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Subscribe to RSSThree-year-old Amelia Rivera has a rare, very serious genetic disease known as Wolf-Hirschhorn Syndrome that can cause mental impairment, epileptic-like seizures and kidney failure. In the future, it's very likely she’ll need a transplant.
But, according to her parents, Amelia's mental disabilities are the reason she's being denied the kidney transplant. Her parents told the Associated Press Wednesday that the decision is being determined by a doctor with The Children's Hospital of Philadelphia.
AP
The parents of 3-year-old Amelia Rivera, claim she is being denied a kidney transplant because of her mental disabilities.
"It's one doctor who's never seen us who is making this call," the father, Joe Rivera, told the Associated Press.
In a recent blog post written by her mother, Chrissy Rivera says they were told by her doctor and social worker that Amelia would not be a candidate for a transplant because of her mental disability, not even if a family member donates a kidney.
In the blog post, Rivera recounts this exchange with the doctor when she heard the news:
“So you mean to tell me that as a doctor, you are not recommending the transplant, and when her kidneys fail in six months to a year, you want me to let her die because she is mentally retarded? There is no other medical reason for her not to have this transplant other than she is MENTALLY RETARDED!”
“Yes, [said the doctor]. This is hard for me, you know.”
The blog post sparked an online firestorm -- including more than 15,000 signatures on a petition demanding that the decision be reconsidered by the Children’s Hospital of Philadelphia, an affiliate of the University of Pennsylvania where I work.
In response to the uproar, the child's parents are planning to meet with hospital officials next week, according to AP.
The issue of disability and access to a life-saving transplant merits serious reflection.
Whether the kidney comes from a cadaver donor or a living one, transplant teams always think about a set of medical facts in deciding whether to transplant anyone. Is the person able to go on kidney dialysis? Is she healthy enough to survive surgery? Does the patient have a donor who closely matches her blood and tissue type increasing the chance that the transplant will work? There is nothing special about the presence or absence of mental disability with respect to these questions. But morally, things get a little stickier.
Those being considered for a transplant must be able to comply with what is required after a transplant — taking a lot of medicines and watching out for early signs of rejection of the transplanted kidney. This means that those with severe mental impairment need willing, round-the-clock helpers so that the transplant has a reasonable chance of succeeding.
Transplant teams also think about the chance for long-term survival, especially when a scarce cadaver kidney is involved. Some severe mental disabilities are linked to genetic problems that create other daunting physical challenges -- bad hearts, severe diabetes, malformed organs, etc., which can drastically shorten lifespan.
Because of that, some transplant programs don't consider operating on those who are facing significantly shortened lives on the grounds that the need for transplants among kids is huge and the scarce supply of cadaver kidneys should be used to save the most lives and the most years of life.
It’s even more complicated when the patient is a very disabled person who resides in a care facility. A child who is immunosuppressed, whose bodily defenses are knocked out to permit the transplant to work, will be put at huge risk of getting a deadly infection if she lives in an institution.
Each transplant case involving a disabled person has to be looked at individually. All that said, children with intellectual disabilities do not appear on transplant waiting lists with the frequency that should be expected. And in 1990 Congress passed the Americans with Disabilities Act which prohibits discriminating against patients solely on the basis of a disability.
There are reasons why anyone with an intellectual or physical disability might not be considered a good candidate for a transplant. But those reasons, to be ethical, have to be linked to the chance of making the transplant succeed. Otherwise they are not reasons, they are only biases.
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The practice of eugenics towards the cognitively impaired community needs to stop now. This is the 21st century not the dark ages. Mental retardation or cognitive ability should not EVER be a condition to deny a person a transplant.
I think you're mistaken, Genenut. With a very limited resource such as an organ I think it is an injustice to others in need to give the transplant to a severely disabled person. If eugenics is being practiced, it's the God of the universe that's doing it. I am not suggesting that the life of this child be artificially shortened, just not prolonged. "God's will be done".
Kyle you are a sorry excuse for a human being! This is a 3 y/o child! I hope you never have an accident which effects your mental capacity, and if you do I hope you receive the same amount of compassion you are giving to this child. You don't have to agree with her family, but you should still respect that this is a human life we are talking about. Many people with mental disabilities live full, happy and productive lives. "People" like you are disgusting!
Who are we to determine how much value a person has?I'd bet she has imense value to her family and those that know her.
And where do you stop?Now it's mental retardation-but why not IQ,athletic ability,age?Oh and why should an adult who has destroyed their health by making poor choices-smoking,excessive drinking,poor eating,lack of activity-get an organ but not a child who has years to live?
We aren't, but keep in mind that many poor people are unable to get transplants also. That should show you what is "valued" in this country.
My view is this child will already have a shortened life unfortunately. A transplant if not accepted into her body could shorten her life even more and then the parents would probably sue becuase it didn't work. I don't think this is as cut and dry as the mothers blog makes it out to be.
Tyler please do something about Kyle's ability to post here with the rest of us. His post is BEYOND offensive.
I'm against transplants for all people. Let Mother Nature weed out the weak. Tough choice but Yes !
We all die sooner or later.
People keep saying that she was rejected because of her disability, but you're missing the crux of the mother's argument: this child would be rejected for her MENTAL IMPAIRMENT. The medical community is not saying she's not viable for a transplant because she wouldn't live long enough, they're saying, essentially, that an organ would be wasted on a child who is mentally impaired. That is eugenics. Would a child with down syndrome be rejected? They live an average of 50 years.
