Why Is She More Important? Organ Transplant Question

Her parents fought for the right to PUT her on the adult list, not to necessarily put her on the top of it. The adult lungs still go to the sickest person, any adult that was more sick than her would get the first available lungs. I hope that this case changes organ availability based on an arbitrary age rather than a need when an organ that is a safe match is available..

She has been on the list longer, much longer, than who ever had to wait a little longer.

I am really not understanding what you are upset about.

They didn't get her moved to the FRONT of the list... (she was kind of already there) they fought to get her allowed to receive an adult lungs. It wasn't about her being more important at ALL, it was about her not being LESS eligible for a healthy organ.

The entire organ recipient list is about deciding who is "most important." It isn't like a theme-park line. It's not first come first served. There are a number of factors that decide who gets an available organ. If a pair of lungs came available and without her age they'd come to her, I don't see how giving them to her despite her age is making her any more MORE important than giving them to her because she was near death, or because her other organs are healthy, or because she's a good match is making her more important.

They didn't change ANYTHING about the rules of the recipient list other than medically unnecessary age restrictions (since it is now known that children CAN physically receive adult lungs).

I think you're misunderstanding what happened here.

She was on the pediatric transplant list. Which means that the donor would be a child who had died. The problem was that there are very few instances of pediatric lung donations. The "pool" is smaller, which means her liklihood of finding a match donor was next to impossible.

So they fought to have her put on the adult transplant list, where there would be a lot more donors and a much larger pool...increasing her chances of a match.

She didn't push anyone out of the way. The list is prioritized based upon the severity of the condition, age of the patient, and several other factors. If anything, she was likely on the pediatric transplant list longer than ANY of the adults on the adult list. So once the appeal was approved and she was placed on the list, she was placed based on her need. Many organ donors die every day, and many people on the transplant list get their organs.

So she got her lungs. And someone else got some eyes, skin, a heart, a liver, kidneys, and whatever else could be saved from that donor. Praise God for organ donation. He truly is a healing God.

It didn't make her _more_ important. It made her _just as_ important. Big difference.

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ETA: To Dana K. No no no no no! While genetic testing of family members might identify the possibility of CF, it's most accurate if testing is conducted on older siblings, and even then it is still only a probability, not a certainty. The only way you can really know is to test the fetus. And then the only "prevention" is to abort. Or decide that since there is a possibility of CF, never to have children at all.

I disagree with your interpreatation. I think that what the ruling is saying is that age alone should not disqualify this child (or any other child) from joining a recipient pool to be considered for an available organ. It simply removed the age barrier that prevented this child from being included in that larger pool.

Once in the pool, it was up to whoever normally decides these things to determine where she fell in the rank of possible recipients, just like any other older child or adult who was new to the list would have been considered.

She wasn't even on the list. She isn't more important, but the system decided that kids don't count. Now kids count.

My limited understanding Cheryl, is that the girl did not go to the top of list, thereby passing up other waiting recipients. She was enabled to simply be placed on the recipient list. That was the reason for this ruling. She will still, like all the other recipients, need to be matched to a donor. Donor matching is the next most important step and that's where a lot of frustration for the waiting families resides. As they see organs come in and find matches for patients waiting less time, because it was a perfect match.

There's so much organ rejection in these cases, that requires life time support and monitoring.

As a parent, I would fight and argue against an arbitrary age mandated by medical experts. I would vote for individual, case by case decisions to be made.

The parents just wanted their child to have a chance at life. She was about to die eventhough she would be able to accept adult lungs.

Her parents fought like hell for their daughter and did everything possible to give her a chance to live. I admire them for that and would have done the same thing.

ETA: I thought about this again, and no I don't believe that she is more important than anyone else. However, I DO believe that she is more important to her parents. I can assure you that right or wrong, there is NO ONE in this world that I consider more important to me than my children.

The point is that it was only her age that was keeping off the top of the list. There were people far less sick than she was who were farther up the list then she was. The guidelines written about age restrictions were written based solely on the fact that they did not have enough data points in previous transplants to dictate the possible success of an adult to child transplant. And keeping to those guidelines would guarantee that there never would be.

