Mom Claims CHOP Refuses to Give Special Needs Child Transplant

[Linda7NJ]

"normal" healthy foster children also can not recieve donated organs.

Honestly, I don't know how I feel about it.......

 

[jjenny]

"normal" healthy foster children also can not recieve donated organs.

Honestly, I don't know how I feel about it.......

I didn't know that at all. How is that justified?

 

[peeples]

I didn't know that at all. How is that justified?

I'm just guessing....
Most foster kids are being supported by the state, 9 times out of 10 bio. parents don't do much contributing to their foster care support even though they are court ordered to do so. guessing with the high costs of transplants.. states cannot afford it.

 

[SilkySifaka]

I'm just guessing....
Most foster kids are being supported by the state, 9 times out of 10 bio. parents don't do much contributing to their foster care support even though they are court ordered to do so. guessing with the high costs of transplants.. states cannot afford it.

Wow..just wow..unbelievable...I am canadian and can't fathom allowing children die because they don't have the means for a transplant. wow.

 

[Kimberlyd125]

The doctor sounds like he is in need of a heart transplant because his heart is obviously not functioning or is made of stone.

But based upon his behavior, he should be denied a heart transplant because I have serious doubts about HIS intelligence based upon his actions.

Great post!!!

ITA

 

[butwhatif?]

The disabilities in a person with this syndrome are profound. As far as I can tell from the video the child doesn't talk and might never talk because of this condition.

That doesn't mean the child doesn't have emotions or feel pain, or has nothing to contribute to the world.

Carly is an excellent example. She was dx'ed with severe autism and mental retardation and didn't speak a word. Even her own family didn't know that even though she couldn't talk, she was taking everything in.

http://www.youtube.com/watch?feature=player_embedded&v=vNZVV4Ciccg

And look at where she is today:
http://carlysvoice.com/

I would hate to think that Amelia isn't given the same chance to prove that she is worth saving, and that she matters, despite her condition.

 

[Linda7NJ]

I didn't know that at all. How is that justified?

The way it was explained to me was that foster care is not stable. The after care and intense medical schedule can't be entrusted to foster parents.

The shortage of organs, the state of our health care system and the best candidates for the possible outcome must be taken into consideration. Without HUGE changes it is not going to change. Tough choice have to be made.

 

[LadyLuck]

I would have to have more information before I could voice an opinion on this case. I do know that having a kidney transplant is very expensive even with good insurance. The drugs that they have to take for the rest of their lives is very expensive. The person receiving the transplant has to be able to monitor their health, remember to take their meds and much more. My husband and oldest son had transplants. My youngest has had a head injury so I am not sure when his time comes if he will be able to have a transplant. I know that I will not outlive him and there is no way he could remember to take the meds and keep up with everything that he would have to if he had a transplant. There are no easy answers to a lot of health issues.

 

[jjenny]

The child with this syndrome is not likely to be able to take the meds by herself. This is a severe disability. But she does have a good support system in her parents (or they wouldn't be trying to get a transplant for her). They will likely outlive her because individuals with this syndrome do not have a normal lifespan.

 

[BuzzieCat]

I too would like more information. It's possible that the family's account is 100% true, and if so that's awful. But I don't want to get all riled up without knowing the whole story. I guess I'd like to think that's not really what the doctor told them. Maybe it is, I just don't know.

Maybe the child is not in a physical condition to be able to withstand the surgery and/or the medications that would be required afterward. That's the only reason I can think of that would make sense for rejecting her, especially if the parents can procure their own donor.

 

[jjenny]

I haven't considered this aspect. Apparently, there might be issues with an adult donating a kidney, since adult's kidneys are too large to fit a child. I firmly believe that taking a kidney from one child to give to another would be unethical. It does not benefit the donor child to take kidney from him or her to give to someone else. There are also additional health issues that could exist in a child with this syndrome, that could affect the success of kidney transplant.

"Most adults can't donate an organ because it won't fit" a child, Caplan said. "You're starting to say you're going to use another child as a living donor, and that's ethically really trouble."
http://www.cbsnews.com/8301-504763_...-denied-transplant-blame-doctor-not-hospital/

 

[BuzzieCat]

"Most adults can't donate an organ because it won't fit" a child, Caplan said. "You're starting to say you're going to use another child as a living donor, and that's ethically really trouble."
http://www.cbsnews.com/8301-504763_...-denied-transplant-blame-doctor-not-hospital/

I hadn't thought of that, either. It would have to be a pretty tiny adult, I guess. I wouldn't feel comfortable with a child donating a kidney, either, I don't think.

