Pa. girl's parents challenge lung donor rule

New Posts

Reader

Reader

New Member
Joined
Jan 26, 2004
Messages
7,033
Reaction score
93
http://news.yahoo.com/pa-girls-parents-challenge-lung-donor-rule-210112270.html

PHILADELPHIA (AP) — The parents of a 10-year-old Pennsylvania girl who has been waiting for a lung transplant for a year and a half are calling for a change in the policy governing organ transplants that they say has prevented their increasingly sick daughter from getting life-saving surgery.

Sarah Murnaghan of Newtown Square has end-stage cystic fibrosis and has been unable to leave Children's Hospital of Philadelphia for three months, needing a ventilator to breathe, according to an online petition that had drawn more than 17,000 supporters by Monday. Her mother, Janet, said her daughter has only a matter of weeks to live.

Janet Murnaghan said Sarah has been awaiting a transplant from a pediatric donor and is also eligible for a lung from an adult donor. 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. Sarah is a top priority on the pediatric list, but officials say there are far fewer pediatric donors due to improved treatment..........

"We don't want preferential treatment for Sarah, we want equal treatment," Janet Murnaghan said Sunday. "We want it to be a triage system like they do for everyone else where the sickest patient goes first and ones with ability to wait, wait."........


More at link......
 
An organ has to fit into the recipient. Unless the adult is very small, lungs might not fit into the child.
So maybe there is a reason for that rule?
 
Unfortunately, I think wherever the organ has the best chance of maintaining function is where the organ should go.

If at this point she would have more success with a child's lung, then she would need to wait for one to become available.


When I used to work in a pediatric specialty clinic, there was an older teen who had a liver transplant, but she had behavior problems too and wouldn't take her anti-rejection medication for periods of time.

They gave her THREE livers. THREE. And she lost all 3 and died because again she would not take her medication.

Two other adults lost their chance at those organs. I remember there being a huge dustup between all the specialties because most felt it was a waste of organs and others felt a rebellious young person should receive the organ over a compliant older person.
 
jjenny said:
An organ has to fit into the recipient. Unless the adult is very small, lungs might not fit into the child.
So maybe there is a reason for that rule?
Click to expand...

This is the EXACT reason for the rule. The parents - while obviously wanting their daughter to get the lungs - are not being reasonable. And in taking this case to the media, without ALL the facts, make the healthcare institution look like the demon here. Which benefits no one. You cannot put adult sized lungs into a 10 year old. Kidneys? Yes. Liver segments? Yes. Lungs? No.

She is at the top of the pediatric list. The person at the top of the adult list is no less needy. There are two lists for a reason.
 
Here is the doctor's statement in the article and he has several reasons but none mention the size of the lung:

Dr. Stuart Sweet, director of the pediatric lung transplant program at Washington University School of Medicine in St. Louis, who helped draw up the pediatric lung allocation guidelines, said a prioritization system wasn't set up for children younger than 12 because of a lack of data to set up proper statistical models, and an "apples-to-apples" comparison of relative illness between the two groups wasn't possible.

"Each time we direct a set of organs to a given patient, because there's a limited supply, that reduces the likelihood that another patient will get that organ and survive to transplant," he said.

While those advocating on behalf of younger donors fear that adult candidate may receive an organ despite being less sick, "there's no way to really answer that question," and the number of adults who die waiting for a transplant vastly outnumber the number of children who do, Sweet said.

"The reality is ... the numbers suggest that there's lots of patients who are running out of time on the waiting list and many more patients run out of time ... in the older age group than the younger group," he said.

Janet Murnaghan and her sister, Sharon Ruddock, said that although fewer children were dying while awaiting transplants, the number represented a much higher proportion relative to the number on the waiting list.

"They're allowing children to die at a far greater rate than adults," Janet Murnaghan said. "The system is set up is to prefer adults, and the data supports that."

Sweet said officials recently changed the pediatric system to give sicker children higher priorities for transplants and also cast a wider net for suitable candidates, searching beyond existing donor regions to an area 1,000 miles from a donor hospital for a suitable candidate before moving on to adolescent or adult candidates.

"The policy is designed to be fair to everyone, and we can't make exceptions on a case-by-case basis beyond the exceptions that are built into the policy to cover circumstances where the patient's not being served well," Sweet said.

However, he said it would be possible for an appeal to be made directly to an adult transplant center, and the Murnaghans said such appeals had begun Friday on behalf of Sarah.
Click to expand...
 
I did find a medical source that mentions the size of the lung for a child so those that mentioned that requirement are correct:

http://www.childrenshospital.org/az/Site1250/mainpageS1250P1.html

How are donor organs distributed?

UNOS keeps a list of all the people in the United States who need a solid organ transplant. In the case of lung transplants, people over age 12 are given an allocation score based on how urgently they need a transplant and the severity of their condition.

Those who would benefit most are placed highest on the list, and given first priority when a donor organ becomes available. For children under age 12, lungs are allocated based only on the time they’ve spent on the waiting list.

