Pa. girl's parents challenge lung donor rule

[Elphaba]

Baby girl is fighting a huge battle...

 

[BuzzieCat]

http://www.cbsnews.com/8301-204_162...ransplant-recipient-has-aspiration-pneumonia/

"Bottom line: Did she likely take organs from others? Most likely no. The ones she got are likely to be marginal and she is not living at someone else's expense. But now has she been put through some really experimental efforts, because we don't know much about pediatric lung transplants and chopping lungs to a smaller size," he [Arthur Caplan] said.

 

[gitana1]

She did get new lungs. But she still has the same defective gene for the rest of her body. We are also not talking about her being cured and having a normal lifespan after this procedure.
Average survival duration is 3.4 years after the lung transplant for children with cystic fibrosis.

"In a 2007 study, researchers at the University of Utah examined the risks and benefits of lung transplants for cystic fibrosis patients. They looked at 514 children with cystic fibrosis on the waiting list for a transplant, including 248 who did receive a transplant. Less than 1 percent of the transplant patients benefited from the procedure, the researchers concluded."

http://news.yahoo.com/lung-transplants-controversial-cystic-fibrosis-patients-140058226.html

Cystic fibrosis is one of the main reasons people get lung transplants:

Lung transplants in the United States usually are done for the following reasons:

• Chronic obstructive pulmonary disease , including emphysema (27% of all U.S. lung transplants, according to 2005 data)
• Cystic fibrosis (14%)
• Idiopathic pulmonary fibrosis (16%)
• Alpha1-antitrypsin deficiency (5%)
• Primary pulmonary hypertension (12%)
• A second transplant after a first lung transplant fails (2%)
• Other causes (24%), including bronchiectasis and sarcoidosis http://www.intelihealth.com/IH/ihtIH/c/9339/31212.html

Also, contrary to the one study linked to above, lung transplants benefit people with CF:

Although recent population-based analyses of the US lung allocation system for the CF population have raised controversies about the survival benefits of transplantation, studies from the United Kingdom and Canada have suggested a definite survival advantage for those receiving transplants. http://www.atsjournals.org/doi/full/10.1513/pats.2009008-088TL

See also,

The success of lung transplantation is measured by the average length of survival of the person who got the lungs after the operation. Of people with CF, over 80 percent are alive 1 year after transplantation, and over 50 percent are alive after 5 years. Following surgery, a person may be discharged from the hospital in a few days, week or months, depending on the person’s health and complications.
People with CF generally do well after lung transplantation — often better than people with other lung diseases do.
http://www.cff.org/treatments/lungtransplantation/

And:

CONCLUSIONS: Lung transplantation conferred transplant benefit in a Western European cohort of adults, in particular for patients with pulmonary fibrosis and cystic fibrosis, but also for patients with emphysema. The global survival rate, reflecting the real life expectancy for a newly listed transplant candidate, is poor for patients with pulmonary fibrosis and pulmonary hypertension. Allocation algorithms that lessen the impact of waiting time and take into account the type of end-stage lung disease should be developed.http://www.ncbi.nlm.nih.gov/pubmed/11343978

http://www.atsjournals.org/doi/full/10.1513/pats.2009008-088TL

My post hasn't stated anything about anybody on this thread saying or posting she will be cured by lung transplant. I am talking about msm articles like the one below claiming her condition will be "essentially cured" by lung transplant. Which is not true. She still has cystic fibrosis.
Her life expectancy isn't normal. Average survival in children with cystic fibrosis after lung transplant is 3.4 years, according to the study I posted upthread.

"But if they get a lung transplant, the condition is essentially cured."
http://www.whas11.com/news/health/P...t-Out-of-Reach-for-10-Year-Old-209322251.html

Average survival for ANYONE with a lung transplant, not just CF patients, who tend to do better than some with other conditions, is not that great:

Risks
Although lung transplants were first done in the 1960s, the procedure was not used widely until the 1990s. Survival statistics have improved over time. But lung transplants remain very risky, especially compared to kidney or heart transplants. According to the latest survival statistics from the UNOS registry:

• About 10% of transplant patients die within the first month of their surgery.
• Twenty-three percent die within the first year of their surgery.
• Thirty-eight percent die within the first three years of their surgery.
• Fifty-four percent die within the first 5 years of their surgery.http://www.intelihealth.com/IH/ihtIH/c/9339/31212.html

I can't believe she got another transplant so quickly after the first set failed. Does that seem odd to anyone else? Do other transplant patients who have a failed transplant get another try again in just a few days?

ETA: I spoke too soon. No, they don't. It's very rare to get another try like she did. This reeks of favoritism and using a judge to bypass decisions that should be made by medical experts.

The parents used the media to get what they wanted and then go mum after they get what they want, IMO.