I'd like to point out, that if more members of our self-centered society were organ donors, we'd be able to be less "picky" about who gets an organ.
We can't give organs to somebody that really needs a transplant because we have to use them for people like Mickey Mantle. He was dying of cancer and liver disease. It was a race to see which would kill him first. So the doctors intervened - give him a new liver, that way he doesn't die from alcoholism but from cancer. He had no control over the cancer - that way he died a baseball hero from an uncontrolled disease rather than his uncontrolled drinking.
Do you people truly believe that this child was rejected solely on her disability? Really? Let's go over what the mother said. They have a kidney for the child. Problem is that she did not mention is that you cannot place an adult kidney in a child. Where are they getting this kidney? A child cannot make the decision to donate an organ. Another party cannot make the decision to donate another person's organ, even if it is their child. So in the end, they do not have an organ.
Emily, you are listening solely to the mother. The hospital cannot defend it self due to HIPAA laws. I can tell you, that one doctor does not make the decision. It is a transplant team. There is criteria. The transplants are prioritized. Some of the areas are viability, the family support as the recipient will need constant care and other risk factors. You cannot skip a day of meds as rejection can start that quickly. Blood pressure, temperature and urine output must always be monitored. It is constant and I did not list everything.
To 'the thinker'....please start thinking. Micky Mantle's case was the cause for laws that do not allow favoritism to occur in transplant decisions. Celebrities no longer get in front of the line. It is done by urgency and viability.
The problem is that the media has reported this story due to its sensational nature while slandering a world reknowned hospital. They never did their research. Clearly, the parents want their child to be saved, who wouldn't? I would do anything if my child needed an organ. But having dealt with a child in dire straits, I know we do not always understand things when communicated and nothing matters more than helping our child. It is understandable that the parents would go to such lengths, but the media needs to be more responsible and perform research. Really.
Bencas Yes you can place an adult kidney in a child, even as young as 1 yr old. I know of 2 toddlers who got transplants of kidneys from thier parents in the last couple of years.
Again , the only reason given to the mother to deny her child a transplant was Cognitive status.
Normally functioning adults/kids have a hard time adjusting after a transplant. There are very strict schedules that patients have to keep up with after transplant. Anti-rejection meds have to be taken in a particular order and at specific times, every day. What happens if this child lives to adulthood and is able to move out? Will she be able to stick to that schedule without having any issues?
While I am sorry this little girl is facing this, the doctors have to look at the big picture. And one piece of that picture is the patients ability to keep up the regiment required after the transplant. This is not about whether the transplants should go to mentally disabled in general or not. It's about who would have the best chance to make it through the transplant and continue living.
Genenut, it is not that simple. There are serious blood flow issues due to child's smaller heart and it requires yet more intensive care. Keep complicating it and that only provides more reason as to why this child is not on the list.
With transplants we have greater demand than supply, so tough decisions need to be made. Reality is that rich people will get more than poor people; no just a disabled issue.
We need to move beyond this with research that Republicans keep blocking because it is not in the Bible. If we could clone organs based on the patient's DNA, there would be no shortages, and far less rejections.
Politicians stopping basic research in this country for religious reasons does not stop the work, it just means that it is not available in this country and rich people will go where this research and these products are available. Rick Perry had a stem cell procedure,but does not want others to have access to the same medical care he can get. Stopping basic research is one more way that making this country a theocracy is turning us into a third world country, where we need to let patients die because it is God's will.
Hate to tell you, but age is already taken into account when deciding if someone is eligible for a transplant. Try getting any transplant team to approve a kidney transplant for someone over 80. Virtually impossible.
I have to give this one to Genenut, because I have direct experience with a relative who received one of his father's kidneys when he was 18 months old. No additional issues beyond those normally associated with an organ transplant.
KOL is a troll who posts inflammatory idiocy just to see the reactions ..just ignore ..we know who has the REAL mental disability
Nature would let that child die and we can't fix that problem yet. The hard cold fact is that the child should not have been born if the parents knew ahead of time.
How many organs have you donated, Emily?
Obviously anyone with TWO kidneys is a selfish jerk. Perhaps you would suggest an organ tax?
Down Syndrome children are incorrectly formed and Nature would take them back if it weren't for the loads of cash, technology and effort on the parts of countless people dedicated to taking care of these unfortunate people.
When we gain the medical technology to make DS a thing of the past then we'll all dance and sing but until then the hard cold truth is that others, who have been waiting often for long periods of time, need those organs. No one is happy about it, I guarantee you that.
Some people are left to die because they just don't have enough cash. Perhaps this could be considered a form of "eugenics" also?
I am seriously upset by what you people are writing. So you are saying if you had any sort of disability you would want to be left in the gutter to die?? well maybe some of you should with your attitudes. The parents of this child love her and want the best for her LIKE ALL PARENTS WANT FOR THEIR CHILD! so what she has a mental disability??? Depression can turn into a disability so your saying if you were depressed or one of the members of your family were depressed you would and could deny them a transplant?? Ever thought of it that way in your sick minds?? EVERY child does not have the capacity to remember to take medication especially at three, that is what the parents are there for, so what she may need help when she is older to maintain her life?? Everyone does in some way or another even if they are perfectly "normal" oh yeah there is no normal just remember that when you are on your high horses. Your general perceptions of disability are completely and utterly sickening.
