Pa. Girl Who Got New Lungs After Parents Sued Over Transplant Rules Develops Pneumonia
Source: Associated Press
A 10-year-old Pennsylvania girl who had a pair of adult-lung transplants after her parents sued to change national rules regarding organ donations has developed pneumonia in her right lung, which her mother described on Monday as "a large setback."
Sarah Murnaghan's mother wrote on her Facebook page that after a "tough" day on Sunday, Sarah's condition had become more stable on Monday. She said her daughter's doctors believe the infection was caused by "aspirations from her belly," which is the entry of stomach contents into the lungs.
"We have an amazing team of doctors who go above and beyond but also walk this road with us in such a kind and compassionate way," Murnaghan wrote.
Sarah has been at Children's Hospital of Philadelphia for months with end-stage cystic fibrosis, a chronic genetic disorder that causes sticky mucus to build up in the lungs, pancreas and other organs. The girl from Newtown Square, Pa., a Philadelphia suburb, was a top candidate for organs from a child donor but none was available and her parents sued to change a national transplant policy that put her at the bottom of the adult list for patients 12 and older.
Read more: http://www.grandforksherald.com/event/apArticle/id/DA7DH3L00/
Not good, not good at all. Godspeed.
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CaliforniaPeggy
(156,619 posts)Poor kid. To go through all that, and now this.
Good vibes to her!
Yo_Mama
(8,303 posts)The first transplant, the second, then the diaphragm repair? This poor kid!
After all this it will be even more heartrending if she dies.
darkangel218
(13,985 posts)Pneumonia is expected, due to the imuno supressors she is probably on.
My gut feeling is that she will be just fine.
Hulk
(6,699 posts)In my humble opinion, this whole episode developed to disgrace the Obama administration for having any rules on how to best allocate organs to recipients. Fox-nonsense jumped right on it, in an attempt to make Obama look like he was out to kill this little girl.
Now, she's wasted one set of lungs that could very possibly have saved AN ADULT'S life, and she's very possibly going to waste another. This is just tragic. Why this is even in the news is beside me.
dkf
(37,305 posts)I hope she makes it or this will make it even more difficult for a child to get adult lungs when they have a better prognosis than this poor girl. She has other hurdles besides her lungs.
Hulk
(6,699 posts)There are reasons why someone under 12 should not receive adult lungs. It would be a different story if we had a surplus of lungs for those needing to fend off death. But we don't. And this young girl, although precious I'm sure, has just taken and wasted one set, and may just have wasted a second set. That's two adults that might be alive today were it not for this charade.
COLGATE4
(14,886 posts)People get too emotionally involved when a child is in the equation, but the sad fact is that, in general terms an adult's lungs are not appropriate for transplant into a child (for a variety of technical reasons). When good medical practice takes second place to emotion rather than fact this type of problem occurs. So now, as you say, two adults who also desperately needed those lungs didn't get them and at least one set was essentially wasted.
Rowdyboy
(22,057 posts)It needs attention
laundry_queen
(8,646 posts)is that she received lungs that generally would've been rejected because they were such poor quality because her situation was so dire. So, no one likely died because she got lungs. If someone is stable on the transplant list (ie not immediately dying) then they usually wait for decent quality lungs. Many are rejected. So they took the rejects and gave them to this dying girl as a last ditch attempt to save her. I don't see what's so awful about it. Those 2 hypothetical adults you talk about probably wouldn't have received those lungs anyway.
Here in Canada, there is no age restrictions. From what I understand, it's about who is the sickest, period. There are so few children who need lung transplants that it doesn't make any noticeable difference in wait times at all. The issue should be is why there are so few organ donors. Talk to your family - register if you can also, but talking to your family is the most important thing. Learn about the myths and realities.
One of the realities about lung transplantation is that lungs only last, on average, 5 years. Many people develop chronic rejection after a year or 2. It's pretty much a crapshoot for anyone looking for lungs. It's a shitty situation to be in, adult or child. The chances are, even if this child pulls through the pneumonia (which is common, especially since the second set of lungs were actually infected when she received them) and makes a full recovery - chances are she'll be back at square 1 before 5 years is up. She very likely won't grow up.
Also, many people on the list are waiting for their second set of lungs. They've already had their chance - now they need another chance. Is that fair, if someone is waiting for their first chance? What about people who destroyed their own lungs through smoking? What about this one woman I read about - she had a particular issue that made it so she was rejected at many lung transplant centers around the country. She finally found one that would take her, but she was already very sick. Her chances of surviving any length of time after a transplant was crappy because of her issue, but this one transplant center did her transplant despite the dire outlook and statistics. That person is alive today 7 years later. Should she have not gotten lungs because she was supposedly not likely to survive? Do you see what I'm getting at? The ethical issues are complex and I don't think it's accurate or fair to say because this child got 2 sets of lungs, 2 people have to die. That's not how it works.
