Pa. girl's parents challenge lung donor rule

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Hospitals commonly hold press conferences regarding medical cases in the news with the permission of the family. (Octo-mom, hand transplants, etc)

As publicity-hungry as this family was pre-transplant, it is curious to me how they have not pursued this avenue post-transplant. From the beginning, all (or the vast majority anyway) of the information about this child has come from the family, not the physicians.

Just an observation...
 
Reader said:
I don't remember anybody on this thread saying or posting an article that states she is/can be cured by the transplant.
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My post hasn't stated anything about anybody on this thread saying or posting she will be cured by lung transplant. I am talking about msm articles like the one below claiming her condition will be "essentially cured" by lung transplant. Which is not true. She still has cystic fibrosis.
Her life expectancy isn't normal. Average survival in children with cystic fibrosis after lung transplant is 3.4 years, according to the study I posted upthread.

"But if they get a lung transplant, the condition is essentially cured."
http://www.whas11.com/news/health/P...t-Out-of-Reach-for-10-Year-Old-209322251.html
 
I'm getting a bad feeling about the media silence on this little girl's case......
 
The fact that she is still intubated nearly two weeks post-transplant tells me that the lungs are not working as expected- as the ONLY reason to be on a ventilator is to take over for the lungs when they fail to provide adequate gas exchange. Sad.
 
meanmaryjean said:
The fact that she is still intubated nearly two weeks post-transplant tells me that the lungs are not working as expected- as the ONLY reason to be on a ventilator is to take over for the lungs when they fail to provide adequate gas exchange. Sad.
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I don't know how one would expect them to work. Lung transplants are difficult to begin with, and very, very few were done from an adult to a child.
 
MsFacetious said:
Some rules need to be changed. Some rules are not fair.
If they didn't change we would still have slaves, segregated drinking fountains and only men voting.

I know a woman with CF who has had TWO double lung transplants in FIVE years. No publicity.

However, many people agree that kids with CF, disabled kids, disabled adults shouldn't be eligible.
That those good organs shouldn't be wasted on people with other things going against them.

That is why MY precious, amazing daughter will never be eligible for a transplant.
Because she is "disabled" or "defective" or "not good enough" to get one.

We give transplants to babies all the time, who cannot take care of themselves.
However, "cannot manage care themselves" is used to deny someone with Down syndrome a transplant.

It's all a matter of perspective. My daughter has done more good in her life than many adults I know.
My daughter has saved and changed lives. Her drug addicted hooker aunt got a liver transplant. :banghead:

Some people think a black person, gay person, or person with a criminal record, should not be eligible.
Everyone has a different opinion of what "worthy" is. :twocents:
I just hope and pray that I never again have to fight to prove my daughter is worthy of life. :please:
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But Down Syndrome isn't fatal, cystic fibrosis is.
 
jjenny said:
I don't know how one would expect them to work. Lung transplants are difficult to begin with, and very, very few were done from an adult to a child.
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How they are expected to work is to provide adequate gas exchange with little to no mechanical assistance within a few days of transplantation. That is the expectation.

And, sadly for this child, it is not happening.

No snark intended, just pointing out that the reason she was originally denied adult lungs (the 'fit' problem) was valid. They had to cut out an entire lobe and then some to make these adult lungs fit this child, and now they are not providing her the help she so desperately needs.

Would the outcome be different if she had gotten appropriate-sized lungs? Maybe, maybe not - hard to say - but it is not looking good right now from this nurse's vantage point.
 
Interesting.......

I'm guessing the 'machines' the family refer to is actually ECMO (extra corporeal membrane oxygenation)- which is basically heart-lung bypass. It is the ultimate life support apparatus, very dangerous for the patient because of the extreme risk of bleeding. This is a therapy that we use at my hospital and I care for pediatric ECMO patients. Yikes.

Oh, can I add this? The fact that she is now 'taking a few breaths on her own' does NOT mean that the new lungs are functioning well. Not by any stretch of the imagination. Respiratory effort does not equal respiratory function.