Something doesn't smell right! No transplant even from a family member? This doctor must think he is a god or something. I could buy the fact that healthier recipients would be favored but to deny ANYONE's right to give that child THEIR kidney is just totally wrong. I would do it myself just to spite the jerk.
x
I am really disgusted with society right now. I can't believe that people can actually think a person with a disability has no value in society. Who are you to determine a person's value? Only God can determine. And if you remember correctly, God loves all of his children. My son has a rare chromosomal disorder and I would do anything to save him if this situation arose for us. He has and shows more love, unconditional love, for people than anyone I have ever met. He has great value to me, my family and anyone he meets. I am just appalled at the person that said people should not have a baby if they know there will be a problem. No one is perfect in this world. No one. If God did not want these children in this world, he would not let them be born. If they had no value, they would not be born. People, please learn some compassion. If it was your child, maybe you'd feel differently.
Then they should go to another hospital. Many hospitals do not rejects based on the child's mental capacity. They will and often reject if there are concerns about the parent's ability to provide appropriate care for the child post transplant or if the organ is likely to be damaged by the medical condition of the child, which is the same for adult caregivers.
Follow Mia's updates by subscribing to wolfhirschhorn.org- Donations are also being accepted by reading the original article.
Referring to this situation as 'eugenics' is, imo, simplistic and short-sighted. Other folks with end-renal disease are not considered good candidates for a transplant for myriad reasons, most related to their survival prospects post-donation. These cases rarely garner public/media attention because the would-recipient isn't a child or cognitively impaired.
Caplan, above, presents points worth considering. What is this little girl's prognosis, even with a high quality transplant? To some, the answer is for this girl to find a living donor, apparently forgetting that a kidney is not a pint of blood, and living donation comes with a parcel of known and even more unknown risks. I realize her loved ones don't think in these terms, but the professionals given the responsibility of these decisions should.
Transplant centers have a lot of autonomy regarding who they dis/approve for transplant. Why has this family chosen to argue with this facility versus having their daughter evaluated some place else?
In closing, I think it's important to remember that transplants are not cures for kidney disease, but only a treatment. Home dialysis has been shown to be just as effective as a transplant - has such an option been considered for Amelia?
cognitive function was the ONLY reason used to deny her a transplant. With her condition she can live 20 -60 years longer.
Considering the SW who was there referred to her needing another one in 12 or more years and then another in 30 years, her prognosis with a transplant is good if the hospital will actually do the procedure.
If the transplant will give her 12 years or more and not allowing the transplant will kill her in a year or less I'd say refusing the transplant is eugenics and its disgusting (not to mention a violation of her ADA rights)
You argue that a kidney is not a pint of blood, and that the family will have to think about the donor. Amelia's family will be providing the kidney, and the hospital only needs to do the procedure. I consider it eugenics when there will be a kidney for her which will save her life, and the hospital refuses to operate. When I read her mom's blog, the doctor who spoke to her clearly stated that he didn't recommend the transplant because of the mental disability. There are people with Wolf-Hirschhorn Syndrome who live to be adults. I cannot see why Amelia is a case to deny a transplant.
Your example is not the same. I have bipolar disorder, a PhD, three master's degrees, two technical certifications--and have been told that if I ever need a transplant, I will not receive one, because of the mental illness. I decided not to be a donor then also.
The bottom line is that transplant organs are a very, very rare commodity. I see a good way of solving the problem, though, and it is the same as my recommendation for stopping most abortions...namely, the profit motive. Let the donors accept a fee, just as the doctors do. Appeals to altruism don't do all that much good...the profit motive works every time.
There are no guarantees one way or the other. The transplant MAY give her 12 years. No transplant will NOT kill her - but she may die from complications from existing conditions.
An Le---where is Amelia's family getting a kidney donor? It has to be a child, an adult's cannot be transplanted into a child. A child cannot make the decision to donate and another adult cannot volunteer a child to donate. Really? You need to not take people at face value. They are desperate and willing to do the unreasonable.
Livingdonor, your post is great. Autonomy is relevant. Attacking the people that live to help others is not the solution. They have a duty to protect the program so that many may benefit. If this child's family creates a situation where the program is at risk, larger problems will arise. Let the medical community investigate. They know the law (as they are guided by their own attorneys and I am sure Amelia's family has one). In the end, if she is a viable candidate, she will be on the list. But if for some reason they see her as not being as viable, there is no alternative. It is very sad, but unfortunately, we need decisions such as this one to be based on reasons other than money, celebrity status and networking.
No an adult CAN donate to a child even as young as a year old. This child can receive a kidney donated by a family member.
bencas - you need to get a clue. People have responded to you saying "an adult cannot donate a kidney to a child" more than once. AN ADULT CAN DONATE A KIDNEY TO A CHILD. There have been many such operations done successfully. The surgery might be a bit more difficult due to the size of the veins, etc. but it can and has been done!
As for whether the child should get a kidney or not, if someone in her family is willing to donate it to her and she is healthy enough-then I do not see why they should not be willing to do the transplant. Of course, they need to educate the family members who would be responsible for monitoring everything for her - advising them of all the things they will need to be monitoring and the extent of it.
