Pa. girl's parents challenge lung donor rule

[jjenny]

They're parents. They don't want to lose their daughter. A LOT of parents would do anything to keep their kid alive. I don't blame them. JMO

Parents are obviously desperate not to lose their child and would do anything to keep that child alive. But that is why we have rules and procedures in place, not put by parents, but by people who are supposed to know what they are doing.
Just like in the justice system, victims are not the ones giving out punishment. I don't agree with judge changing the rules for one or two specific children.
Now what is to stop the rest of people waiting for transplants from suing?

 

[angela]

They're parents. They don't want to lose their daughter. A LOT of parents would do anything to keep their kid alive. I don't blame them. JMO

I can't blame them either. I would stop at nothing to save my child.

 

[angela]

It also didn't sound like they were letting her bump someone worse off than her from the list. My understanding is that it is based on who needs it the most and is compatible. I'm just glad it all seems to have gone well.

This is my understanding as well. She was very ill went to the top of the adult donor list because organs go to the most ill on the list.

 

[Reader]

RSBM/BBM:
Its executive committee held an emergency meeting this week but resisted making emergency rule changes for children under 12 who are waiting on lungs, instead creating a special appeal and review system to hear such cases.

"When the transplant community met, they didn't want to change that rule without really thinking carefully about it," he said. The appeals process that was established this week, he said, was "built on evidence, not on influence."

http://www.centurylink.net/news/rea...p-pa_girl_who_took_on_organ_donor_rules_ge-ap

Parents are obviously desperate not to lose their child and would do anything to keep that child alive. But that is why we have rules and procedures in place, not put by parents, but by people who are supposed to know what they are doing.
Just like in the justice system, victims are not the ones giving out punishment. I don't agree with judge changing the rules for one or two specific children.
Now what is to stop the rest of people waiting for transplants from suing?[/QUOTE]

The fact that an appeals process was established for comparable situations to this one.

Frankly, I hope they do change the rule and put all children on the list equal to adults. If the child's doctors say they can transplant an adult lung (or other organ) into the child, then it would still be based on who is the neediest, most ill at the time a part becomes available. Why should the life of a child under 12 be valued less than those over 12 or an adult?

 

[jjenny]

We have been discussing this over and over again. Adult lungs don't fit into a child. To make them fit, doctors have to trim the lungs off. Another adult into which lungs would fit is going to be a better candidate for the transplant than a child, with more chances of success.

 

[Reader]

We have been discussing this over and over again. Adult lungs don't fit into a child. To make them fit, doctors have to trim the lungs off. Another adult into which lungs would fit is going to be a better candidate for the transplant than a child, with more chances of success.

Then why would/did the EC establish the 'special appeal and review system' to hear these cases for children if they did not think it was necessary?

I don't think there is a definitive answer here. It has to be reviewed case by case. If an adult is needier or sicker than the child at the time, then he/she would be the one to receive the lung, is what I understand.

 

[BuzzieCat]

Then why would/did the EC establish the 'special appeal and review system' to hear these cases for children if they did not think it was necessary?

I don't think there is a definitive answer here. It has to be reviewed case by case. If an adult is needier or sicker than the child at the time, then he/she would be the one to receive the lung, is what I understand.

http://www.washingtonpost.com/busin...d9f7fc-d22f-11e2-9577-df9f1c3348f5_story.html

The executive committee of the Organ Procurement and Transplantation Network held an emergency teleconference Monday evening and resisted making rule changes for children under 12 seeking lung transplants, but it created a special appeal and review system to hear such cases.

Dr. Arthur Caplan, a bioethicist at New York University’s Langone Medical Center, said the vote showed that the medical profession doesn’t believe that it should be pressured into making hasty changes to the entire national transplant system based on a single case.

The special review option will expire on July 1, 2014, unless it is voted otherwise.
Also

While members of the network’s executive committee voiced sympathy for anyone who is waiting for a transplant, they noted that making any sudden change to the system to help one group risks harming some other group. The existing system was created after years of reviews by numerous medical professionals and members of the public.

