always going to be a lot of people that don't get a lung each time someone does get a lung.  They create these rules to try to keep order in a system that literally determines life & death. 

Don't get me wrong, it makes me very sad.  But, they aren't throwing out perfectly good organs, they are saving someone else's life.  There are 40 people in that state on the adult list also waiting for lungs.  Her getting on the list despite the rules may mean someone else dies.

[mmhmm]

There are several factors in action here.  There are 40 adults and 3 other children waiting for lungs in Pennsylvania right now.  Nationally, there are 1700 adults and 30 children <10 awaiting lungs.  How is it to be decided who gets an available lung?  Squeaky wheel gets the oil?  This child has cystic fibrosis, a chronic, inherited lung condition.  A lung transplant won't cure that condition.  How many of those awaiting lungs are otherwise healthy, with no chronic lung condition that would, quite possibly, compromise the new lung?  It's a broad picture, not a narrow one.

I wish nobody ever had to get cystic fibrosis.  I wish nobody ever needed a lung transplant.  Unfortunately, my wishes don't reflect reality.  In this case, reality is a harsh taskmaster.  I'm empathetic with the child and her family, but my empathy also extends to all the others who are waiting, hopefully, for organ transplants.

[thyme4change]

Squeaky wheel gets the oil?

That is a big problem for me.  I don't want every person with a condition to think the best way to "beat out" someone else is to get your picture plastered all over CNN on a slow news day.  I'm very sorry that tragedy happens, but it is happening to many people right now.  If CNN wants to dedicate an hour every week to show all the people that will die without a transplant, and what makes them special - they can do that, but please, please, please, don't make it seem like a win if we save this girl, and kill another person.  Just because that other person doesn't have a media presence doesn't make them any less valuable.

[The Captain]

If I understand correctly transplants are usually grouped into two categories, children and adults, to ensure a better organ size match.

Since there has to be a cutoff they used 12.  She is 10 but COULD accept adults lungs.  There are more adult organs available than childrens so they want to take her off the childrens list and put her on the adult list.  This is coupled with the fact that they truly don't know what survival stats are for kids because so few of these types of transplants are done on children.

So yes, they want to push her to the front of the adult line (which has over 1600 people on it) and let someone else die instead.

www.nydailynews.com/news/national/u-s-secretary-sebelius-intervene-dying-pa-girl-article-1.1363389?localLinksEnabled=false

I find it interestering that a family member considers it morally acceptable to push for a policy change that would benefit their specific case.

"Ruddock, the aunt, called it “a question of morality” that children get a place in the adult line, given that a far higher percentage of children die waiting for pediatric lungs than do adults on that waiting list."

[Angel!]

Jun 5, 2013 13:05:04 GMT -5 mmhmm said:

I wish nobody ever had to get cystic fibrosis. 

Honestly, anymore no one should. 

It is simple to get tested to see if you are a carrier.  I know I am not a carrier &  I know my husband is not a carrier.  Therefore, I know not only will none of my children have CF, they won't be carriers either.  I imagine in the future it will become more popular to start testing for these things before conceiving.

[mmhmm]

Jun 5, 2013 13:12:01 GMT -5 Angel! said:

Jun 5, 2013 13:05:04 GMT -5 mmhmm said:

I wish nobody ever had to get cystic fibrosis. 

Honestly, anymore no one should. 

It is simple to get tested to see if you are a carrier.  I know I am not a carrier &  I know my husband is not a carrier.  Therefore, I know not only will none of my children have CF, they won't be carriers either.  I imagine in the future it will become more popular to start testing for these things before conceiving.

Agreed, Angel.  The problem is, will those who test positive accept the idea they should not have children or will they decide to go ahead and buck the odds?  Many do that now with genetic conditions, including CF.

[thyme4change]

The problem is, will those who test positive accept the idea they should not have children or will they decide to go ahead and buck the odds? Many do that now with genetic conditions, including CF.