Sometimes, I think we "intervene" too much when someone would die, and don't "let nature take its course". However, if it was my child, I would want her to have a chance to live, even if only for another 10 years.
Look, she may need one in the future, not now. What's the meltdown?
she needs one in the next 6-12 months or she will die. This doctor sentenced a little girl to a painful and preventable death just because she is cognitively impaired. That is one VERY slippery slope to proceed down...
Renal failure is a quiet, peaceful death. As toxins build, one becomes more and more sedated.
Or she MAY die. There are no guarantees one way of the other. That's why doctors call it "practicing."
So alcoholics can qualify for a liver transplant if they've been sober for six months, and yet this child can't get a kidney from her family? This, because she has a cognitive disability? WHAT?
MCAmom,
An alcoholic can quite drinking and not be an alcoholic. This child cannot become not disabled. Liver failure is almost never directly from drinking alcohol. It is almost always a combination of factors, especially hepatitis C.
Actually, an alcoholic who is not drinking is still an alcoholic and is considered to be in recovery. Alcoholics are just one drink away from recurring destructive behavior. It's not just as easy as being dry for 6 months for an alcoholic to get on a transplant list.
Many hospitals require MUCH more than just being sober for 6 months to get on a transplant list. For many places the person has to not have consumed alcohol for 6 months (not even one drink), they must be in a treatment program for their alcoholism/substance issues, and they must have started dealing with the issues that resulted in them becoming alcoholics to begin with. Good transplant programs have psychologists trained in organ transplant to perform the evaluations and not everyone makes it on the list. Most that do not are given a list of things that must be done in order for them to make list placement. It then becomes up to that person and typically their family/caregivers, if they have met the criteria to be reconsidered for list inclusion.
The process of getting a kidney transplant involves the exchange of one compromised lifestyle for another. Is she able to care for herself, given the complexity of her post transplant regimen? Not to mention the considerable discomfort of endless medical procedures.
she's 3, she isn't legally capable of caring for her self regardless of her cognitive status for another 15 years.... that is not a valid argument against transplant. The argument is life vs death. She and her parents want and choose life. They should be able to have that.
God bless America,
That was a completely rational and accurate post. A transplant recipient is not "cured". They instead trade an acute life threatening disease for a long term chronic disease.
I can see both sides. Fortunately, I don't have to make this decision. Who may lose out if she gets the transplant? Should that even be considered? How disabled may a person be before they should/shouldn't get a transplant? Lowered I.Q.? Massive brain trauma? Long term coma? I don't have the definitive answers and I don't know who does.
absolutely NOT. The decision should be based survivability. Simply being on the list the longest or being the sickest should have LESS impact on selection than best match with best likely outcome. Simply because someone "important" is on the list should NOT be a high value criteria. Not even if they are POTUS if there is a better match for someone else.
Her family is providing the kidney. She is not and they have not requested that she be placed on the wait list. No one is "losing out" by letting her get her transplant using a family donated kidney. The only one who will "lose out" is this little girl if the hospital keeps denying her a chance at life.
genenut, this article makes no mention of where the kidney is coming from. i assume the mom's blog makes that statement?
Mom's blog, the article on ABC, Huffington post article. Its in many other places. Not sure why MSNBC didn't include it in this one.
then that changes everything. it's a kidney that will only be donated if it's given to this girl so they should do it. the real question is what is going to happen when it finally fails and she needs a new one.
Often the donor must meet certain mental and physical health criteria to be eligible to provide a transplant. The mother must also meet certain compatibility requirements. Did she meet them all? We're assuming it was because of the daughter's health. It would be interesting to have more details from the hospital not performing the transplant and why. Right now we only hear the parent's side. The hospital can't say a word on the exact reasons due to privacy issues.
Something doesn't make sense in this story.
Mike
From what I could read, there was no donor at that point, the question was only brought up by the family in the form of 'what if it was a family member'. I didn't see anything to indicate that there was a donor identified.
The 'other side' issue is important though, because, as you stated, we only hear one side, and that side is very biased, which is not understandable because it is her family.
This. Is. So. @!$%#ed. Up.
I can hardly believe what the world has come to. It is such a terrible place.
Having cognitive impairment does not make one's life any less valuable than someone without any sort of disability. A three year-old girl should not have to die just because of circumstances beyond her control like this. She has as much of a right to live as anyone else, and anyone who would deny her that should be ashamed of themselves.
In a perfect world everyone who needed a kidney transplant would get one. News flash.... this isn't a perfect world. Not every life is equally valuable. For example, a person on death row, an accident victim in a chronic vegetative state, an electrical engineer, and the girl with mental disabilities. If only one person can receive a kidney before they die who would you give the kidney to?
In our imperfect world hard choices have to be made that results in some lives saved and others dieing.
They're not saying her life is less valuable. Believe me, if this was my child I'd fight tooth and nail to get her transplanted. If there's a family donor, I'm sure they could find a team to do the transplant. What the doctor's are considering in this case specific to her mental disability is how well the kidney will function. Medication MUST be taken without fail. Not a problem now, but what about in a few years when she could absolutely refuse to take it? And if her mental disability is profound enough, will she have the ability to convey symptoms of rejection? Not SIGNS of rejection which we all can see, but SYMPTOMS; things only the patient could know. I don't think it's right for her to be denied the transplant, but we can clearly see the reasoning isn't as simple as "she's mentally retarded."