 

[eileenhawkeye]

[/B]

According to posts made above, no adult needing a transplant was overlooked due to this child's case.

BBM...That seems to be kind of harsh/sarcastic...The girl was dying. I can't blame the parents for taking whatever steps they felt necessary to save the life of their child.

Just because some procedures have been set up for a long time does not mean they are always correct. It seems this system needed to be shook up and opened up for examination on how they consider children. Why are children less than 12 YO considered less valuable than children over 12 and adults (for all transplants not just lungs)?

I'm glad they will be testing this new appeals system for a while to see how it works and hopefully will lead to some changes.

Children under age 12 are on a different list because adult lungs are not "compatible" with their body. Why not give the lung to the person with the highest chance of success?

 

[BuzzieCat]

It wasn't made a rule because children under 12 are considered to be worth less than those over 12.

 

[Reader]

Children under age 12 are on a different list because adult lungs are not "compatible" with their body. Why not give the lung to the person with the highest chance of success?

Well, they did state that this child's transplant was a success. And from the information given, she did not bump any adult from receiving the lung. Why not make it available to a child if there is no one else sicker/needier and the doctors say it can be done successfully? Why not give the child a chance to live?

It wasn't made a rule because children under 12 are considered to be worth less than those over 12.

I'm now talking about all organ transplants and the policy toward children. Let's go back to my OP article which states this policy only began in 2005:

Under a policy instituted in 2005, organ allocation policies are supposed to be based on severity of illness rather than the amount of time on the waiting list, but that approach only applies to patients over the age of 12.

Why was that change made in 2005 and why are children under 12 not considered by their 'severity of illness' as other patients are? It seems to me that this policy definitely puts them at a disadvantage of receiving a transplant of any organ no matter how sick they are, i.e. they are treated differently due to their age (under 12).

I'm asking, not arguing...it just seems very unfair to me.

 

[eileenhawkeye]

The operation for the child was a success at this point because she survived it. It doesn't mean she won't have complications in a few weeks or months...somewhere down the line. I have read that she will definitely need another transplant in the not-so-distant future. We will be hearing from the parents again when that happens, as they will make another big stink to get her to the top of the list again.

Of course she bumped an adult(s). If she was on the child's list before where she belonged, one or two adults would have gotten the lungs instead. Now, they are probably dead. And as I said before, no way do I believe she was the sickest no matter what anyone claims. There are many people who need a transplant immediately...How do they even measure who is the sickest when it's that urgent? Articles say she had weeks to live, what about people who have days to live? I wish the relatives of the person(s) who were suppose to get the lungs would come forward. They would get the love and support of the American public.

 

[Reader]

To ease shortage of organs, grow them in a lab?

http://www.centurylink.net/news/rea...ap-to_ease_shortage_of_organs_grow_them_in-ap

NEW YORK (AP) — By the time 10-year-old Sarah Murnaghan finally got a lung transplant last week, she'd been waiting for months, and her parents had sued to give her a better shot at surgery.

Her cystic fibrosis was threatening her life, and her case spurred a debate on how to allocate donor organs. Lungs and other organs for transplant are scarce.

But what if there were another way? What if you could grow a custom-made organ in a lab?

It sounds incredible. But just a three-hour drive from the Philadelphia hospital where Sarah got her transplant, another little girl is benefiting from just that sort of technology. Two years ago, Angela Irizarry of Lewisburg, Pa., needed a crucial blood vessel. Researchers built her one in a laboratory, using cells from her own bone marrow. Today the 5-year-old sings, dances and dreams of becoming a firefighter — and a doctor.

Growing lungs and other organs for transplant is still in the future, but scientists are working toward that goal. In North Carolina, a 3-D printer builds prototype kidneys. In several labs, scientists study how to build on the internal scaffolding of hearts, lungs, livers and kidneys of people and pigs to make custom-made implants...........

More at 5p. article.....

 

[Linda7NJ]

So how's the kid doin?

No updates?

 

[Reader]

So how's the kid doin?

No updates?

