When it comes to any child no matter their age or if they have disabilities or not: if they need a transplant that is all that should matter. Shouldn’t it?
That is what I would think. But the Children’s Hospital of Philadelphia doesn’t think so when it comes to Amelia “Mia” Rivera. Mia has Wolf-Hirschborn syndrome, it is a complex genetic disorder mental and physical impairments. Due to this she is in need of a kidney and if she doesn’t get one she could die within the next six months to a year.
Her family is more than willing to donate a kidney to Mia themselves. So what is the hold up? The hospital is going along the lines not to directly say that they refuse to do it, but are saying that they do not recommend the toddler to have the transplant due to her disabilities.
Mia’s mom runs a blog and you can see exactly how that story plays out
here . It is such a heartfelt story and also makes you so angry at a Children’s Hospital that is there to help children and is refusing to help this child because she is mentally disabled. Since Mia’s mom posted on her blog about this story over 20,000 people from 15 different states have signed a petition to get the Hospital to give Mia her kidney that she needs.
There is so much going on with this story that is wrong. One of the other excuses that they hospital gave was that she was mentally retarded and if she got the transplant would have to take medicine for the rest of her life and who would get her to take it after her parents were gone.
I don’t know about you, but I have known many Down syndrome kids (just one of many forms of mentally disabled types) that are smarter than some of the people walking the street today. So what is this hospital coming up with their theories and excuses? I don’t know, but I think we need to show the hospital that they aren’t as powerful as they think they are and have the write to play God when it comes to who they will or will not do a transplant or services on because they have a mental disability. One parent when their child is in danger can be very strong and empowering, but when we join together as a team we can take on the world and make a change. With that said join me and sign the
Petition and get this hospital to do the right thing, and maybe a little egg on their face when it shows that the outcome is on the positive side instead of their negative thinking.
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Comments (19)
I read this earlier this week on Facebook, and the hospital's attitude is appalling.
@xcntrychicka@xanga - I absolutely agree. I saw this a few days ago on Yahoo. My husband and I discussed it and were also appalled. I am shocked that the "experts" on donation (those who I read their position on this) seem to agree with the hospital's choice, and that it was simply worded insensitively.
The thing that on many levels bothers me most about it, is the concept that people in charge would place more value on this idea of perfection than on the value of life.
No one knows what tomorrow may hold, it is promised to no one. So for them to say that they don't think she'll survive long enough to warrant the transplantation? It is meaningless. As the mother of two children, I know I would do anything even semi-reasonable to save their lives. I hope against hope that this family will find a moral and ethical hospital and surgeon who will grant the transplant.
In time.
Isnt this illegal!? You cant withhold a lifesaving operation over someone's mental abilities. This is so fucked up. A prisoner can get free healthcare but a child who needs a kidney & has access to one is denied the help because of her intelligence level?! I hope the hospital gets sued & slapped in the face with every charge & crime possible!!
I am the mother (as most of you know) of a child with Down syndrome. Sadly, this happens far more often than most realize. I not only signed the petition, but I blew up CHOP's Facebook page and emailed the idiot doctor that refused based on her "mental" incapacity. I am so very proud of all the people that took a moment and expressed their outrage. EVERYONE deserves a chance and how dare that man say any differently.
I wish everyone would stop bashing the hospital and providers that made this decision. you don't have all of the medical details of this little girls case or the reasons why she is ineligible for transplant. There are many reasons, any human, could be ineligible for transplants ranging from age to ability to care for themselves post transplant, to the underlying conditions a person has to their mortality rates.
While I don't know the details of her disease, sugary could be very risky or her disease might harm her new kidney...The transplant committee does not make these decisions lightly. While I don't believe denying this little girl based on mental capacity is right, I understand her medical decisions are made by a highly educated team of doctors who swear under oath to do no harm and I do believe they have made their best judgments on this case.Wow...just wow...
wow
@autumn__sunshine@xanga - Having worked in a hospital for over 10 years, the hypocratic oath has very little meaning to anyone. Do no harm? What about drs who help people with incurable fatal diseases to die peacefully? Some would consider that a harm. What about drs who perform abortions? Some would consider that a harm. What about drs who practice protocol-over-patient? I consider that a harm (I want medical consideration to be about me alone, and not about an average). The list could go on. No one who works in any medical setting will use the hypocratic oath as a comfort that the sacred physician would never hurt you.