Hulk
(6,699 posts)The first set she received were of poor quality? Seriously? I haven't read that anywhere.
I have read and heard from several sources that adult lungs are not an adequate fit for a small child's lung cavity. That, is a fact.
Nobody was willing or waiting to take that first set of lungs? I haven't read that anywhere neither.
I think you are bringing up lots of hypothetical situations that I haven't seen any substantiation of evidence to support. Maybe you can share with me those sources of info you've pulled all this from.
As for your final conclusion; interesting. I don't see any of that information being relative to this situation. Poor overall physical condition should probably be a factor. Out-living the expected span when you have poor overall health is a nice story - but, again, irrelevant.
I have trouble accepting posts with info that is either unsubstantiated, or worse yet, made up. How about a few sources, and I'll buy your points.
laundry_queen
(8,646 posts)I could spend hours here giving you links but you have 'the google' at your finger tips. I have spent hours and hours reading blogs about people with lung transplants, medical studies, Canadian news about lung transplants and so on. I can't fucking link to my brain. Here's a link to one of the blogs I read:
http://livingmydreamswithcf.blogspot.ca/2013/07/my-thoughts-on-lung-transplant-policy.html?m=1
Most of the situations I bring up are not hypothetical. Go ahead - go read some blogs from people who get lung transplants. What I've mentioned actually happens. Let me guess, first hand accounts of lung transplants aren't 'sources' to you. I can tell from your rude tone what you want and I don't have NEJM articles for you. Other people have said some of the same things I have further down thread. If you have a problem with it and don't want to believe it - whatever. I don't care.
somehow I missed the story of her getting a second set! That's insane.
I feel awful for her and her family, but other families are gonna lose loved ones because of this misguided adventure.
dkf
(37,305 posts)Hulk
(6,699 posts)Adult lungs are not conducive to fit such a small lung cavity. But, because of all the publicity and Obama/Sebillius bashing, she has now had her second set, and things aren't going so well as of this writing.
I certainly hope she makes it and gets well. If not, what a shame it will be to those who missed out because she received adult lungs that were suggested not to work in her case.
JI7
(93,616 posts)but it was used by the right wing as an example of the death panels they were always going on about.
when the truth is that it's the medical professionals who come up with these rules .
Squinch
(59,522 posts)that were implanted, all the surgeries, all the pain and suffering.
A "death panel" would have saved her a lot of suffering, and would have allocated the resources to someone who could actually use them. I know it sounds callous, but it is simply true: Sometimes we die.
Yo_Mama
(8,303 posts)And the decision to put her on the adult list (and so carve up a set of donated lungs to fit them into her chest) had nothing to do with the Obama administration. It was a judge.
This is one story that has nothing whatsoever to do with the Obama administration.
The judge now - hopefully he has only killed one other person. Hopefully this set can be saved.
alp227
(33,282 posts)who do NOT give a shit about the FACTS that ObamaCare had not a damn thing to do with the transplant rules! And in either case those brainless bastards would be screaming DEATH PANEL because if Sarah got the lungs - it's at the cost of ADULTS who need the lungs & vice versa!
Deep13
(39,157 posts)dkf
(37,305 posts)CaliforniaPeggy
(156,619 posts)That's how bad.
dkf
(37,305 posts)
Monk06
(7,675 posts)give someone maybe tens years extra. Unfortunately for children there are just too few available. The trouble for young and middle aged adults is that if the lungs go the heart is probably in bad shape too. I'm lucky ten years of fairly extreme off road cycling left me with a strong heart.
Auntie Bush
(17,528 posts)I'm also sending healing prayers to you too.
Monk06
(7,675 posts)short before their time. At sixty one I've had a good run so five or ten years more would be fine with me.
Unfortunately given what I have learned adult lungs in a juvenile chest means the diaphragm can't fully inflate the lung. Infection is an almost certainty. Poor girl I hope she makes it but it does not look good.
Deep13
(39,157 posts)CaliforniaPeggy
(156,619 posts)My understanding is that the folks who are diligent about taking their anti-rejection drugs in a rigorous, timely manner, also do very well.
leftyladyfrommo
(20,005 posts)It was pretty terrible at first as she had complications. Then she lived about 5 years. The medicine she received for the transplant caused her to get cancer and she died from the cancer. I don't think the 5 years she lived were very good ones.
Lunabelle
(454 posts)Poor child. I hope they are making peace.
Demit
(11,238 posts)How many more surgeries? How many more sets of lungs?
Igel
(37,535 posts)To make the parents happy.
It's hard to accept bad things. A car crash would be a hard thing to accept.
It would be even harder for any parents to accept their little girl's death from something like cancer. You watch them slowly die after years of the slow poisoning called chemo--or they go into remission, and you wait after every checkup for bad news. Horrible.