Ken EVERY LIFE IS EQUALLY VALUABLE. those who believe otherwise are subhuman. And for the record, the person on death row would be approved where as this little girl was denied.
Genenut,
I am offended by your remark. Not every life is equally valuable. Most states in the US execute some individuals who are determined as not even worth living. I challenge you to provide even one instance in which a person on death row received an organ transplant.
To Dale3242 please see the link below. It clearly outlines how inmates, including death row inmates can and do receive transplant:
www.abcnews.go.com/US/story?id=90611&page=1
Genenut
"EVERY LIFE IS EQUALLY VALUABLE. those who believe otherwise are subhuman"
Your saying that those who believe as you do are more valuable than those who do not and have proved Ken's point.
Genenut
No a person on Death Row would NOT be eligible for a transplant.
According to the christian right (with are neither), life begins at conception. When is value established? Is a parent's life more valuable than someone who doesn't have children? Who determines this value?
Before wading with an opinion, I would need full access medical notes. I feel sorry for the medical profession. They are often castigated for their decisions by the public based on the information provided by family. The reality is that this information is often highly biased and subjective and, very often, just the tip of the information iceberg. The medical profession are rarely able to effectively defend their decisions because to do so would mean breaching patient confidentiality.
This mother clarified and confirmed at the meeting the ONLY reason the doctor would not do the surgery is her daughters cognitive status. This doctor is a scumbag practicing eugenics who needs to be sent packing back to peru where apparently this is acceptable.
Genenut,
You seem very quick to label the doctor as a "scumbag". I agree with Lynne. The doctor and the medical profession do the best they can.
genenut, the MOTHER confirmed what the doctor said. she wouldn't have any motive for lying now would she?
Also, I'm sure the doctor, knowing the mother has an equal medical education *cough*, explained every issue in full.
Some of you people need to get a clue. There are constantly people waiting for donated organs. The fact that it would be nice to give everyone whatever medical care they need doesn't mean it's physically possible.
Her family is providing the kidney, she is not and they didnt request that she be listed on the national wait list. Her transplant does not take a kidney away from anyone else.
That is not clear ... the article says... Even if???? as in hypothetical. At three years of age it would NEED to be another child donating the organs due to size.
no it doesnt have to be a child. Adults can donate to a child as young as 1 yr old. And in the mom's blog that started all this they have stated the kidney would come from family.
Genenut,
Just because an adult kidney has been transplanted successfully into a 14 pound child does not mean it is easy or common. Also, who is going to pay for all this? The financials of regular kidney transplantation are doggy at best.
Dale, the financial aspect cannot be a criteria for determining eligibility for ANY medical procedure. As to adult to child kidney donations, I know of two children who have had it done in the last couple of years. It happens and apparently more often than you are aware of.
Genenut: I get what you are saying. At the same time, there are a couple things I would like to point out: 1 - you are taking the word of a distraught and angry mother (and understandably so) in her blog. Many times when a family receives bad news from a physician, they shut out everything else said afterward. Which is why it is very important for the physician to have follow up appointments to be sure the family understands what was said, heard the follow up and answer any questions. While the physician may have said I am not recommending her for a donation because of her mental capabilities, he may have went on to explain why this was an issue. AND, it's very understandable why the parents wouldn't hear that, agree with the physicians decision, etc. All that said, I don't know the physicians reasoning behind why her mental capabilities ruled her out for the receiving a transplant. I would have to know that BEFORE I could agree or disagree with the physician on that decision.
2 - While adult to child kidney transplants do happen, size does matter. In the case of this child's syndrome, there is also growth retardation, so, she could potentially NOT be large enough to receive the adult kidney (depending on the size of the donor kidney). Size could potentially not be an issue also. Just an example - one of my friends has a daughter that is just about a year old. Her daughter was born with biliary atresia that failed the initial bypass surgery - she got a liver transplant about a month ago. While waiting for her liver transplant, her kidney began to shut down due to the massive stress they were under while her liver was failing (right be fore her surgery her bilirubin count was ~36, normal is less less than 3). She is now in need of a new kidney. She is a year old - you would think that she would be big enough to receive an adult kidney, however, due to the complications of her illness, she is very, very small - and can't receive an adult kidney at this time. In fact, part of the reason it took so long to get her a liver transplant was because they had to wait for the right size lobe to be available (unfortunately, that meant they had to wait for another child to die). The point I'm making is that you don't know that this child would be able to accept an adult kidney.
3rd: Earlier you (I believe it was you, but I could be wrong) stated that this child will die in the next 6 - 12 months without a kidney. That's not at all what the article says. According to the article, the mother asked so, when her kidneys fail in the next 6 - 12 months, you won't give her a transplant. This means that currently, her kidneys haven't failed. There is probably evidence that they aren't functioning properly (thus, the predicted failure in the next 6 - 12 months). They may not fail in the next 6 - 12 months. When they do fail, she may be a good candidate for dialysis. Not that dialysis is a hugely great alternative (to be honest, studies have shown patients that receive dialysis then a transplant live less time than pts that bypass dialysis and get a transplant, so - it's not a great alternative). Dialysis is hard on a person - physically, mentally, etc., etc.
