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This is why the courts need to stay out of medical decisions. Girl gets second lung transplant

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Pennsylvania girl gets second lung transplant after first failed

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Reuters

By Francesca Trianni

NEW YORK (Reuters) - A 10-year-old Pennsylvania girl who sparked a national debate about child access to organ donation took her first independent breath this week on a second set of donor lungs after her first transplant failed, the girl's family said on Friday.

Sarah Murnaghan, who had cystic fibrosis and needed a lung transplant, had been kept off an adult organ transplant list due to an age restriction. She became eligible for an adult pair of lungs only after a judge's order.

The girl received the first transplant on June 12 but had to be put back on a waiting list to receive another organ donation after complications arose.

The girl underwent a second surgery, her family said in a statement, performed by the same surgeon who did the first transplant, Dr. Thomas Spray, at Children's Hospital of Philadelphia.

"The road to recovery is long and Sarah's fight is not over," parents Janet and Fran Murnaghan, who live in the Philadelphia suburb of Newtown Square, wrote on Facebook on Friday.

The girl's family had sued to prevent the U.S. Department of Health and Human Services from enforcing a policy that prevents children under 12 from receiving adult lung transplants, even if they are extremely ill.

The girl was set to undergo another surgery on Monday to provide the lungs with greater volume for expansion and remove a tube, the family's statement said.

by on Jun. 28, 2013 at 7:34 PM
Replies (41-50):
romalove
by Roma on Jun. 29, 2013 at 12:13 AM


Quoting grandmab125:

 From cff.org site:

Once the person has received a lung transplant, does CF "go away"?

Transplanted lungs do not have CF because they come from people who do not have CF. However, after the transplant, the person still has CF in the sinuses, pancreas, intestines, sweat glands and reproductive tract.

The new lungs do not “get” CF, but immunosuppressive drugs may decrease the ability to fight germs like Pseudomonas aeruginosa (Pseudomonas) and Burkholderia cepacia complex (B. cepacia). These germs may stay in the upper airways after a transplant and can infect the new lungs. The risks of infection are highest right after the transplant operation. This is because immunosuppressive drugs are given at the highest doses right after the transplant so the body will not reject the new lungs. These drugs make it hard for the body to fight infections, and this can lead to lung infections.

Quoting romalove:

Cf is not cured with a transplant.

Quoting T-HoneyLuv:You would fight for your child. Transplant is not easy but kids are resillient and they are fighters. They WANT to live and yes, post transplant recovery, the anti-rejection meds and immunosuppressants are horrible but it is not a waste if these children can finally live the life that they so desperately dream of.




Quoting romalove:


Quoting T-HoneyLuv:

You know what? If it was any of your children, ALL of you against it would be singing a different tune. And yes this is coming from a parent of a child who will need a life saving organ transplant.

I know why you are saying this.

I don't think I would.

I know too much about the perils of this kind of surgery with children, and how different it would be for an adult to have the transplant.  



 

I'm aware.

I'm also aware the children do worse with the immunosuppresants than adults do.

And I have a friend who has two CF sisters, one had a lung transplant at 21 and has since passed away, the other is on the list now, and she's almost 21.


desertlvn
by Silver Member on Jun. 29, 2013 at 12:17 AM
2 moms liked this


I agree. I have a friend whose son's (5) brain cancer just returned. How could you NOT fight for your child's life? 

Quoting prommy:


Quoting T-HoneyLuv:

You know what? If it was any of your children, ALL of you against it would be singing a different tune. And yes this is coming from a parent of a child who will need a life saving organ transplant.

Yup. People who never had to watch their child struggle to NOT DIE don't have a clue about the lengths they'd go to just to have some hope. I hope your child gets the transplant he/she needs. 



desertlvn
by Silver Member on Jun. 29, 2013 at 12:23 AM
2 moms liked this



Quoting AtiFreeFalls:

 I must be missing something.  It seems like common sense. Any parent would give ANYTHING to save their child.  If she was approved for this transplant and it has a chance at giving her a few more years, why would anyone be against it?

Because they are looking at it from the eyes of an outsider. It is easy to assume we know what we'd do. The truth is that letting your child die when more could be done, would be a gut wrenching choice. I know that I want to ALWAYS know that I did everything possible for my children.


desertlvn
by Silver Member on Jun. 29, 2013 at 12:24 AM
2 moms liked this



Quoting romalove:


Quoting grandmab125:

 From cff.org site:

Once the person has received a lung transplant, does CF "go away"?

Transplanted lungs do not have CF because they come from people who do not have CF. However, after the transplant, the person still has CF in the sinuses, pancreas, intestines, sweat glands and reproductive tract.

The new lungs do not “get” CF, but immunosuppressive drugs may decrease the ability to fight germs like Pseudomonas aeruginosa (Pseudomonas) and Burkholderia cepacia complex (B. cepacia). These germs may stay in the upper airways after a transplant and can infect the new lungs. The risks of infection are highest right after the transplant operation. This is because immunosuppressive drugs are given at the highest doses right after the transplant so the body will not reject the new lungs. These drugs make it hard for the body to fight infections, and this can lead to lung infections.

