Sarah Murnaghan has cystic fibrosis and needs new lungs to save her life.

[ArielRae]

Young girl in Philadelphia needs your help. Local news trying to get the word out about her situation. They are tweeting the president and other famous people. They are trying to get people to retweet - 10yo needs lungs to live! Learn Sarah's name to save her life. Please RT#Sign4Sarah

Here are a couple links to help and follow along.

Her story with link to petition
http://www.myfoxphilly.com/story/22484161/sarahs-fight-captures-attention-washington

Link to news videos
http://www.myfoxphilly.com/category/265185/sarah-murnaghans-fight-for-lung-transplant

The news station is asking if you or someone you know who has unfortunately has a young child pass away please think of this young girl and donate your child's organs if not to her to at least help some other child in need but If you can donate their lungs to her as it will override her being on the wait list and will go straight to her.

 

[Tiggeroo]

What they'd really like is for her to eligible to be placed ahead of adults who are less needy on the list. All over the news and heartbreaking to see her parents.

 

[sharbear]

As tragic and heartbreaking as this situation is, every single person on an organ donation list is as tragic and heartbreaking to that family. The organ donation registry has protocol in place for a reason. So that every organ donation is a success for the recipient.

 

[ArielRae]

Yes

I figured it wouldn't hurt to get our Disney community involved cause we are so great at getting things done or at least moving for those in need. For example all the money being raised for give kids the world.

 

[Acklander]

As tragic and heartbreaking as this situation is, every single person on an organ donation list is as tragic and heartbreaking to that family. The organ donation registry has protocol in place for a reason. So that every organ donation is a success for the recipient.

I agree with this. It would be devastating to the system in place to bump someone up the list because they tweeted the president and famous people. I feel terrible for them, and hope their campaign shines a spot light on the importance of being an organ donor, but they shouldn't be allowed to cut in line. There's a protocol in place.

 

[ArielRae]

Ok they just said on the news that they have been getting the question about where on the list she is and they are saying she is first on the list to get a lung but it has been over 18months and no lungs are avaliable. They would like for her to get an adult lung but her age keeps her from getting one unless someone donates it to her. So not only if you know a child that has passed but also an adult you can donate a lung to her.

 

[ArielRae]

They are constantly running updates thru out the news cast. About who they want people to tweet and answering people's questions.

Wish I could keep everyone more up to date but I have to start my day. Just keep checking their website I'm sure they will keep everyone posted.

 

[kwelch10377]

I agree with this. It would be devastating to the system in place to bump someone up the list because they tweeted the president and famous people. I feel terrible for them, and hope their campaign shines a spot light on the importance of being an organ donor, but they shouldn't be allowed to cut in line. There's a protocol in place.

They aren't looking to cut in line. She is at the top of the list, however keeps getting pushed down because the lungs that become available are those of an adult and based on the current guidelines she can only get lungs from an adult if she were at least 12.

 

[crashbb]

The news station is asking if you or someone you know who has unfortunately has a young child pass away please think of this young girl and donate your child's organs if not to her to at least help some other child in need but If you can donate their lungs to her as it will override her being on the wait list and will go straight to her.

I have to admit that this really doesn't sit well with me. I fully support changing things so that she could get a suitable adult set of lungs (assuming that no adult would be above her on the list), but I have issues with the idea that, because her parents are media savvy, she should "override the list". My graduate work was in CF and, unfortunately, I do know people on the waiting list for lungs, so I am definitely for increasing awareness of organ donation - I am just not for line jumping (which is what the part I bolded is trying to do). I do hope that lungs come for Sarah and the many people on the waiting list (for lungs and other organs).

 

[GigglyFigment]

I have to admit that this really doesn't sit well with me. I fully support changing things so that she could get a suitable adult set of lungs (assuming that no adult would be above her on the list), but I have issues with the idea that, because her parents are media savvy, she should "override the list". My graduate work was in CF and, unfortunately, I do know people on the waiting list for lungs, so I am definitely for increasing awareness of organ donation - I am just not for line jumping (which is what the part I bolded is trying to do). I do hope that lungs come for Sarah and the many people on the waiting list (for lungs and other organs).

There are two organ donation lists - one for adults and another for children. She's at the top of the list for children but in order for a child to be eligible for adult lungs, they have to go through all the adults first. Since there are far more adult organ donors, children end up waiting - sometimes far longer - than adults even if they are more seriously ill. It's a system that needs to be changed.

However, I think her parents would do better to inform people about the lack of child donors and get parents on board with donating their children's organs should the worst happen. The reality is that they may not be able to save Sarah, but they could do a heck of a lot of good for lots of other children.

 

[robinb]

Can the doctors adjust adult lungs to fit a child?

 

[crashbb]

There are two organ donation lists - one for adults and another for children. She's at the top of the list for children but in order for a child to be eligible for adult lungs, they have to go through all the adults first. Since there are far more adult organ donors, children end up waiting - sometimes far longer - than adults even if they are more seriously ill. It's a system that needs to be changed.

However, I think her parents would do better to inform people about the lack of child donors and get parents on board with donating their children's organs should the worst happen. The reality is that they may not be able to save Sarah, but they could do a heck of a lot of good for lots of other children.

I don't disagree with anything you posted.

The part of the OP that I quoted specifically talked about the donation of a child's lungs, not an adult's lungs and having it go directly to Sarah so she could jump the queue. I always thought that the lists were state (or region specific) - I'm in Canada, so I'm not that familiar with the US system, but I remember accusations against some rich American (don't remember who) that he was essentially queue jumping because, with his ease of travel (private jet) he could be one more than one list (and still get to the relevant area should an organ come available). So, with that in mind, I thought the parents were trying to get lungs that might be (based on region) set to go to another child on another list. If there is only one list and Sarah is on the top of it, I don't get the request at all.