5th: You keep saying that the family is donating the kidney. That's also not exactly what the article says, although, admittedly, that could be more plainly stated in other sources. The article says "Even if..." which means that there is a chance that the family either isn't able and/or willing to donate the kidney. Though it does imply that they've at least considered it.
All that said, I would really need to see this particular child's medical records and have all of the information to determine if I agreed or disagreed with the decision not to recommend her for transplant. I can understand the issues brought up in the article, and, yes, those issues need to be addressed with EVERY transplant candidate. However, if these issues can be satisfactorily addressed, then mental capabilities, in and of itself, shouldn't be an automatic rule out for transplant.
True. But in this case a family member is the doner. Maybe you think that because the family member has volunteered to give up an organ they should be required to donate that organ to whoever is the next highest match on the list.
After all, they've already decided that they'll donate, so we should require them to follow through...
We should stop doing all transplants since they just makes the aptly-named Genenut crazy in the head.
Get your righteous on girl. I'm sure you'll have to step over 5 of so homeless people on the way to the "transplants for all, including those with life-threatening degenerative diseases" rally.
Seriously. Get a grip. You're going to hurt yourself and then you'll be taking up space at the ER that could otherwise be serving a more deserving child whose picture is taken to maximize their cuteness. Because, of course, just because there isn't an issue with the shortage of kidneys in this case, there sure as h*ll is a shortage of facilities and surgeons and staff to perform the surgery. Or was there too much high pressure blood blocking your neural pathways to think of that?
PEOPLE do some research! The donor kidney is not placed where the original was...its placed in the lower belly area...therefor it does not matter the size!! This child should be able to recieve a family donor kidney PERIOD. She should not be rejected for the list either!
Where can I find the moms blog?
AJ: Size does matter, even though it is placed in the lower abdominal cavity (the abdominal cavity is very full even without the new kidney put in, so you couldn't put a kidney in that was so large that it compromised blood flow to other organs). The size needs to be in the proper size range for her body. That said, size may not be an issue in this case - depending on her size and the size of the donor kidney. It certainly isn't going to automatically rule out the transplant.
Also - size wouldn't be considered unless there was a match and they were looking to see if it would actually work for her (beyond just being a good match immunologically).
There was a link to the mom's blog in the article (not sure if it's still there).
Before I got my transplant, even though it was a live donor, I had to be approved for that transplant, and that included making sure that my lifestyle matched the requirements of maintaining the transplanted organ. If I didn't meet those requirements, I would not have gotten the kidney, again, even though it was a live donor. If the potential donor is deemed to not be capable of managing their life after the transplant, then they would not be eligible. The doctors statement may have been a matter of 'look, we know that this person cannot meet the post transplant procedures, and instead of wasting our time with the decision making process we are just going to state it up front'.
I consider it triage. I'm sure lots of patients die every year due to lack of kidneys for transplant. I would think quality of life should be a major consideration for who gets a kidney and who doesn't.
Heartless you may consider me, but there it is.
Her family has offered a kidney from the family for the procedure. She is not and they did not request her to be listed on the national list. This isnt taking a kidney from anyone on the wait list.
Genenut
repeat yourself much?
only when the majority of posters failed reading comprehension 101 ...
so then you can quote the part of the article on THIS page that shows the family is providing it? cause you can't comprehend something that's not there to be read. it's not the poster's fault, it's msnbc's for not reporting that part.
Wow. This would covered under my socialized health care here in Canada as a necessary life-saving procedure, provided a match could be found.
Hey, USA, I thought you wanted people to believe you were a Christian nation?! Seems like socialists care more for their fellow citizens than Christians do.
Yeah right Nicholas, and I'm sure they have kidneys for everyone who needs one!
Nicholas,you are obviously not a mentally disabled 3 year old,so I doubt that your perfect Canadian healthcare would do much aboot it either,eh?
Didn't a Canadian couple just bring their treatment-denied child to the U.S. recently? Yeah, they did.
Nicholas M, I am Canadian. From experience I can tell you that you are wrong. The government sets limitations and doctors must choose (covertly) who gets care and who doesn't. Why don't you check into the WH group in Canada?
wes,
Actually several US hospitals also refused to treat the baby, because the baby was going to die anyways. The question for the hospital was quality of life, where the determination of the hospital was that the treatment required would have not significantly extended the life of the baby and would have increased the potential suffering of the baby at the same time.
Nicholas
If the number of donor organs matched the number of people that needed those organs, then that would be the case, but the problem is that the waiting list for organs, pretty much around the world, far exceeds the supply of donor organs. At that point, some form of triage is required to determine who gets those organs. The rules for donor recipients are pretty clear actually, though there are some slightly different rules for live donors, a lot of the criteria used is the same.
Bman and Ken, I guess y'all missed the part where they won't even do a living donor transplant from a family member. That's not taking a kidney away from any person who needs one.
I trace this back to Terri Schiavo, actually. The standard was set that brain damaged people need to go on and die. This is just the logical next step, and there will be more to come.
Laura,
Terri Schiavo was brain dead for over a year. Not brain damaged, brain dead.
there's a big difference between brain damaged people need to go on and die and brain damaged people who can't stay alive on their own aren't going to be kept alive by a machine.