This is the latest I can find:

http://abclocal.go.com/wpvi/story?section=news/local&id=9141838

PHILADELPHIA - June 17, 2013 (WPVI) -- In a new Facebook post, the mother of 10-year-old Sarah Murnaghan said her daughter is making 'baby steps in the right direction' following last week's lung transplant.

About mid-afternoon, Janet Murnaghan, of Newtown Square, was sounding upbeat in her latest Facebook posting.

"Looking forward to the blessed day when I hear her little voice again," she said. And she went on, "Although wondering if her first words will be stop kissing me, because I pretty much do it non-stop."

Late this morning, Murnaghan indicated it had been a good night for Sarah, who remains in the intensive care unit at Children's Hospital of Philadelphia.

That echoed a post made about 10 hours earlier in which Janet said that Sarah was able to "back off some of her vent settings in terms of her O2 [oxygen] requirements."

Janet continued, saying "Sarah's x-rays improved a little today too. She is still fully sedated and critical." ...........

Sarah's family said she was in a coma before the transplant and had perhaps only a week to live.

More at link....

 

[Linda7NJ]

This is the latest I can find:

http://abclocal.go.com/wpvi/story?section=news/local&id=9141838

PHILADELPHIA - June 17, 2013 (WPVI) -- In a new Facebook post, the mother of 10-year-old Sarah Murnaghan said her daughter is making 'baby steps in the right direction' following last week's lung transplant.

About mid-afternoon, Janet Murnaghan, of Newtown Square, was sounding upbeat in her latest Facebook posting.

"Looking forward to the blessed day when I hear her little voice again," she said. And she went on, "Although wondering if her first words will be stop kissing me, because I pretty much do it non-stop."

Late this morning, Murnaghan indicated it had been a good night for Sarah, who remains in the intensive care unit at Children's Hospital of Philadelphia.

That echoed a post made about 10 hours earlier in which Janet said that Sarah was able to "back off some of her vent settings in terms of her O2 [oxygen] requirements."

Janet continued, saying "Sarah's x-rays improved a little today too. She is still fully sedated and critical." ...........

Sarah's family said she was in a coma before the transplant and had perhaps only a week to live.

More at link....

Thank you for posting!

 

[Reader]

Sarah Murnaghan awake and responsive after lung transplant

http://www.cnn.com/2013/06/22/health/pennsylvania-girl-transplant/index.html?hpt=hp_t2

(CNN) -- Sarah Murnaghan, the Philadelphia girl who underwent a lung transplant last week following a court battle, is out of a coma and responsive.

The 10-year-old woke up Friday night, said Tracy Simon, a family spokeswoman.

Although she remains on a ventilator and is unable to talk, she is nodding and shaking her head in response to questions, Simon said.

Prior to her surgery, Sarah, who suffers from cystic fibrosis, was put in a medically induced coma to allow her body needed rest prior to the transplant surgery.........more........

 

[meanmaryjean]

Despite my feelings on the whole transplant / court involvement issue: I do wish the child well. (I am a PICU nurse and work with these children).

HOWEVER, I find it curious that all the updates have come through the family- not the hospital. And the fact that she is still on the vent may or may not be troubling (my hospital only does renal transplants in pediatric patients).

 

[jjenny]

Hospital might not be able to update about her medical condition because of HIPAA laws. She got a lung transplant, but she still has CF. Despite some articles claiming she can be "cured" by lung transplant. Lung transplant does not cure CF.

 

[eileenhawkeye]

Hospital might not be able to update about her medical condition because of HIPAA laws. She got a lung transplant, but she still has CF. Despite some articles claiming she can be "cured" by lung transplant. Lung transplant does not cure CF.

And she will definitely need another transplant in the near future.

 

[Reader]

Hospital might not be able to update about her medical condition because of HIPAA laws. She got a lung transplant, but she still has CF. Despite some articles claiming she can be "cured" by lung transplant. Lung transplant does not cure CF.

I don't remember anybody on this thread saying or posting an article that states she is/can be cured by the transplant.