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The Doctors at CHOP

Someone sent this story to me.  It's about a little girl named Amelia who needs a life saving kidney transplant and Children's Hospital of Philadelphia won't do the surgery because she's "mentally retarded" (their words, not mine).  I read further and found that the family of this girl is willing to donate the needed kidney and CHOP still won't perform the surgery.  The hospital used the excuse of "quality of life" to justify their decision.

I just found this absolutely appalling.  This is someone's child who is sitting there in a stroller sleeping peacefully while a bunch of arrogant doctors (and a horrible social worker) tell her parents that they don't see any value in continuing her life.  They're willing to throw her away like a piece of garbage.

"This is hard for me, you know," says the doctor after he's told her parents he won't perform the surgery.

I really don't believe a word of that.  But, for argument's sake, let's say he's telling the truth.  If he thinks it's hard for him, how does he think Amelia's parents feel????

I can only imagine that when the doctor left that conference room he said, "Whew, that was a tough conversation.  I hate when I have to do those.  Who's up for lunch?"

I also imagine that Amelia's parents had to look into their precious child's eyes and say, "They think your life is worthless.  We failed - this time, but we're not done fighting for you.  We think you're valuable and we think you're worth saving."

Wouldn't any parent say that to their child?

How can this be happening in this day and age?  How can doctors sit there and play God and decide who gets to live and who doesn't?

I'm stunned.  There are groups out there rallying to stop abortions - but no one is rallying for Amelia?  I passed a church today with 50 little white crosses in the yard protesting abortions.  Their time would be better spent protesting the treatment Amelia (a living, breathing child who is already born) is receiving.  There are groups that try to stop people from pulling the plug on loved ones who are clearly brain dead - but they could care less about Amelia?  Amelia may be developmentally delayed, but maybe she needs to be in a coma to get their attention!

If you're going to call yourself pro-life, then you'd better be willing to back up ALL life.  I'm pro-choice and I have a problem with this, so pro-life people should really have a problem with this.  (I'm not saying that pro-life people don't care.  I'm saying this is actually something we have in common and could protest together.)

Surely Amelia has as much right to life as an unborn fetus or a brain dead person hooked up to a machine!  Where are the people rallying for this girl and other children like her?  She's a living, breathing human being who has family and friends who love her dearly and she's just been told her life is worthless.  How fucked up is that?

After reading many of the the comments to the original post by Amelia's mother, I realized that this is not an uncommon occurrence.  I think this is deplorable and I'm ashamed that I didn't know about it before now.

I know that most of my readers are parents.  Imagine if this was your child being denied life.  Wouldn't you want everyone to know?  Spread the word, would you please?

Here is the petition to sign to allow the kidney transplant.

UPDATE HERE

97 comments:

  1. Here is a link to the online petition to get CHOP to change their decision. This is deplorable.

    http://www.change.org/petitions/executive-vice-president-and-chief-development-officer-allow-the-kidney-transplant-amelia-rivera-needs-to-survive#

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    1. Anonymous11:37

      Please be sure to include your social security numbers with that petition so the child's doctors and long term care givers can bill your for this child's long term care far into adult hood and old age. Also the child's lawyers also want to sue you all for needless pain and suffering over rest of his/her life. All the bleeding hearts out there forget that God has actually been PRO death for thousands of years more than you have been pro-life.

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  2. So what's next. . .an autistic child can't get surgery because of quality of life. We special needs parents have to constantly fight for our children's rights.

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  3. I have to agree completely. This is the first of I've seen of this story, but I will share it on FB and Twitter. The sad thing is not just that pro-life people aren't screaming about this, but that pro-choice activists aren't either (except for you)! Those who would fight tooth and nail to save a convicted murderer should be even more willing to give this little girl and others like her a voice!!! I hope her parents go immediately to another hospital and find a doctor with a heart who remembers that Hippocratic oath he/she took!!!!!!

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  4. I am pro-life, and this infuriates me. I am a mom, and this infuriates me. I am a human, and this should infuriate every human.

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  5. This is disgusting on so many levels... my 6th grader is very involved with buddy program at school that pairs them with a special needs student, I cannot begin to tell you how much joy and friendship MY child has experienced with her buddies. Not really sure how that morons that made such a decision can sleep at night...

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  6. This is sick. I'm pro-life and I am outraged! I will be sharing this!