I sense a trend in our country of extreme anger toward those others feel are complaining too much. Those who feel, for example, that student loan or mortgage rates are so out of control as to be usurious, those who feel health care should be provided at low rates, those who feel they should be able to maintain the pensions and salaries promised to them when they accepted a position, those who feel their bosses should not be able to cut their wages or hours or benefits or treat them like cattle, those who argue against their employers who force them to leave out raw meat near a dumpster and then feed it to customers.

People who fight for change are often seen, IMO, as trouble makers who have an inflated sense of entitlement and want something for nothing. They are expected to put up, shut up and allow the big dogs to do what they will.

Well, there are some who don't want to play by the rules and sometimes they are just takers but sometimes they are just fighters. And sometimes the rules just need to change.

I am not a medical ethicist and do not know if it is ethical that this little girl went on the adult list, or not. I am a bit on the fence but feel I do not know enough to be certain.

However, I do sense a rage at her parents that I think may fall into that category above - the how dare they complain category: People should shut up and accept what they get in life because dammit, everyone else does. What makes any one person so special?

I don't begrudge what these parents did. They had every right to do what they did under the law. But, for the most part, I also think medical decisions should be made by doctors - not judges (or insurance companies).

To suggest, however, that this kid got everything she did solely because of pressure of her parents, may not be that accurate. From what I have read, the first set of lungs were not that viable to begin with. In other words, they were compromised and likely would not have had much success in any patient. As to the second set, they were already infected with pneumonia when transplanted.

Any person who receives a transplant deprives someone else of a transplant. But I can't say that either set would have helped another person. Lung transplants in general don't have the greatest success rates, despite benefiting CF patients in general.

And Sarah's first set apparently, weren't great lungs to begin with:

The mother said the first set of lungs were not rejected by the girl’s body, rather “marginal” and had to be removed shortly after the procedure.http://www.nbcphiladelphia.com/news...evelops-Pneumonia-in-New-Lungs-214631701.html

Further, apparently failure of the lungs right after transplant is not uncommon:

The failure of the first transplant is not uncommon. A 2005 University of Pennsylvania study found nearly 12 percent of lung transplants experienced what's called primary graft failure, where the organ almost immediately begins to fail. http://www.huffingtonpost.com/2013/06/29/sarah-murnaghan-health_n_3521524.html

Of course, getting a second set so soon is not that common, but that second set she got were already diseased:

Within three days, on June 15, a new set of lungs became available, her parents said. Those organs were infected with pneumonia, but the family agreed to take them because the organs represented Sarah’s last chance at life. http://www.dailymail.co.uk/news/art...-double-lung-implanted-days-failed-died.html#

It was said over and over by many people that adult lungs are not viable for a child's body. But supporters didn't want to listen. They believed that these would be "A Very Special Pair of Lungs" but nope, they failed within hours, just like experts had predicted. They basically just threw a set of lungs in the trash. What happens when the second transplant fails? I am sure she will get a third one in days too. Whatever PR team wants, PR team gets

I think this is harsh and unfair. It was said over and over again by people who are not lung experts that adults lungs are not viable for a a child's body. But not once did I see a link from an actual medical researcher article or scientific data supporting this lay opinion. Instead, here's what I found:

The main reason is because adult donor lungs are large and kids under 12 are small, and the lungs don't fit. So you wind up having to use a piece of the lung, if you will, taking out a lobe and putting it in. Now, unlike other organs, like the liver, the lung doesn't grow back. So a lot of surgeons have felt if you are going to transplant a lobe of lung, that is riskier, more prone to trouble. Others disagree. But the basis of the rule was partly due to the size problem, and then some of the challenges that younger kids pose in terms of immunosuppression, the drugs you have to take after you get a transplant.
Both of those factors were seen as, if you will, diminishing the chance of success by many in the transplant field. http://www.pbs.org/newshour/bb/health/jan-june13/lung_06-11.html

This doesn't say that adult lungs are not viable in children. It says that some surgeons feel just transplanting a lobe is riskier and many in the field felt it diminished the chance of success. That's quite different from not being viable at all. And since lung transplantation is so shaky to begin with when it comes to success, we really have no way of knowing whether the lungs Sarah received would have worked in anyone at all.

However, is everyone aware that "cutting down lungs" or using only part is actually not atypical? Some transplants consist of two whole lungs, some of one lung and some of just lobes or parts of the lungs.

A lung transplant is a surgical procedure performed to remove one or both diseased lungs from a patient and replace it with a healthy one from another person. The majority of lungs that are transplanted come from deceased organ donors. This type of transplant is called a cadaveric transplant. Healthy, nonsmoking adults who make a good match may be able to donate a part (a lobe) of one of their lungs. This type of transplant is called a living transplant. Individuals who donate a part of a lung can live healthy lives with the remaining lung tissue.
Various types of lung transplant procedures include single lung (transplantation of one lung); double lung, bilateral sequential, or bilateral single (transplantation of two lungs); and heart-lung transplants (transplantation of both lungs and the heart taken from a single donor). The type of procedure performed depends on the condition of the recipient.http://www.hopkinsmedicine.org/heal...ary/lung_transplantation_procedure_92,P07752/

So I'm, kind of sick of hearing how a perfect set of lungs was destroyed to fit a kid who should not have had them. That's not a great argument to me.