And just so we are perfectly clear- I really, truly wish this girl well. I am a pediatric ICU nurse. My entire adult life has been spent nursing the sick and injured. I have expressed my thoughts about how she got these lungs, and my feelings about over-ruling medical opinion by publicity campaigns. My comments are meant to try and translate the medical jargon and spin that has accompanied this story. Period.
 
meanmaryjean said:
Interesting.......

I'm guessing the 'machines' the family refer to is actually ECMO (extra corporeal membrane oxygenation)- which is basically heart-lung bypass. It is the ultimate life support apparatus, very dangerous for the patient because of the extreme risk of bleeding. This is a therapy that we use at my hospital and I care for pediatric ECMO patients. Yikes.

Oh, can I add this? The fact that she is now 'taking a few breaths on her own' does NOT mean that the new lungs are functioning well. Not by any stretch of the imagination. Respiratory effort does not equal respiratory function.

And just so we are perfectly clear- I really, truly wish this girl well. I am a pediatric ICU nurse. My entire adult life has been spent nursing the sick and injured. I have expressed my thoughts about how she got these lungs, and my feelings about over-ruling medical opinion by publicity campaigns. My comments are meant to try and translate the medical jargon and spin that has accompanied this story. Period.
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I am very surprised they gave her a second set of lungs with pneumonia. Shouldn't that prevent the lungs be useful for transplantation?
 
jjenny said:
I am very surprised they gave her a second set of lungs with pneumonia. Shouldn't that prevent the lungs be useful for transplantation?
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That just REEKS of last-ditch effort. Yes, pneumonia should be exclusion criteria. But who knows with this case now. As it has been from the beginning, ALL of the information is filtered through the parents, we have heard nothing from the professionals.
 
I can't believe she got another transplant so quickly after the first set failed. Does that seem odd to anyone else? Do other transplant patients who have a failed transplant get another try again in just a few days?

ETA: I spoke too soon. No, they don't. It's very rare to get another try like she did. This reeks of favoritism and using a judge to bypass decisions that should be made by medical experts.

The parents used the media to get what they wanted and then go mum after they get what they want, IMO.
 
Meanmaryjean, how common is it for the diaphragm to become paralyzed like that?

Like others, I do hope this little girl makes it. But I am very uncomfortable with the change in rules that was made for this one girl. Wat about other children, or adults, who do not have the media savvy or time/money to make such appeals to both the media and the courts? :(
 
eileenhawkeye said:
The only reason this girl got bumped to the top of the list 2x within the span of a few weeks is because of the amount of ad revenue her story brings in. I hope her parents remember to send cards to all media executives this holiday season because they are the only reason she received special treatment.
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I'd agree that media coverage (and the judicial ruling resulting from that--for not just her, but for any who would opt for a special review) effected her getting that first transplant. But Sarah got put back on the list the day after transplant #1 by her doctors--and actually got the second set of lungs 3 days after the first transplant. Media likely had little to do with it at that point--the docs put her back on the list, based on her critical condition. And, while the second set seemed to come in record time, it should also be noted that they were diseased lungs, and likely not considered optimal for those on the waiting list who were not as desperate as she was (docs said she was dying). Meanmaryjean had it right, it seems--it was an act of pure desperation as she was on life-support machines.

Sarah Murnaghan's mother said the first set of lungs failed within hours after the June 12 transplant at Children's Hospital of Philadelphia and Sarah was placed on machines. She was placed back on the lung transplant list the night after her surgery and received a second set of lungs on June 15.
http://www.usatoday.com/story/news/nation/2013/06/28/girl-second-lung-transplant/2473549/
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an ideal solution would be for countries like australia (where i am based) to follow the donor system that spain has: everybody is consider a donor and they have a good success rate with transplants.
it is heartbreaking reading the statistics of people awaiting an organ transplant...if you are religious it should be seen as the ultimate gift to others: the gift of life. i cannot understand the point of refusing to be a donor on religious grounds...
my ex has had a kidney transplant, luckily for him his mother chose to be a live donor, her reasoning was that, if she donated hers to him, someone else who was sicker could have a chance of getting the transplant quicker if he wasn't on the waiting list.
he has had the kidney for 21 years...
 
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