This is not the first adult to child, as individual areas are allowed to interpret the guidelines as they see fit as long as that interpretation applies to everyone in that area.

I agree with littleEsmom, they wanted her on the adult list cause pediatric lungs don't come available enough. What's wrong with wanting to give their child a better chance? They didn't want her pushed ahead of anyone, she clearly was the sickest/best candidate at the time.

From what I heard of this story, I don't think this was a case of some being treated as "more important" or "jumping ahead in line."

The way I THINK it works is that until now there's been an adult waiting list for lungs and a children's waiting list for lungs. Only very few children's lungs are available for donation, so being a child in need of a lung transplant has been sort of a death sentence. That's particularly tragic and wrong because there are a lot of children with diseases like CF who would be particularly good candidates for transplants.

So I don't think it was a question of one person being valued above all others, it was a question of the medical rationale and the legal ethics of having age-segregated lists when adult-to-child transplants are perfectly viable.

I'm going to close with a clumsy, awkward analogy, but the story of Ruby Bridges, the little girl who desegregated the schools in Arkansas, that wasn't a case of a special exception being made for her. That was a case of putting an end to a terrible practice of injustice, with one brave little girl as the poster child. I know it's not a great analogy, but this does seem comparable to that in many ways.

My understanding is that transplant lists are mercurial. My friend got a live liver transplant. When that failed, he was put on the cadaver liver list, but he could not qualify for that til he was a certain level of sick. Once he reached that, he was ranked on need, and his ranking changed several times. He did eventually get the liver, but not til he almost died from battling infections (that left him ineligible for a while b/c he was so sick they didn't think he's survive the surgery and therefore was not a good candidate).

Sounds to me like they fought to get her on the adult list because she was capable of accepting adult lungs and she received them because based on overall criteria, she was next.

And it's not just her. An 11 yr old boy was also moved to the adult list. I see it as putting the kids where they might actually have a chance. Like how my friend first tried a live donor option and solicited donors from family and friends (my DH was one of three possible matches and had Friend's cousin not been a good match DH was next). I don't see it as skirting the rules. I see it as expanding the list of qualified applicants.

Wow..I'm sorry this post has me shaking my head.

Cheryl, you ask "Do you believe that this child with a chronic disease was more important than someone else?." NO,...not more important...but yes, anyone with a chronic disease wants a normal life...to be like everyone else. Do you have a clue what a child with Cystic Fibrosis goes through every day? It's definitely not a day like other kids. Do you realize the amount of medication that they take every day of their life? CF kids/adults typically must swallow enzyme pills EVERY time they eat, just to digest the food. They put up with being pounded on numerous times a day...to break up the thick mucous in their lungs. Do you know of the times they go to the hospital, not because they are necessarily sick, but for what is called "a tune-up"..intense therapies over and above what they do DAILY. This child you speak of in this post is a little girl fighting for her life. And I think these parents did what any of us would...they did whatever it took to give their daughter a chance at a more normal life.

She's 10. It was my understanding that were she to be 12, she would have been the next up due to the seriousness of her condition. She was near death and not being considered at all because she is only 10 years old-not that she wasn't sick enough. The adult lungs were altered a bit to fit her body-I hope she makes it! Every child is important and deserves a chance to live a healthy, happy life-the question is, are we worthy enough to have them?

The move did not make her more important or put her first on the list, it simply put her on the list and may give her a chance at life, the same thing everyone on the list is hoping for. The reason for wanting to get her on the adult list is simple, she is more likely to find a match with a larger pool of donors, and more adults die then children, and more adults are organ donors. It doesn't make her more important, just equally as important.

"For us, this means that for the next 10 days, Sarah's placement in the queue for adult lungs will be based on the severity of her illness, and she will not be penalized for her age," parents Janet and Francis Murnaghan said in a statement. That is what the parents were fighting for.