Like I said, I am on the fence as to the ethicality of what happened here but to say that the lungs didn't "fit" is, based on the science I have researched, not the strongest argument against it.

Finally, as I cited above, it is highly common for new lungs to fail immediately. Happens all the time.

Adult lungs don't fit a child. Doctors have to cut them. And the lungs are likely already not in the best condition, since lungs from brain dead person are not likely to be in the best condition. There are reasons for all these rules.

Please see above. I think there is some confusion about the reason for the rules. I know I have been confused. And people keep saying the lungs have to be cut. In actuality, it is the lobes that are removed and replaced when lungs don't "fit" but again, apparently, that is one of the forms of transplant to begin with. What was done for this kid was not experimental surgery. It occurs all the time.

Sadly, I don't think this baby is going to survive. She was so sick to begin with and the survival rate for people with lung transplants is not that great anyhow. I'm glad she got a chance, I don't think her parents are scammers and I don't think they broke any rules to fight for their kid's life. I do have some reservations about the courts getting so involved in medical decisions like this one though and I wonder if there needs to be some changes as to what is allowed and what isn't with the appeals process. Ultimately, I am on the fence as to whether Sarah should have been placed on the adult list. I just don't get the rage against her parents.

 

[jjenny]

While it might not be considered experimental, adult into child lung transplant surgery doesn't occur all the time. It's extremely rare.

"Sarah's June 12 lung transplant from an adult donor was the 11th of its kind since 1987. The last transplant from a donor older than 18 to a child younger than 12 took place a few months ago, according to an OPTN spokeswoman. The one before that happened in 2006, when the Under 12 Rule was new."
http://abcnews.go.com/Health/murnaghans-face-backlash-lung-transplant/story?id=19421843#.UdwKqqzYGXc

 

[jjenny]

http://www.cbsnews.com/8301-204_162...ransplant-recipient-has-aspiration-pneumonia/

Lungs transplanted from a brain dead donor are not likely to be in great shape-I presume that's because when brain dead person is on life support that damages the lungs.

 

[Zuri]

Lungs transplanted from a brain dead donor are not likely to be in great shape-I presume that's because when brain dead person is on life support that damages the lungs.

You are correct IMO. That is why organ harvesting is done as quickly as possible once the donor is declared clinically dead. We called KIDNEY 1, the organ donation hotline, from the ER, as soon as we had a known viable donor.

 

[Zuri]

Update: pneumonia in one lung.......

http://www.foxnews.com/health/2013/...acts-pneumonia-in-right-lung/?test=latestnews

But aspiration pneumonia seems slightly unlikely if she has a cuffed ET tube (sorry, just the nurse thinking aloud...) But again, everything is filtered through the mother- and who knows if they ran this past her as a possible scenario (a laundry list of pneumonia causes) or if she aspirated during the brief time she was extubated. Hmmm........

I really admire what you do. People don't realize how difficult taking care of kids in the PICU can be. I have done adults my entire career which IMO is emotionally a little easier. I took care of a 10 year old in the surgical ICU who was brain dead after being hit by a car. His parents donated his organs. I cried my entire 12 hour shift. This was in 1985. I have never forgotten it. JMO

 

[gitana1]

While it might not be considered experimental, adult into child lung transplant surgery doesn't occur all the time. It's extremely rare.

"Sarah's June 12 lung transplant from an adult donor was the 11th of its kind since 1987. The last transplant from a donor older than 18 to a child younger than 12 took place a few months ago, according to an OPTN spokeswoman. The one before that happened in 2006, when the Under 12 Rule was new."
http://abcnews.go.com/Health/murnaghans-face-backlash-lung-transplant/story?id=19421843#.UdwKqqzYGXc

That's true, but the same type of procedure, transplanting part of lungs, or lobes, is not rare. Adult to child lung transplants are because of the rules, but transplanting parts of lungs in teens or adults, which is essentially, it appears, what "cutting down lungs to fit" is, is not that rare, apparently.

 

[jjenny]

That's true, but the same type of procedure, transplanting part of lungs, or lobes, is not rare. Adult to child lung transplants are because of the rules, but transplanting parts of lungs in teens or adults, which is essentially, it appears, what "cutting down lungs to fit" is, is not that rare, apparently.

But we are discussing an adult to child transplant, not adult to adult or child to child transplant.