Now pitch in that she's suffering from cystic fibrosis, a genetic disease. She just needs one copy of a certain gene to live a relatively normal life. Each of her parents provided a faulty copy. Each of her parents is responsible for her slow, painful death--even if they didn't know so there's no way they could be held responsible in any other than a genetic sense, it doesn't matter. They had their daughter and their DNA programmed her to have a very good chance of dying by drowning in her own mucus.
Imagine the emotions the parents will be feeling.
Demit
(11,238 posts)As I can't even imagine what the girl is feeling. Or what the family members of the other people on the waiting list for lungs are feeling. It is tragic for everyone.
Deep13
(39,157 posts)Death is inevitable and at some point the futile attempt to save her is just piling on cruelty. It has only been very recently that parents have had the luxury of assuming their children will survive them. It used to be pretty typical to lose half of ones children to disease before they grew up. I don't want to minimize the anguish of the parents, but they really need to accept their loss and move on.
Sheldon Cooper
(3,724 posts)by being able to reassure themselves that they did every possible thing they could do for her before letting her go. I think that it's just a matter of time for this little girl, but if she were my daughter I can't say I'd do things any differently. That's because I honestly don't know how I'd react.
Deep13
(39,157 posts)laundry_queen
(8,646 posts)I think it may be extra hard for the parents in this case, because not only is CF genetic, but there is so much hope right now for a cure.
My 2nd daughter was tested for CF as an infant 13 years ago (wasn't gaining weight very fast, lung infections, messy poos) and while we were going through testing all we heard from the staff at the CF clinic was how the median age was in the 30's now and that by the time my daughter, if she had CF, was an adult there would likely be a cure. It was all very positive. I imagine these parents went through the same thing. Now can you imagine going from that to your daughter dying at age 10? It's something that's pretty rare even in the CF community. They likely weren't prepared for it.
Luckily my daughter tested negative and eventually outgrew her issues. I don't even want to begin to imagine how I'd be coping if I were in these parents' shoes.
Sgent
(5,858 posts)I feel so bad for her and her parents. This is unbelievably difficult for any feeling person to read about.
I am however upset that we changed the organ transplant process for the good of one person. Until we have a excess of organs over those who need them to survive, we should not change to process due to one particularly tough case, but it should be decided in a reasoned manner. Rationing of a potentially life saving treatment is never easy, but there are good and bad ways to do it.
telclaven
(235 posts)When I was in Iraq, I saw a report about Army doctors performing a type of surgery unapproved by the EPA. It was a total lung bypass, using a device/material developed in Germany I believe, that allowed them to save the life of a Soldier whose lungs were ruptured by an IED. I'm not aware of the specifics, but in general it was a sheet of material (kevlar? mylar? spectra?) that was fed blood from the femoral artery, allowed the blood to oxigenate (is that the word?), and returned via the other leg's vein. The military doctors were able to do this procedure because the Army is outside the EPA's jurisdiction when in an operational environment and the Soldier would have died anyway without the surgery, so why not? It worked, but in this case it was to allow the Soldier's body time to heal.
I wonder, is this something that could be used? At this point, as a parent, I'd move heaven, hell, and the internet to save my daughter's life. Could something like this be used to keep her alive longer until a better lung set could be procured?
NNguyenMD
(1,329 posts)It's very similar to ECMO, like a dialysis machine that performs the gas exchange that your lungs are incapable of performing. Not aware of its use in the US. These types of therapies require a lot of blood flow an large IV catheters that go into large blood vessels. Which means a potential source of.infection, and in all likelihood would also require being on some sort of blood thinner to prevent clots from forming in the machine and tubing.
This is a horribly tragic story. Lung transplants are the most challenging solid organs to maintain and have a notoriously high complication rate. My deepest prayers go out to this little girl and her family. I don't pretend to understand the anguish and pain this family is going through. But when it comes to an incredibly scarce resource like solid organs, I do believe in a dispassionate system to allocate these organs based on medical expertise not not by judges and certainly not the media.
I'm not up to speed on the prevalence of dual LUNG transplant recipients, or if children can only receive dual LUNG transplants. But for adults the norm was single LUNG transplants to each recipient, meaning there were 4 potential adult recipients of these adult sized lungs. However for the lungs infected with pneumonia, the second and current set she has, it is possible that they would have been declined by all the potential recipients in the area she lives.
graham4anything
(11,464 posts)So she had four lungs.
Originally it was said there was a reason someone her age was not on the adult list.
JI7
(93,616 posts)rather than discuss why we have certain rules in place concerning these transplants their reporting made it seem as if Sebelius was able to decide with a yes or no whether this girl will live.
DeschutesRiver
(2,359 posts)Apparently, there was no time to find better lungs, once the first ones failed, and the parents were made aware that this was a high risk move to use this infected pair.
It sounded as though the first pair were not in good shape either.