I was so happy they found a match and I pray that she makes it!!! I just can't imagine what they were going through, knowing that the chances of their child receiving a transplant would be MUCH higher if someone would just sign a form authorizing her to changed to the adult list. I would feel so completely desperate. There is nothing more important in this world than my family!

I was relieved when a judge intervened in this case and forced Sebelius to allow her to be on the adult list. She could have intervened and chose not to. With all the targeting going on, it makes one wonder if the parents' voting records were checked before they were turned down! I am not kidding!

What makes anyone on the waiting list more deserving than anyone else?
I would guess that any parents in the shoes of those parents would want the same thing--for their child to be placed on the waiting list--fair & square.
I find this an odd question and I would find it odd to find anyone who would agree that kids need to wait longer--regardless of the stage if their sickness.

ETA: Nowhere, except this post, not even in the article you linked, do I see the words "more important."

I haven't really followed this story, but I did see the basics. In my opinion, if a particular child's body is mature enough to accept an adult lung, they should be placed on the adult list without their actual age mattering. It should be a case by case basis. You may have a 9 year old whose body is more mature than a 13 year old. So maybe the 9 year old would be accepted but the 13 year old wouldn't. There shouldn't be a blanket cut off age, since it seems that the child's body needs to be able to accept an adult size lung. So it should be the doctor's determination on a case by case basis.

Once on the adult list, the child should be treated like an adult. Their placement will depend on the severity of their sickness and whatever other factors are used to rank them. They, like adults, should be placed by need and not by age.

I also think they should be allowed to remain on the pediatric list, in case the match comes up there sooner. It shouldn't have to be a choice of one or the other (don't know if that's what happened here or if she did get to remain on both lists).

I guess my point is, if the doctor thinks that the particular child has an equal chance as an adult of a successful transplant, without a higher likelihood of rejecting the organ, they should be included on the adult list.

I pondered this issue myself. For me it comes down to this: if this were my child, I would do anything I could to get her on the list, regardless of what was fair. And that's just what her parents did, and they succeeded.

A judge should not be deciding who goes on what list. There is a pediatric and adult list for a reason. Child who gets adults lungs: 20% chance of success. Adult receiving adult lungs 85% chance of success. Enough said. Sara is still in critical,condition on a vent nine days later. Should have been off the vent within 48 hours and up an about. She had a family who went to the media therefore she won a transplant. However, if she does not survive a set of lungs were wasted. Even with a transplant, life e pectancy is only five years tops because she is not cured. Now what about the adult that needed a lung transplant without a chronic condition, he would probably live a long long time. Very complicated issue. I Think it was very wrong for the judge to make the decision. Who made the judge God. The system has worked as best it could before this. This will open pandora s box.

I am trying to look at this objectively. Sure if it was my child, not sure what I would do. What upset me, was parent or aunt saying yay lungs, common lungs, we need lungs. Something like that. For those lungs to be available someone must die. To outwardly root for lungs was wrong.

I understand and agree with you. However, while this family was fighting for their child, they were also advocating for others like her.

Forcing an older child to wait for a "child's" lung when their body could accept an "adult" lung is often forcing them to a unnecessary wait or possibly, like in her case, a death sentence. They were fighting for their child's life and in turn, that of other children. They asked for and got, at least for their child, to be put on the adult list so they could be evaluated (on the same criteria) as the others on that list. If someone else had been worse off than her, they would have gotten the transplant instead.

It doesn't mean she was more important but rather that she was higher on the need list/criteria.

Did they bump someone & move her to the top of the list? Or did the ruling just allow her to be ON the adult list? I believe they place people on the list by a case by case basis, I could be wrong! I don't know, I am not up on all the ends & outs of all of this?!

I like that she got to be on the adult list.

I can't even imagine if this was my child. I would be fighting tooth & nail as well!

This was a sad case. I definitely see both sides. I know that organ donor rules are in place for a reason and up until now they did not allow adult lungs to go to children because there is a greater chance of them not working out, size-wise. Then a perfectly good set of lungs that could have gone to a more-appropriately sized body are useless. I hate when the govt. gets involved in this sort of thing. Like I hated when Bush tried to stop that one W.'s husband (or was it parents? don't remember) who was brain-dead from taking her off life-support.