"One of those facts, he says, involves statistics showing children receiving adult lungs or even pieces of the organ have a poor survival rate after surgery."
http://philadelphia.cbslocal.com/20...es-politicking-in-girls-lung-transplant-case/

 

[gitana1]

But we are discussing an adult to child transplant, not adult to adult or child to child transplant.

"One of those facts, he says, involves statistics showing children receiving adult lungs or even pieces of the organ have a poor survival rate after surgery."
http://philadelphia.cbslocal.com/20...es-politicking-in-girls-lung-transplant-case/

I know. And lung transplants in general have a poor success rate. However, I do realize that the probability of results is a large part if transplant boards' decisions regarding lists and placement on lists. I can just see the argument both ways here.

 

[Linda7NJ]

I think the focus should be on procuring more organ donors.

 

[meanmaryjean]

Anybody seen an update?

 

[BuzzieCat]

http://www.usatoday.com/story/news/nation/2013/07/12/girl-lung-transplant-tracheostomy/2513337/

The mother of a 10-year-old girl whose fight to obtain a lung transplant resulted in a court ruling in her favor says her daughter's out of surgery for a tracheostomy and is resting comfortably.

http://seattletimes.com/html/nationworld/2021380297_apuslungtransplantpennsylvania.html

The procedure, a tracheostomy, created an opening into Sarah's windpipe that she can breathe through. Janet Murnaghan said it will allow her daughter to speak, eat and drink without a ventilator, and make it easier for her to get out of bed and engage in rehabilitation programs.

Link to a study called: Tracheostomy following lung transplantation predictors and outcomes.
http://www.ncbi.nlm.nih.gov/pubmed/12814482

Although tracheostomy is more likely in sicker patients, it is not associated with poor long-term outcomes.

 

[meanmaryjean]

The part about eating and drinking without a ventilator is incorrect. A tracheostomy allows one to eat and drink by mouth WITH a ventilator - and then only sometimes. (Oftentimes, an implanted feeding tube is needed.)

This tells me that the child will be ventilator dependent for however long the rest of her life is. Which is heart-breaking.

 

[CatFancier]

Desperate for transplant, she's still glad Pa. girl got lungs

But Smith said she was moved by Sarah’s plight even more than her own because no child should have to endure the wait for new lungs.

“I know how hard it is for me; I couldn’t even imagine how hard it is for her,” said Smith. “My first thought was, basically, as sick as I am, I could say if my lungs were to come, I would have given up my chance to give her a chance to live.”

http://www.nbcnews.com/health/desperate-transplant-shes-still-glad-pa-girl-got-lungs-6C10622690

 

[Reader]

Sarah Murnaghan's Mom Says Today Was "A Good, Busy Day"

Posted: Jul 13, 2013 5:40 PM EDT

"Sarah and I have been busy watching you tube videos--of pigs--and movies. She laughed for the first time since transplant. Its been a good busy day!"

http://www.myfoxphilly.com/story/22825560/sarah-murnaghans-mom-says-she-had-successful-tra

Little more at link.....site has regular updates on Sarah but just short articles...scroll down...

 

[Linda7NJ]

http://www.nj.com/politics/index.ss...isabled_people_organ_transplants_now_law.html

TRENTON — Hospitals and doctors would be prohibited from taking a patient's mental or physical disability into account when being considered for an organ transplant under a bill Gov. Chris Christie signed into law today.

More at link

 

[Linda7NJ]

I think in my sons lifetime... Organs will be simply printed and grown

Bioprinting is amazing!

http://www.explainingthefuture.com/bioprinting.html

 

[Reader]

Sarah Murnaghan Making More Progress, Mom Says

http://www.myfoxphilly.com/story/22887044/sarah-murnaghan-making-more-progress-mom-says

Updated: Jul 19, 2013 4:04 PM EDT

PHILADELPHIA -
Forget slow and steady – Sarah Murnaghan's mother says that her 10-year-old has made so much progress their heads are spinning.........

According to her mother, Sarah as of Friday has had her first tracheotomy change and her last chest tube removed – and did a dance in bed over that one.

Doctors have also moved the young Delaware County girl back to a traditional ventilator.

"Our heads are spinning, definitely not slow and steady today, just improving left and right," her mother said. "I am so proud of her! We are told a move out of Cardiac Intensive Care Unit is in our near future, now that will be a victory. Stay tuned..."

 

[meanmaryjean]

"back to a traditional ventilator"? Meaning she was on an oscillator? OR meaning she is transitioning to a 'home vent'?

For the uninitiated, there are thousands of children in the US on ventilators at home. These children, for whatever reason, require permanent ventilator support to survive. ALL such children require a permanent tracheostomy tube which is changed out weekly. They are cared for by their parents with some nursing support.

The cases I've worked in the past get 8-10 hours/ day, 5-7 days per week of nursing support care. All the other hours of the week, they are cared for by the parents.

Just some background information.....