Actually, I didn't realise that, in the US, you could do directed donations of cadaverous organs in the first place.

 

[worm761]

Can the doctors adjust adult lungs to fit a child?

This was my thought too. I have seen the articles. I assume the age is 12 for adult organs for a reason and that the doctors know best. I assume that a 10 year old's chest is not large enough to house an adult set of lungs without crushing her other organs.

 

[kwelch10377]

This was my thought too. I have seen the articles. I assume the age is 12 for adult organs for a reason and that the doctors know best. I assume that a 10 year old's chest is not large enough to house an adult set of lungs without crushing her other organs.

It doesn't seem like that is an issue here. I don't believe her doctors would have supported the family asking for the guidelines to be changed or asking the public for help in having lungs designated to Sarah for donation if they weren't able to do the transplant with adult lungs.

 

[sharbear]

I was also unaware that you could designate organs to a specific person, although people do with kidneys, you can donate a kidney to a person. Let me say that there are not enough organs available for all those who need them and many die every year waiting on an organ transplant.

I felt compelled to come back here and explain a bit about organ donation. I do not have knowledge about lungs so it may be a bit different. Also the person that crashb was talking about is Steve Jobs. He needed a liver transplant and was on several donation lists. I think that any person can be on multiple lists but they do need to be at the hospital within a certain number of hours.

Anyways, the person I know who is a organ recipient has a new heart. To be on the organ donation list, you have to be very sick. There are no other treatments available to you and that is for everyone. It has to be a person similar in size, their blood has to be compatible. Also the person has to die in a very specific way, and their family has to agree to donate their organs. The donor and the recipient have to have compatible antibodies, (this I don't know much about but from my understanding this can be tricky especially if the recipient has had multiple blood transfusions).

The person who died has to be free from cancer and some other diseases (i.e. hepatitis). There are many reasons people who die will be precluded from donating. There are also regions where organs can be donated from. Which is why you can be on multiple list. For instance if you live in Philadelphia your organ will come from somewhere in that area because the transplant has to be done within a certain amount of time once the person who dies is taken off life support.

Now here is a tricky part also. You can be at the top of the organ donation list. But sometimes there will be someone who becomes sicker and is put on the top of the donation list. This does happen.

Now I feel very sorry for this mother. I feel very sorry for everyone on a organ donation list. It is very, very heartbreaking. But I also feel compassion and am very thankful for all those who work with organ donations. They deal with people who are desperate for a new organ every day and sometimes they get those organs and sometimes they don't. It is very heartbreaking.

You just can not make a judgement based on emotions. My relative who received a new heart has young children. He will be able to see his children graduate. He will be able to dance at his children's weddings. He will be able to see his grandchildren, god willing. It's very hard to say who is more deserving, because everyone is deserving.

Ok, now I will step off my soapbox. Everyone should be a organ donor, not everyone can, but if you can, there are so many lives you can save. It's a wonderful thing.

 

[AddictedtoDoleWhip]

Can the doctors adjust adult lungs to fit a child?

Probably, but it's a lot of work.

For example, an adult who needs a lung transplant would not be able to get donated organs from a child because it would not be able to support them. I know that they have to try to get a closest match possible for lungs, so depending on how tall she is she may not be able to get adult sized lungs because it will be much to big for her body and they may be to strong for her body to handle on top of that.

 

[Hoodie]

Can the doctors adjust adult lungs to fit a child?

Yes, they can. It's more difficult but can be done.

This is a situation where the rules and regulations haven't caught up with medical advances. When the rules were created, size was an issue. That's why the cut off was 12 - most kids over 12 could tolerate adult sized lungs. That has changed though and now they can transplant larger lungs into smaller bodies.

The issue isn't "jumping the line." She's at the top of the pediatric list. If she was 12 instead of 10, she'd be at the top of the adult list. Her doctors have said they could use adult lungs...if she was eligible via the transplant rules. It's strictly bureaucracy taht keeps her from getting them.

 

[BellePrincessBelle]

Yes, they can. It's more difficult but can be done.

This is a situation where the rules and regulations haven't caught up with medical advances. When the rules were created, size was an issue. That's why the cut off was 12 - most kids over 12 could tolerate adult sized lungs. That has changed though and now they can transplant larger lungs into smaller bodies.

The issue isn't "jumping the line." She's at the top of the pediatric list. If she was 12 instead of 10, she'd be at the top of the adult list. Her doctors have said they could use adult lungs...if she was eligible via the transplant rules. It's strictly bureaucracy taht keeps her from getting them.

Has that been shown? Would she really be the next on the adult list if she were an adult? My understanding is that she is on the top of the pedi list but that does not equate to her being on the top of the adult list, if she qualified to be on that list. There may be an adult that is higher than her.
Her family has my sympathy, watching a child die is horrific, but the guidelines must be followed.

 

[robinb]

Thanks everyone for answering my question! I really wasn't sure if she could even be fitted with an adult pair of lungs.

I am having a bit of a hard time understanding that there wasn't a single pair of pediatric lungs that would work for her in the last 18 months. At the very least this poor girl has highlighted the need to pediatric organ donation.

ETA: I wonder if she needs a pair of lungs from a child under 12 too? Is 12 considered "adult" for the donator too?

 

[nhpooh]

As tragic and heartbreaking as this situation is, every single person on an organ donation list is as tragic and heartbreaking to that family. The organ donation registry has protocol in place for a reason. So that every organ donation is a success for the recipient.

Sorry about this and that it's happening, but I lost my DD 12years ago to this very thing. She was on the list and just didn't make it. No matter what we did it didn't help, the list is a list for a reason. She too had Cystic Fibrosis.

We all have to wait our turn some make it and some don't. I sure hope she does but as stated there are other people out there waiting too!