Don't you have to have 2 positives?  So, you can have a kid, but maybe only one parent passes on their genetic material.  I could have two pregnancies - one with donated sperm + my egg, and one with a donated egg + my husband's sperm.  

[mmhmm]

Yes, thyme.  Both mother and father must be positive for CF to express in the child.

[Angel!]

Jun 5, 2013 13:18:26 GMT -5 mmhmm said:

Jun 5, 2013 13:12:01 GMT -5 Angel! said:

Honestly, anymore no one should. 

It is simple to get tested to see if you are a carrier.  I know I am not a carrier &  I know my husband is not a carrier.  Therefore, I know not only will none of my children have CF, they won't be carriers either.  I imagine in the future it will become more popular to start testing for these things before conceiving.

Agreed, Angel.  The problem is, will those who test positive accept the idea they should not have children or will they decide to go ahead and buck the odds?  Many do that now with genetic conditions, including CF.

Good Point. I have recently learned a lot about women with RH antibodies. Some women continue to have multiple babies after knowing that they will have this problem. It seems to me you have one kid that required blood transfusions while in utero, had to be delivered at 32 weeks, and spent 5 weeks in the NICU, and months recovering, and risking a lifetime of disabilities due to the early delivery, that you would count your lucky stars that the kid survived & not choose to have another (or several more) that would face the same issue.

ETA - they could use donated sperm to avoid the issue, but don't. 

[swamp]

Jun 5, 2013 13:12:01 GMT -5 Angel! said:

Jun 5, 2013 13:05:04 GMT -5 mmhmm said:

I wish nobody ever had to get cystic fibrosis. 

Honestly, anymore no one should. 

It is simple to get tested to see if you are a carrier.  I know I am not a carrier &  I know my husband is not a carrier.  Therefore, I know not only will none of my children have CF, they won't be carriers either.  I imagine in the future it will become more popular to start testing for these things before conceiving.

Nobody in my family had CF, nor in DH's family, as far as we knew.   At about 20 weeks into my first pregnancy, DH's cousin had a child born with CF.    As a result, I was tested and I am not a carrier.

However, DS was tested at birth and is a carrier, so we know that DH is a carrier.  He actually showed some signs of CF so we had to have him tested when he was a few months old.   

Had he known he was a carrier, he may not have had children. 

A few generations back, nobody knew what CF was, it was just a general "failure to thrive" so there probably were people with CF in DH's family, but they died young and nobody knew why.

[thyme4change]

I got tested for everything before I got pregnant. 

[swamp]

Jun 5, 2013 13:35:04 GMT -5 thyme4change said:

I got tested for everything before I got pregnant. 

I got tested for a lot of stuff, but since we didn't have a family history of CF, they didn't test me.  I guess I could have insisted on it, but both DH and I have huge families and we figured if we were carriers for CF, we would have had some relative with it.

DH's cousin married a Native American woman, and apparently it's really, really rare for them to be CF carriers.  Unfortunately, they hit the jackpot, and not in a good way.

[fairlycrazy23]

What I read/saw was that they want the rules change to allow children to put on the adult list, not just Sarah. And are not specifically asking for her to go to the top of the list, just that if she was on the list she would be at the top of it because of how they decide that, she is at the top of the pediatrics list.

[mmhmm]

Jun 5, 2013 17:53:31 GMT -5 fairlycrazy23 said:

What I read/saw was that they want the rules change to allow children to put on the adult list, not just Sarah. And are not specifically asking for her to go to the top of the list, just that if she was on the list she would be at the top of it because of how they decide that, she is at the top of the pediatrics list.

Even in that specific case, fairlycrazy, she has CF.  Shall she receive an available adult lung if that lung would save the life of someone who doesn't have a chronic lung condition?  Replacing the lung won't alter the course of the disease.

[Peace Of Mind]

Are smokers allowed to get a lung transplant?  Wouldn't that be kind of the same thing?  They'd just ruin the new lungs if they continued to smoke?  Just curious.  I remember reading about stars getting liver transplants that were alcoholics.  There was a big issue about that since they'd just ruin another good liver that somebody else could have gotten.   I think it was when Larry Hagman got his.  There was an uproar about his riches and fame, etc. 