Quoting romalove:

Cf is not cured with a transplant.

Quoting T-HoneyLuv:You would fight for your child. Transplant is not easy but kids are resillient and they are fighters. They WANT to live and yes, post transplant recovery, the anti-rejection meds and immunosuppressants are horrible but it is not a waste if these children can finally live the life that they so desperately dream of.




Quoting romalove:


Quoting T-HoneyLuv:

You know what? If it was any of your children, ALL of you against it would be singing a different tune. And yes this is coming from a parent of a child who will need a life saving organ transplant.

I know why you are saying this.

I don't think I would.

I know too much about the perils of this kind of surgery with children, and how different it would be for an adult to have the transplant.  



 

I'm aware.

I'm also aware the children do worse with the immunosuppresants than adults do.

And I have a friend who has two CF sisters, one had a lung transplant at 21 and has since passed away, the other is on the list now, and she's almost 21.


We're all a ticking time bomb. Why is this child's extra years less important than someone else's? 


Sisteract
by Whoopie on Jun. 29, 2013 at 12:26 AM
3 moms liked this

This is false hope-

I find it interesting that these folks screamed at every media source when they were looking to have her placed on the adult list, yet remained mute when it came to the organs failing and the child undergoing a second surgery.


Unless she received gene therapy and a new pancreas, the sticky mucus production will continue. The mucus causes the infections which scar lung tissue-

Again, if heaven is eternal salvation, why obstruct the natural process and better solution?

Where's the faith when the hard situations present? Where's the actions over words?

T-HoneyLuv
by on Jun. 29, 2013 at 12:33 AM
1 mom liked this
Again, I hope that you are never faced with a decision like that. You have NO idea how it feels to see your child slipping away and knowing that their is a chance to give them more time and you didn't take it.
Oh and my faith in God does not falter even during some of my sons darkest days. When He is ready to take someone home, he does. No amount of intervention will stop that at that time.


Quoting Sisteract:

This is false hope-

I find it interesting that these folks screamed at every media source when they were looking to have her placed on the adult list, yet remained mute when it came to the organs failing and the child undergoing a second surgery.


Unless she received gene therapy and a new pancreas, the sticky mucus production will continue. The mucus causes the infections which scar lung tissue-

Again, if heaven is eternal salvation, why obstruct the natural process and better solution?

Where's the faith when the hard situations present? Where's the actions over words?


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stormcris
by Christy on Jun. 29, 2013 at 12:34 AM

I think the fact that they may have a cure which is being tested just here shortly in a way puts a different light on it. I can understand your point but then it is also the question of why try and help the children with thoracic insufficiency when they have to have multiple surgeries as well and are most likely going to succumb to some illness at some point. The child wanted to live and that is what should be considered. Children as young as three who have cancer will tell you, often with the wisdom of elders, that they are okay with death and that dying is acceptable to them. This young girl did not say that.

Quoting Sisteract:

I think it's selfish to put the child through multiple transplants which will not solve her underlying problem. LUNG failure is not the cause of CF, it is a result of CF. Any lungs received will become infected, scarred and eventually fail. So now this child will deal with CF AND the life long consequences associated with transplantation.

The parents did this for THEMSELVES not for her, IMO.

For the religious, why not let this child go home to her creator?


Mommy_of_Riley
by Jes on Jun. 29, 2013 at 12:48 AM
It seems the donor lungs were bad and it wasn't the girls' fault that they failed...

If it was an adult they would get a new set as well...
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tossed
by Member on Jun. 29, 2013 at 12:50 AM

I would fight to buy my child more time, especially if she told me she wanted to live. 

Although it was a different circumstance, I had to have a serious discussion with my son about a major and anatomy altering surgery when he was 10. I had a family member who constantly questioned my decision to go ahead with the decision. We had the surgery and he was healthy for the first time in his life. Sadly, the surgery failed a few years later and we faced a 2nd surgery which was much more difficult. I am thrilled that this surgery has held. He will always be at risk. He knows that. He is now an adult and will always have to be careful. This life altering decisions are hard to make. Our decision was no where near this level, but it is hard when you are making the decision for another person. 

gdiamante
by Silver Member on Jun. 29, 2013 at 2:34 AM
1 mom liked this

When I read this, I remember my mom's reaction when she learned her cancer was inoperable. They could have given her chemotherapy to extend her life by a year to 18 months, but she strongly felt there was no point to it. The chemo made her miserable and she preferred a few good months to a lot of bad months. That's exactly what she got; five good months.

Remembering that, I would have to ask a doctor whether a transplant would give my child an extended life of better or worse quality, bearing in mind the risks of organ rejection. And I'd have to make the decision based on that. 

I hope this little girl recovers and has a good extended life.

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