 

[mom2six]

"Most adults can't donate an organ because it won't fit" a child, Caplan said. "You're starting to say you're going to use another child as a living donor, and that's ethically really trouble."
http://www.cbsnews.com/8301-504763_...-denied-transplant-blame-doctor-not-hospital/

Sounds like an excuse. Here's from a different hospital's webpage:

Research completed at Lucile Packard Children's Hospital (LPCH) demonstrates that a kidney transplanted from an adult donor into an infant or small child has the greatest chance of success of any organ transplant in any age group. The best results come with kidneys from living donors, although deceased-donor kidneys succeed relatively well.

http://www.lpch.org/clinicalSpecialtiesServices/COE/Transplant/KidneyTransplant/adultKidneys.html

 

[BuzzieCat]

Maybe CHOP doesn't do the special treatment that is required for an adult organ to "take" in a child. I don't know. Do the parents have any other hospital available to them?

 

[jjenny]

Sounds like an excuse. Here's from a different hospital's webpage:



http://www.lpch.org/clinicalSpecialtiesServices/COE/Transplant/KidneyTransplant/adultKidneys.html

There might be a few hospitals doing adult to child kidney transplant, but possibly CHOP isn't one of them? Sounds like at this time it's not widely practiced. Also, the child with this syndrome could have multiple health issues, not just mental development, that could potentially affect the success of the transplant.

 

[Kimberlyd125]

I thought the decision was made by the dr solely based on the child's mental capacity.

From the article linked in Post #1:

The doctor told them that he would not recommend a kidney transplant for their young daughter because she is mentally disabled, Chrissy Rivera said.

 

[jjenny]

I thought the decision was made by the dr solely based on the child's mental capacity.

From the article linked in Post #1:

The doctor told them that he would not recommend a kidney transplant for their young daughter because she is mentally disabled, Chrissy Rivera said.

But we only heard one side of the story. The hospital can not give an explanation because of medical privacy laws.

""We're seeing this more and more where very private, difficult medical decisions are debated in the media without the full facts," Happ said, adding that while the general discussion can be good, the risks of one side or another inflating the situation is problematic."
http://www.cbsnews.com/8301-504763_...-denied-transplant-blame-doctor-not-hospital/

 

[Kimberlyd125]

Oh ok.

I believe the parents.

JMO

 

[mom2six]

From CHOP's own website:

The majority of kidneys that are transplanted come from deceased organ donors. Organ donors are adults or children who have become critically ill and will not live as a result of their illness. If the donor is an adult, he/she may have agreed to be an organ donor before becoming ill. Parents or spouses can also agree to donate a relative's organs. Donors can come from any part of the United States. This type of transplant is called a cadaveric transplant.
A child receiving a transplant usually receives only one kidney, but, in rare situations, he/she may receive two kidneys from a cadaveric donor. Some experimentation with splitting one kidney for two recipients is underway. Family members or individuals who are unrelated but make a good match may also be able to donate one of their kidneys. This type of transplant is called a living transplant. Individuals who donate a kidney can live healthy lives with the kidney that remains. While most children requiring kidney transplants weigh more than 15 kilograms, or 33 pounds, some transplant centers are able to transplant adult kidneys into children and infants weighing only 5 kilograms, or 11 pounds.

I would be highly incredulous if a Children's hospital which does transplants claims it doesn't have the means to do an adult-child kidney transplant. There is no indication that CHOP wouldn't have the skills necessary. The site indicates either adult or child donor organs are used.

 

[jjenny]

Oh ok.

I believe the parents.

JMO

I believe them to, but clearly they are very determined people (to do everything possible for their child) so I would like to know the hospital's side as well. Their child did have heart issues according the video, which could potentially affect the success of kidney transplant according to the article.

""Co-existing health problems such as weakened immune system and/or heart disease, which are prevalent in (Wolf-Hirschhorn syndrome), are an additional risk that transplant centers and parents must consider," Happ wrote in an email."
http://www.cbsnews.com/8301-504763_...-denied-transplant-blame-doctor-not-hospital/