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

[Shea&Van]

nhpooh -- So sorry for your loss.

CF has affected our family as well and it breaks my heart reading about this case. I pray always for all the children who have to deal with chronic health conditions such as CF. Such a cruel disease...

This coverage has definitely shined a spotlight on the importance of organ donation and for that I am grateful.

Hug your little ones a little tighter this evening.

Blessings to all!

 

[roomthreeseventeen]

At the very least this poor girl has highlighted the need to pediatric organ donation.

Exactly this.

 

[worm761]

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

This is fascinating to me (the medical aspect, not the poor child) so I have another question...Will the lungs then grow with the child? Or will the child need another set of lungs when fully grown? Also, can this be done with other organs too?

 

[pigletgirl]

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!

Right. Everyday people die waiting for organs. CF is a nasty disease but my question is (and I may be stirring the pot) what makes her situation more special than anyone else???? I'm sure there are other children waiting today for a set of lungs. That being said, I hope Sarah does find a healthy set of lungs and she can live on to be a somewhat productive adult.

 

[roomthreeseventeen]

Right. Everyday people die waiting for organs. CF is a nasty disease but my question is (and I may be stirring the pot) what makes her situation more special than anyone else???? I'm sure there are other children waiting today for a set of lungs. That being said, I hope Sarah does find a healthy set of lungs and she can live on to be a somewhat productive adult.

No, that’s true. Nobody waiting for lungs should have their particular illness used against them or for them.

 

[kwelch10377]

Right. Everyday people die waiting for organs. CF is a nasty disease but my question is (and I may be stirring the pot) what makes her situation more special than anyone else???? I'm sure there are other children waiting today for a set of lungs. That being said, I hope Sarah does find a healthy set of lungs and she can live on to be a somewhat productive adult.

They aren't looking for her to situation to be a one time only bending of the rules, they are using her situation to show an example of the potential need to change the guidelines for everyone. Obviously they are looking for a swift change so Sarah can benefit from it.

They aren't looking to circumvent the system, but change it. They also aren't asking to be moved up the list because she is aready at the top of the children's list and would be at the top of the adult's list if she were allowed to receive an adults lungs.

 

[Hoodie]

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.

From what I was reading, yes, whatever "score" they use would pet her at the top of the adult list too.

However, there are other factors than scoring for transplants. Compability being the biggest. There could be an adult donor tomorrow, but if the compatibility factors don't match Sarah, she wouldn't get them. If they were too far away, she wouldn't get them. Being at the top doesn't mean you are really next in line.

 

[StitchesGr8Fan]

So what is the point of the original post, to get people to donate their child's organs? Or to get people to push for a legislation change?

 

[Tinker'n'Fun]

It took almost everything I have in my heart to post here. My father received a heart transplant. Simplifying the process and working the heartstrings of parents really upsets me as does this thread.

I understand the pain the parents are going through. It is just not that simple. The media is making a huge mistake here. Just in case anyone wants to know if a parent loses a child and decides to donate their lungs to just this child the chance of a match is very slim. How terrible would you feel as the parent donating to find out that the lungs were not compatible and that you may have now missed the window to donate those lungs to another child who needs them.

The lists and guidelines exist for a reason. IF the medical community truly believes a child should be able to be on both lists they should be working towards new guidelines instead of playing with the emotions of so many people.

I feel this is extremely cruel to the families who are on donations lists and must grieve and know the organs are being donated to ask them to choose one person over another. I truly believe the system is set up to make it work for the masses instead of the few.

My father as most of our family have a very rare blood type. If anyone (and yes including my father) needed a transplant we can only accept an organ from someone of that blood type, not even the universal O can be used on us. So the statistics show that we would be on and stay on the top of the list most likely to death. My father was extremely lucky to receive his heart. He was not on the top of "the" list, but definitely was on the "top" of our blood type list. No one in the whole country was on his list.

This is not a cut and dry situation. The more knowledge you have the better educated you can be when you see news stories etc.

I want to finish here by thanking the family who donated the organs of their child (a young adult but still a child to his parents) when he died unexpectedly. That is all we know of the family. They gave out of love and worked within the guidelines of the system. They gave my children memories of a great grandfather (he passed 10 years after the transplant which was longer than the doctors expected). Every system can be made better by working within the guidelines but cases like this in my opinion only alienate many to actually shy away.