I hope to never be in this kind of situation and have so much sympathy for anybody who needs a donor for a major organ.  Nor would I want to be the one to decide who gets it. 

[Angel!]

She is temporarily on the list for 10 days until a hearing.

www.nbcphiladelphia.com/news/local/Parents-of-Sarah-Murnaghan-Take-Lung-Battle-to-Federal-Court-210288231.html

[mmhmm]

No, POM.  In my experience, a smoker cannot get a lung transplant.  An ex-smoker might, but not someone who smokes.  The same would go for a liver; at least, around here.  Someone who WAS a heavy drinker might be eligible for a liver transplant if they no longer drink, but they wouldn't get a transplant if they're an active alcoholic.  I recall the bruhaha about Hagman but I don't know if he was drinking at the time the decision was made to transplant.  I just didn't follow that story closely.

I wouldn't want to have to make those decisions, either.  I'm glad I don't.  However, I can certainly see the logic, and the "rightness" of this one.

[Angel!]

I think a alcoholic has to be sober for 6 months to be considered.  And I know you can't be a current smoker to be considered for a lung transplant.

[deziloooooo]

Judge has ruled as a special case..her critical by time situation and allowed her to be considered for a replacement lung if she meets all other qualifications...

news.yahoo.com/judge-rules-favor-pa-girl-needs-lung-212110792.html;_ylt=AlKtj7HtmUESE447U5fSb78JVux_;_ylu=X3oDMTJhNXVnMnE1BG1pdANBVFQgMyBTdG9yeSBKdW1ib3Ryb24gSG9tZSBDYWNoZWQEcG9zAzE0BHNlYwNNZWRpYUF0dFdpZGdldHJvbkFzc2VtYmx5;_ylg=X3oDMTFkcW51ZGliBGludGwDdXMEbGFuZwNlbi11cwRwc3RhaWQDBHBzdGNhdANob21lBHB0A3BtaA--;_ylv=3

Interesting point I found..I guess I missed it as to what her medical condition is..CF...and some putting their medical knowledge out here as to whether the youngster should be considered because of her condition over other individuals..with all respect and not saying their knowledge of the disease is wrong or correct but personally I will let the real medical personnel..the medical Doctors on the case , make those decisions..I understand some posters here do claim some medical knowledge over and above the norm and I am sure they are telling the truth..Personally I am not aware of all these tests people are supposed to get before deciding on whether to have children...I am from a generation where for the most part that wasn't done though friends of my wife and I , in fact the husband is a Medical Doctor..because of their blood type..to have a child..especially more then one risked the second one to be born with mental deficiencies and they went along anyway and sure enough the second child was so born..but over all , this type of testing was not done by most of us..

From what I got from the original story was the youngster was denied being a candidate only because of her age..nothing else..prior condition or what her condition was..only her age..It seems these other concerns were ones brought out by posters here..their own feelings on... My feeling was its fine to have rules and all..but to look at a case individually too, especially when life and death are involved..to be at least considered in a final decision..is not such a bad idea and it seems for at least now a judge has done so and that is all we..{I}..can ask for..the final decision..that will be what it is to be...

You would think with all the deaths in the US..natural and not per day...we should have a better system for gathering organs then what seems to be the case now..I know I signed off on my organs years ago....drivers license ..being a senior, former smoker..one with some conditions now..not sure how useful my organs will be but at least they are available if any good , well will have to see..but hopefully more people will use this story to sign up as organ doners..

[mmhmm]

I'm listed as a donor, as well, Dezi, but a lot of people (you'd probably be surprised at how many) don't wish to donate their organs.  There are a number of reasons why these folks choose not to do so.   It's each individual's decision to make.

[thyme4change]

I found it interesting that the judge only gave her a 10 day ruling.  So, are the parents just sitting around hoping someone gets in a bad accident today.  Ugh!  Is the 10 days so someone has the time to change the law?