This isn't about eugenics, it's a combination of a genuine need to triage a scarce resource (organs) and a doctor who seriously needs to work on his bedside manner. It's not like we can walk into the kidney store and order up a new one (or, in this case, a new one every decade or so).
Stand, for a moment, in the shoes of the people who have to allocate organs. You have a list of thousands of people. Thousands of desperate people who are running out of time. And you have one kidney. On the one hand, you have a child, say this girl now age 12 (we're assuming that one of her relatives is a match and has donated a kidney), who has a serious genetic disorder. Who has already had a transplant. Who you know will need another one in the future. And you have a previously healthy 12 year old who is experiencing renal failure due to an adverse reaction to anti-biotics. You can, at best, buy time for the former, but you can cure the latter. Whom do you choose? Because you have to choose one of them.
Was the doctor an idiot to say what he did? Maybe, but in this case the truth is a hard thing. Sooner or later, she'll need a kidney that a relative cannot give. And when that day comes, no organ program in the country is going to give her a kidney with the constellation of health challenges that she has.
The family is providing the kidney, the doctor STILL refuses to do the procedure. She is not and will be not be listed on the national wait list per the family's request. And 12 years down the road is 12 years down the road. Her need is now. the doctors refusal is stupid at best and eugenics at worst.
Refusing the procedure now is sentencing her to death and is a violation of her rights.
Genenut,
No one, but not one, has a right to receive an organ donation. We all are born with our own set of organs. It is our responsibility to take care of them. If through bad luck or abuse we need a replacement, then we should be honored if someone donates an organ we can use.
refusing medical treatment due to a persons disability and only due to their being disabled is a violation of her rights under ADA.
Genenut - where were you when Terry Schiavo needed an advocate. Removing in-place medical care and support is murder. However, not intervening in the first place is totally ethical. And, by the way, how much of your money are you willing to contribute? So, the family may be able to locate a donation organ but do they also have the cash to pay for the current and all future treatments? If not, then that ends up coming out of your pocket, my pocket, everyone's pocket. We will all die. Ain't no stoppin' that. Ethical decisions require providing the most benefit for the most people. Sad to say, America is all about "me," the individual - just as this case shows. I have an opinion about this case, which may be understood after this post, but I'm not going to state it explicitly. Every life has value and as fellow members of the species, we have responsibilities to our fellow beings - human and other. But applying the most radical procedures available is not the most ethical decision in all cases. This is a very sad one and the parents are getting mileage out of the media attention. What did you do today, buy, eat, use, that caused strife or even death for another human? We are all in this together. And most of the time it isn't easy to do it well.
Genenut, she has to have the ability to continue treatment after the transplant, not just get through the initial surgery. The anti-rejection meds HAVE to be taken at specific times in specific orders. What happens when she gets the ability to move into her own place if possible? Or would you rather her parents be 24 hour caregivers for the rest of her life, however long that is, after the transplant? At some point, she's likely to refuse medications, like every child does. But with her other medical conditions, that refusal once or twice is likely to be just enough to cause problems.
I am all for donation. I've been signed up as one since I was able to and had a family member who received a kidney several years ago. However, she passed 6 months to the day after the transplant due to other problems from the underlying illness, high blood pressure from the Polycystic Kidney disease that initially destroyed her kidneys and possibly the blood thinners she had to take to prevent clots. She had a MASSIVE stroke.
Every doctor has to make horrible decisions, that's just the nature of the profession. In this case, it would seem he made the correct one...at least to me.
So 15 year old's move out now? Didn't know that!
Genenut, I can tell you care passionately about this case, but the article does not say that a family member has been found who is a match and has agreed to donate an organ. The mother claims she asked what would happen IF a family member agreed to donate a kidney. It is by no means certain that any of her relatives is A. a match and B. physically healthy enough to give up a kidney. Being a living donor, while an extraordinary act of selflessness, is NOT without risks and the person who gives up their kidney has to make permanent lifestyle changes assuming there are no complications from surgery. "Living" donors have more than once become cadaver donors due to surgical complications.
I am not saying the little girl doesn't "deserve" to live, but this is not a black and white "evil doctor vs. innocent child" argument. There are a LOT of shades of grey to consider. Also, to be very blunt, we ONLY have the mother's self reported version of the conversation. This wouldn't be the first time a desperate family member "selectively listened" to what they were being told. I would expect a mother to fight tooth and nail for her child, but I simply do not believe that the conversation as reported is accurate. It's not a pleasant truth to confront how one sided the story is, but there is absolutely zero supporting evidence of her claim that mental disability is the one and only reason her daughter is being declined for transplant surgery. At a bare minimum, with her myriad health challenges, there is a very significant probability that she would die during surgery. Given the mother's behavior thus far, I wouldn't accept her child as a patient, all other considerations aside, because of the near certainty that mom-zilla would sue if the surgery didn't have a fairy tale ending. No doctor wants to take that on.
If the parents are willing to pay for the transplant and set up a trust fund for life time care I see no problem with giving the child a transplant. If the parents want the U.S. taxpayer to spend the millions necessary for the procedure and care then I say NO.
where is your trust fund for your future care? If you dont have one then shut up the glass walls of your house are very fragile and prone to breaking when you start through those large stones.