While we don't know every little nuance, what we do know is what the mother has been told. If they had a good reason, do you not feel they should have made that clear?
And if the risk is to the family alone? Their own kidneys were offered.It isn't like we need two perfect kidneys to live a healthy long life. If her family thinks it's worth the risk (to themselves) then why can't they try to preserve the life of their child who WILL die if she doesn't receive one. And even if the risk is to the little girl herself, how great a risk is it if her mortality is guaranteed without the surgery?
I understand your need to play devil's advocate here. But I think in this case, it is argument for the sake of it.
@sarahsmurfette@xanga - This is not related to the original article but your comment. Why is it wrong to have physician-assisted suicide?
The syndrome the child has limits her to an average lifespan of about 30 years. Besides kidney failure, there is heart failure, there are seizures and other possibly life threatening complications to the syndrome. The petition does not point out whether it is the parents trying to give their own kidney or if they want her to receive a stranger's. If the parents want to give her their kidney, I don't see why they won't do it, and I honestly doubt this is the case, because they always allow it. I've seen 60+ year old that have gotten an organ from a relative, where they wouldn't have been allowed to get on the waiting list, or if allowed would have had so many people ahead of them based on priority. If the parents to not intend to give their own kidney, to allow her to receive a stranger's, would open up every single hospital, that has denied it to the elderly or disabled, to massive lawsuits. They will and cannot establish such a precedent. The same laws that deny her this life prolonging, can't say for how long but based on studies, about 25 years more, procedure is the same one that has given hearts to children instead of older people on their deathbed.
@Shinbi_Belldandy@xanga - I'm pro-capital punishment. I completely understand this sentimentality. Murderers should redeem themselves by giving their lives to prolong others'.
@In_Anguish@xanga - I don't believe that it is wrong for physician assisted suicide.
And I don't expect everyone to agree with my opinion. thats okay with me.
@In_Anguish@xanga - Boiled down, the argument against assisted suicide is this; the moral consensus, society’s compass, is a tricky thing. It might take centuries to properly align. Medicine’s moral lodestone is that all people are deserving of life. Individual physicians are certainly free to prescribe whatever measures they deem necessary in accordance with their patients and their conscience. But to officially sanction assisted suicide is to tip the balance. In a generation the precious standard is lost. Some doctors or bureaucrats not bound by conscience take the ball and run with it.
Suddenly a minority like the Jews are no longer legally entitled to equal protection. Suddenly the mentally challenged are sterilized without their consent. Suddenly the poor of a certain ethnic minority is subject to secret unethical medical experimentation, like blacks in mid 20th century America being exposed to higher doses of radiation. And then it takes decades for the consensus to get properly reset.
The same argument can apply to abortion on demand.
That’s about the best I can state it.
@autumn__sunshine@xanga - This is well said. This a nuanced reply. This is seeing the fine lines.
Sorry, but I'm pretty sure the family of this child did not go to medical school for years and years. It could be quite possible that she could die on the table with her disability. However,
Ido not see any reason for them to reject this operation-- sign legal forms and get the parental consent, and nobody should be unhappy.
>>Just like to point out that more and more people are rejecting people with mental disabilities like this. Hitler, anybody? Anybody?........
@olopocram2@xanga - This is what I was wondering. If it's from a stranger, fuck no she shouldn't get a kidney. SORRY, but people with functional bodies will receive a donor's organs before anybody with a disability. That's just how life goes.
However, if it's a donor from a relative, then I don't see why they can't sign consent forms and let their child live the lifespan she could have.
this hospitals attitude is awful. i can't believe that!
That hospital is the last place I would want to have my child undergo surgery of any kind... they already said her life is worthless to them. Why would you even think of wanting to force them to put your kid under the knife... ??? Find another hospital. One that values the child's life.
Could it be that the hospital also doesn't want to give her the organ because her physical condition might make it harder for her to recover normally?
I mean, either way, it's life-saving surgery, and the family should get it if they want it (and if the organ is available.)
But, also, I do understand the hospitals' view; maybe they don't want to go through with the surgery because if the child does not survive it, then the family has just paid a ton of money for bad luck, and hospitals also care about their reputation that deals with life-or-death cases.
Having a disability should not knock someone off a waiting list UNLESS it is because the risks of a transplant procedure greatly outweigh the possible benefits.