You would think with all the deaths in the US..natural and not per day...we should have a better system for gathering organs then what seems to be the case now.

According to House (the TV show) many organs of the obese aren't healthy enough to be donated.  So, that would reduce the pool of options considerably.  And we all know that hospital dramas on prime time television are the best place to get information about a subject such as this.  So, I know this is a reliable statement.  

[thyme4change]

Jun 5, 2013 18:44:49 GMT -5 mmhmm said:

I'm listed as a donor, as well, Dezi, but a lot of people (you'd probably be surprised at how many) don't wish to donate their organs.  There are a number of reasons why these folks choose not to do so.   It's each individual's decision to make.

I remember my roomy in college said she was not listed as an organ donor, because she talked to some medical person who told her they would harvest her organs.  I asked her why that was a problem, and she couldn't come up with a reason.  I guess giving A liver, or A heart wouldn't bother her, but when they take everything and give it away (as oppose to burn it, or throw it out, or bury it) it was unacceptable.  

[deziloooooo]

Ifm one has a religiouse reason tonot want to have organs harvested...I am sure there might be some religions that prohibit it..wouldn't surprise me if Orthodox Jews have a prohibition on that..will do a search...but except for that reason, religiouse ..when you step back and think for a minute of what happens to ones body after death...

As far as what organs..corneas , veins..arterys plus,  if acceptable,  possible major organs , especially from younger people..so much good can they do..especially today with medical advances....who would have ever thought lungs..and if lucky this youngster possible...only 10 years old and seems quite alive except for that problem..it would be a blessing...

mmmm....interesting, seems for the most part, organ donation is perfectly acceptable both by orthodox as well as the non orthodox...even donation of certain organs to help or save others while alive..such as a kidney..part of a liver and such..learn something new every day..LOL....

en.wikipedia.org/wiki/Organ_donation_in_Jewish_law

[mmhmm]

Jun 5, 2013 18:52:48 GMT -5 thyme4change said:

Jun 5, 2013 18:44:49 GMT -5 mmhmm said:

I'm listed as a donor, as well, Dezi, but a lot of people (you'd probably be surprised at how many) don't wish to donate their organs.  There are a number of reasons why these folks choose not to do so.   It's each individual's decision to make.

I remember my roomy in college said she was not listed as an organ donor, because she talked to some medical person who told her they would harvest her organs.  I asked her why that was a problem, and she couldn't come up with a reason.  I guess giving A liver, or A heart wouldn't bother her, but when they take everything and give it away (as oppose to burn it, or throw it out, or bury it) it was unacceptable.  

Over the years, I've heard a lot of unusual reasons from people who don't want to donate organs.  Some of them are based on religious beliefs.  Your roomie's reason isn't unusual, at all.  Lots of folks seem to think the medical community won't try to save your life if you're an organ donor.  There's a lot of misinformation out there, unfortunately, and a lot of superstition.

[mmhmm]

The only religion I know of that precludes organ donation, Dezi, is Shinto.  For most, the decision is left to the individual.  It is the individual's interpretation of their religion that leads some of them to feel organ donation isn't the right choice.

[Cookies Galore]

Jun 5, 2013 18:50:58 GMT -5 thyme4change said:

I found it interesting that the judge only gave her a 10 day ruling.  So, are the parents just sitting around hoping someone gets in a bad accident today.  Ugh!  Is the 10 days so someone has the time to change the law?

Well, two people did die in that building collapse earlier today in Philly.

[The Captain]

mmhmm or anyone else with a medical background...

I'm really confused about this case - the articles quote her doctors as saying her prognosis with a transplant would be excellent .  However I thought Cystic Fibrosis was genetic and chronic and would cause her body to attack the new set of lungs the same way the old set was attacked (she's near death after only 10 years).

Is a life extension of 10 years with a sentence of deterioriating health considered an excellent prognosis.

Honestly, what am I missing?