God Bless her family. I hope a match is found and if not that they find peace in their lives.

 

[nhpooh]

nhpooh -- So sorry for your loss.

CF has affected our family as well and it breaks my heart reading about this case. I pray always for all the children who have to deal with chronic health conditions such as CF. Such a cruel disease...

This coverage has definitely shined a spotlight on the importance of organ donation and for that I am grateful.

Hug your little ones a little tighter this evening.

Blessings to all!

Thank you very much for your kind words

I pray for a cure real soon so we don't have to hear or go thru things like this!

 

[sharbear]

Tinker n' Fun, I also have a close relative who had a heart transplant. I also feel very strongly about this situation. I tried earlier to try and explain the process and how hard it is to match people for an organ transplant.

The people who work the donor registry have a very hard, impossible job. I understand wanting to raise awareness of organ donation. But asking someone to donate their child's organs to one person does not help this very hard process. But I have sympathy for this mother as I have witnessed the anguish someone goes through on a list.

 

[Tinker'n'Fun]

Tinker n' Fun, I also have a close relative who had a heart transplant. I also feel very strongly about this situation. I tried earlier to try and explain the process and how hard it is to match people for an organ transplant.

The people who work the donor registry have a very hard, impossible job. I understand wanting to raise awareness of organ donation. But asking someone to donate their child's organs to one person does not help this very hard process. But I have sympathy for this mother as I have witnessed the anguish someone goes through on a list.

You and I feel very similar re: the situation and I find comfort in this. I also feel for the mother of the child. My only concern is that articles like this can backfire and cause someone who may have donated to hesitate. That is where I have a problem.

 

[Octoberbride03]

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.

No adults are higher than her. She's been at the top of the list for at least 2 weeks. 2 weeks ago was when i first heard about her and signed the petition. she is from my home county in PA. And i just read an update that Sebelius refused to sign an exception for her while the review goes on.

 

[castleview]

A federal judge just ruled she could be put on the adult list. It's very scary that media exposure, political influence and a judge can overrule stipulations set in place by medical doctors who have experience in transplants and understand the chances and complications of the surgery.

 

[castleview]

No adults are higher than her. She's been at the top of the list for at least 2 weeks. 2 weeks ago was when i first heard about her and signed the petition. she is from my home county in PA. And i just read an update that Sebelius refused to sign an exception for her while the review goes on.

Why is this girl's need for an exception greater than anyone else on that list?

 

[minkydog]

Why is this girl's need for an exception greater than anyone else on that list?

Could it be that she's at the top of the children's list and she would be at the top of the adults list, if she were 12?

 

[happygirl]

A federal judge just ruled she could be put on the adult list. It's very scary that media exposure, political influence and a judge can overrule stipulations set in place by medical doctors who have experience in transplants and understand the chances and complications of the surgery.

I 100% with the bold part

 

[AverageDiser]

A federal judge just ruled she could be put on the adult list. It's very scary that media exposure, political influence and a judge can overrule stipulations set in place by medical doctors who have experience in transplants and understand the chances and complications of the surgery.

Why is this girl's need for an exception greater than anyone else on that list?

I 100% with the bold part

It was mentioned several times within the thread, and in the article, that the regulations in place preventing her from receiving adult lungs was put into place *before* a child-adult transplant could be done successfully. This is no longer an issue, and hopefully will be the first step in getting that rule changed.

 

[castleview]

It was mentioned several times within the thread, and in the article, that the regulations in place preventing her from receiving adult lungs was put into place *before* a child-adult transplant could be done successfully. This is no longer an issue, and hopefully will be the first step in getting that rule changed.

The chances of success are still low. I'd hate to see a 15 yr. with a better chance of survival die because he/she got bumped.

 

[AverageDiser]

The chances of success are still low. I'd hate to see a 15 yr. with a better chance of survival die because he/she got bumped.

The chance of success is on par with any other lung transplant. An adult donor would still have to be the appropriate size, blood type, etc. Further, since this is new territory, there are no statistics, hundreds of similar transplants would have to be done to develop a reliable data pool. Another way to look at it...with the regulation still in place, the 15 year old (if they were put in second after Sarah) would likely still receive lungs faster than Sarah would have had she not been allowed on the adult list.