If we can provide extensive and expensive medical care for convicted murders on death row we can provide care for this INNOCENT little girl.
wheels... I see where you are coming from and to a degree I can agree.. however life saving medicine should not be based solely on the all mighty dollar. There is no indication of insurance status nor who would be paying.
wheels460,
You are correct. At present, organ transplants go to the rich and well insured. Genenut is not well connected with the real world.
And you dale must be a republicant... only perfect people deserve rights and the ability to live.
wheels 460: You are correct to point out that the costs incurred in transplant surgery and the life-long regimen of expensive medication must be considered. If these are to be paid for at public expense, then the doctors' decision is the morally ethical one, no matter if the family provides the organ.
MY sentiments exactly. Who is paying for her medical care at this time. Her family or the American Taxpayer. A disabled child receives Social Security for life and their parent receives Social Security until age 16 to care for them and if they are unable to care for their own self physically at that time it continues for life. I do NOT begrudge this as their are circumstances which this keeps a family at home and fed. However I do not believe the taxpayers should pay for extensive and expensive medical care such as multiple organ transplants and anti-rejection drugs etc. If the family has insurance and can pay for or get donations for any and all co-pay deductibles etc. Then let them proceed but keep my tax dollars for other purposes thank you.
it is a bit twisted isn't it, when a doctor chooses the fate of a disabled girl by tripping over his own disabled judgement?
please correct me if i am wrong, but no law requires we ever donate an organ. in turn, are we not afforded the right of decision to whom we donate, should we so choose?
they family members so willing to lay themselves on risk's path should certainly be granted the right to offer a kidney for their loved one so long as any hope exists it may help. how dare a doctor refuse!
the girl may die within a year, but it certainly isn't for any of us to decide the girl's life-value during her remaining meantime. that value precedes our intervention and is inherent regardless our efforts.
give her life doctor. because you can. because you should. it is your oath. isn't it?
So let me make sure I'm clear on this. A mentally retarded child with an incredibly supportive, loving family can't get a kidney transplant even when the family is providing the said kidney. But a "cognitively average" individual can. Huh. Interestingly, I know a LOT of cognitively average individuals who have a pretty piss poor quality of life due to the poor choices they make with their average cognitive ability (i.e. smoking, overeating, inactivity, drug addiction, dysfunctional relationships...). And yet doctors feel that they have the right to define quality of life. Unreal.
As a pediatric transplant nurse I know first hand all about these types of cases, RARELY is anyone ever denied a transplant, especially when they have a supportive family and even if they are mentally or physcically disabled. NO one with a drug addiction is allowed a transplant, they must go through rehab first. We would never transplant a liver in an alcoholic unless he/she stopped drinking. Overweight individuals must have a BMI of 35 or less.
This is common practice across the board, no transplants for the severely disabled. They cannot consent, they cannot manage their medications and there is no way to guarantee the after-care if the parent dies.
The child in question will not be a quiet, socially inept child with a disability for algebra. It will be a bedridden, unconscious life that will need 24hr a day care to combat the brain, lung, kidney, muscle and gastrointestinal disease associated with this genetic process.
It would be easier and more humane to allow the poor suffering child to sleep and die form kidney failure than to prolong it's short pain filled life for the ego and self-fulfillment of the parents. If you have never had to make this type of decision, you should just keep to yourself.
Dude, you don't know what you're talking about. Do a little research about Wolf-hirschhorn and about this particular child and then come back and discuss facts like a respectful person, please.
And for the record it's HER, not "it's".
I don't believe in getting transplants. i know several people who have children who have been transplanted. The children are miserable and so are the parents. Their life revolves around medications and doctor visits. I feel sorry for them and I can almost hear them all wondering if it was worth it. I can understand the desperation in not wanting to loose someone especially ones own child. Death is still a fact of life even tough we may not like it.
i am sure their are those who feel transplants have helped people. Personally i would not ever consider it for myself. As far as my child goes mentally ill or not I am not sure I would want them to suffer the way I have seen other children suffer who have transplanted organs especially the heart transplants.
I had a friend who was a very talented musician with kidney failure. His parents were quite well off and wanted him to have a transplant and he was on the list but every time an organ became available there was always something that prevented it from happening. He came to see me after his last time of not being able to receive the organ because his blood pressure was too high. He confessed that he did not really want to go thru with it and that he felt like he just wanted to get off the list. He did not live to see 40 years old. He died in the middle of a rehearsal doing what he loved playing music.
I miss my friend. He lived his life with all the muster he could. He did love his life although short; he lived good. I think I was one of the only ones who understood why he did not want a transplant and I am glad I could give him support for his choice. I know he is one of my angels today. RIP Billy!
Transplants are expensive and difficult to obtain. Afterwards, the health issues that accompany the transplant are harder to manage. The child become more vulnerable to additional health issues such as cancer, diabetes, high blood pressure, and cirrhosis because of all the medications the child needs to take for the rest of their lives to prevent the body from rejecting the transplant. Not to mention the medications the child is already taking for the original disease or disorder will probably need to change because of increased sensitivity and a more chance for reaction. The reaction to medication can damage the transplant, causing the need for another transplant and the likelihood of death before another transplant could be obtained.
The transplant will further reduce the quality of life for the child, not improve it.
The transplant will not cure the child.
The transplant will increase the suffering of the child.