That being said, if this were my daughter I'd be fighting tooth and nail to save her life. Absolutely. But I really think we must let the medical professionals, who are the experts here, do their job and create sound policy based on medical science and knowledge.

Exactly as LittleE'sMom said, you go to the "Top of the List" by being the sickest person, the person most likely to die the soonest without a transplant. When an organ becomes available they start at the top of the list to see who this organ will match. The length of time on the list doesn't really matter. (Unless you are a millionare, and that's a whole different argument!)

M

I have a friend with CF. In fact, he has already surpassed the median life expectancy. He struggles every day, and is being denied for disability. (!!!!!)
I think everyone should be on the list, including that little girl. However, I do NOT think she should have received lungs over someone else who has been waiting, who was a match. That is WRONG. In every way. The lungs do NOT always go to the sickest person. Knowing someone who is on that list...I can say that for sure.

From I understand, the "rule" is that children could only be on a child list. So you had to wait for a child to die first. That gives fewer options for those children on waiting lists. I think the fight itself was not about pushing her to the top of the adult list but just having her on the same list since she could accept the same lungs as the adults. I personally am glad they won the fight and this opens up a discussion about changes. Though I do not think someone that just entered a list should be placed at the top.

She is no more special than an adult. AND the long term outlook for lung transplant is dismal. She will still likely die within a decade. While an adult who had received the lung might very well have lived out his or her natural life span (or close to it) and been able to 'finish' a well lived life. I think the court's decision was wrong. The lung should go to the sickest person most likely to have a successful transplant. And pediatric patients are less likely to have a successful transplant of adult lung than an adult patient. In fact difference in size between donor and recipient is even important between adult donor and recipient when both are adults.

I am sorry she has CF. It is an almost completely predictable and preventable disease. We would be much better off as a society to prevent CF than to use the few lungs available as treatment - especially given the poor outcome even with surgery. And of course we should all be organ donors - it is a very easy thing.

By being put on the adult list there are more opportunities for her to find the lungs so she can LIVE. Cystic Fibrosis could easily take her life tomorrow or before she gets lungs, just like any other adult on the list.

My understanding is that people are put on the list and pushed up based on compatibility with the organ and severity of their current condition. You can be #20 on the list today and #1 one a lung is available due to circumstances. If she can handle an adult lung why should she not have a chance on both lists if she meets the requirements?

I think that when it's OUR children who are at stake, then we have a right to question it. Otherwise, it's not our place to ask what makes her "special". I second Rosemud.

Did she just get on the list, or did she go to the top of the list? If she just got on the list, then there is no implication that anyone thought she was more important than anyone else. But if she moved to the top of the list, then I would need more information in order to respond. Seems to me that there must have been a reason(s) why they would put her at the top.

What's interesting to me is how I would feel if I were on the list and not the mother of young children. To me there is nothing more heartbreaking than a child dying or a child losing a parent. It just should never happen to anyone. So if I didn't have young kids and was on the list, would I step aside?... Hopefully I'll never know but it is almost tempting to say a 9 year old should get a chance before a middle aged or older person who doesn't have children to care for and depending on them... I don't think that's what happened here so just hypothetical and am impossible question to answer anyway. But it does make me wonder what I'd do.

Do you really not understand? People, especially children, that are in immediate and dire need have higher priority.

Hospitals have to tell people on the waiting lists that a particular organ from a particular (and anonymous) donor they were waiting for fell through all the time. They're told that a more urgent need came up, and they're not necessarily expected to be understanding. But the fact is that the people on the waiting list did follow the rules... so did the hospital... and so did the family of that little girl. All the court ruling did was square up the playing field for this child by allowing her to get on an additional waiting list. It didn't move her up the line. It didn't take an organ away from someone else in need.

I do NOT believe it will "open up a can of worms."

Sometimes what's right isn't what is fair.

Children take priority on the adults list.
She was the most dire need child eligible for the adults list.