When donor lungs becomes available:

1. A computer searches all the people on the waiting list and creates a smaller list of people for whom the lungs would be the appropriate size and blood type.
2. The computer ranks the people on that smaller list according to their allocation scores.
3. The person at the top is considered first for the transplant. If he is not a good candidate, the next person on the list is considered, and so forth.

When the decision is made to put your child on the transplant list, his transplant team will send his medical profile to UNOS, and keep them updated them as his condition changes.

Much more on subject at link.....
 
"Children younger than 12, however, do not receive LAS scores and are not part of that allocation system, Sweet said. Under the rules, they’re classified according to two categories of illness, priority one being the sickest. Kids are offered organs from donors of similar size and age before those organs are offered to older patients. That’s because children have different biological needs than teens and adults, and issues such as size and lung capacity have to be considered, Sweet said."

http://vitals.nbcnews.com/_news/201...-10-spurs-fight-over-lung-transplant-fairness
 
Review of U.S. lung transplant policy unlikely to save girl's life

http://www.cnn.com/2013/05/31/health/pennsylvania-girl-lungs/?iref=obnetwork

United Network for Organ Sharing, a nonprofit that manages the nation's transplant system under federal contract, agreed to the review Friday, the same day that an urgent request was made by U.S. Health and Human Services Secretary Kathleen Sebelius, UNOS spokeswoman Anne Paschke said.

But because the review process involves research and public comment and because there's not enough organ donations for children, the nation's transplant system won't likely be able to save the life of Sarah Murnaghan, who could die within weeks without a transplant of lungs.

When pressed on this emerging reality, Paschke stated: "I don't have anything additional to add."...........

But doctors say modified adult lungs could help save her -- and adult lungs become available much more often.

That's where the rules becomes a problem.

Children under age 12 aren't prioritized for adult organs. So Sarah could only get available adult lungs if everyone else waiting for lungs in her region -- no matter how sick they are -- turns them down........

More at link.....
 
I suspect we are sliding toward allocating organs based on which patient has the best lawyer. We are having an active debate on this topic on an internet nursing forum right now.
 
Sounds like that if she were to get adults lungs, they would have to be cut down in order to fit her.
Which is likely not the best solution, but her parents are obviously desperate at this point.
 
I'm really not understanding why children are treated differently...why can't it just be based on who is the sickest and needs the transplant the most at the time, whether adult or child?
 
Reader said:
I'm really not understanding why children are treated differently...why can't it just be based on who is the sickest and needs the transplant the most at the time, whether adult or child?
Click to expand...

The adult organs don't fit the child. And therefore, the adult would presumably have the best chance of surviving the transplant and living with the transplanted lungs. I presume the goal of this policy is to increase the chances of success.
 
You cannot put adult lungs into a ten-year-old's chest. They physically will not fit. And in 'cutting them down to size' you risk irrevocably damaging the lungs which would have fit the adult without adaptation.

The person at the top of the adult list is as sick or sicker than the person at the top of the pediatric list.
 
I got that from our previous discussion but I mean since this doctor said adult lungs might be modified to fit her, IF they found lungs that would fit or could be modified, she still under these rules would not even be up for consideration. I think she should be eligible to at least be considered, as any adult is, and the one in most need and sickest at that point in time, get the transplant. I think that is what her parents are saying. If there is an adult more desperate or closer to death, they would get it. All strictly decided by medical necessity at the time the lung is available, and if it would fit her or could be modified. Maybe she could take one from a small woman, for instance...
 
By modifying, I presume the doctor means cut down to size. Which obviously means they won't work as well.
You can give lungs to adult, without having cut them down, or to a child.
If you have to cut them down, you decrease chances of success.
 
I pray somehow lungs will become available for this little girl. Imo
 
Her mother, Janet Murnaghan, said the family is thrilled by the ruling, which is in effect until a June 14 court hearing.
Click to expand...

So she is only eligible to get adult lungs for the next 9 days?
 
eileenhawkeye said:
So she is only eligible to get adult lungs for the next 9 days?
Click to expand...

The article has been updated now:

U.S. District Judge Michael Baylson suspended an age factor in the nation's transplant rules for 10 days for Sarah Murnaghan because of the severity of her condition.

The girl's family believes that is enough time to find a match. Sarah has been hospitalized at Children's Hospital of Philadelphia for three months with end-stage cystic fibrosis.........

Baylson's order applies only to Sarah, at least until the scheduled June 14 hearing, when the family will push for a broad injunction on the age limit......more.....
 
You must log in or register to reply here.

DNASolves

Who is Escambia County John Doe (1989)?

Members online

... and 63 more.
Total: 3,914 (members: 64, guests: 3,850)

Online statistics

Members online
64
Guests online
3,850
Total visitors
3,914
Totals may include hidden visitors.

Forum statistics

Threads
591,663
Messages
17,957,235
Members
228,583
Latest member
Vjeanine
Back
Top