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  7. Wow!! Did this doctor go to the Hitler school of medicine?! That is just sick to think that a doctor/hospital board would approve the denial of an organ to a child just because they are mentally challenged! Who is standing up for this child?! Where is the justice?

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  8. So go to a different hospital, I can't imagine any parent stopping the fight just because the hospital refuses. If the insurance is willing to pay, or the family or whoever, then I don't see why they have a problem(I'm having a hard time getting the link to load so I haven't read it yet). The kidney is from a family member, so there shouldn't be an issue. I agree this is a HUGE problem, and should definitely be resolved ASAP. I can't see how they can refuse them service if the family is willing to pay and the kidney is ready. I would keep hunting til I found a hospital that would do it. (within reason of course, not talking about a back alley somewhere, a children's hospital obviously)

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    1. Not Everyone has the resources to go to another hospital.

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    2. CHOP is the number one children's hospital in America for almost every specialty.

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  9. Who are these doctors to determine this child's quality of life?

    I don't know very much about Amelia's condition, but what I read about it doesn't lead me to believe that she is incapable of love and being loved. Isn't that the most important thing? I've known several developmentally disabled kids who led happy lives to their capacity to do so, and were a joy to anyone who got to know them. Are these doctors saying that Amelia is not capable of that?

    And kudos to you for calling on the pro-life movement to rally to Amelia's defense. If it's wrong to discriminate against a fetus, it's certainly criminal to discriminate against a person who's already alive and growing.

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  10. Pro life means respect for life from BEGINNING to END, not just the first and last nine. It disgusts me that parents have to fight this fight. But they are amazing advocates!

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    1. Anonymous11:44

      Lets try and experiment Jen. For a week or more straight feel free to sit in an adult diaper or lay in a bed in your own shit waiting for someone to come change you. Then come talk to us, because that may be the rest of this child's life.

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    2. Anon, but that is not the only thing this child's life is about. If that is what you boil Amelia's life down to, well, I am just sad for your outlook on life.

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    3. Anon what makes you think she would be sitting in her own shit for a week if her family loves her so much to fight for her to be willing to give her one of their kidneys what makes you think they would have her sit in her own filth? I've known many special need children and adults that are very well cared for and are being supported medically mentality and emotionaly by their families. So if you do not know 100% how this little girls life would turn out please stop posting your ignorant comments

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  11. As a Mom of a special needs child I am not shocked by this. We were told by our insurance company they would no longer pay for physical therapy because there were no "marked improvements " whatever the Fu** that means.

    Thank u for writing this and bringing such issues to the attention of others. I am beyond appaled by this. Sometimes I wish the Doctors and big fat insurance companies could live my life for a day and tell me whether my son is worth the time and effort. If it were there child or grandchild maybe they would feel different.

    My son has Cerebral Palsy and a label of "mental retardation" by the school district. Everyone who meets him feels forever charged by his sweet spirit and dimpled smile. It pisses me off that this is happening to Amelia and her family. I encourage all of you who read this
    Blog or comment to quit talking about the issue and help to do something pro active to help Amelia and her family.

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  12. Disgusting is the word that comes to mind. Punch the doctors in the throat AND kick them in the shins. Shared this on FB, and will be signing the petition!!

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  13. this is a punch well deserved. I cannot even believe this.

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  14. This is ONE side of the story from a very emotional mother. There is danger is creating a rallying cry without knowing both sides of the story. A lot more goes into organ donation than just a flippant "oh, no kidney for her." CHOP is one of the best children's hospitals in the country and I guarantee that this decision was not made lightly.

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    1. Anonymous09:31

      Thank you for saying this. Organ donations are in short supply and sadly, they have to put restrictions on who can receive them. Amelia's condition is only one of many that would prevent transplantation.

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  15. I find it infuriating to see all these people jumping on the bandwagon. Chop saved the life of my child twice, disabilities and all, With 2 open heart surgeries. They never once said, "because she may not have the best quality of life, we choose to not do the surgery". There were many times during our stay there that I may have disagreed with methods and decisions. Should they have denied us surgery, I would have gone elsewhere. I would never have stopped looking until I found the savior who would do the surgery. I pray for this family and hope that she stays safe and well. There are several versions of this story out there right now, including one that says that she may need surgery in the future but not at his time. Yes, I am angry when I hear this version of the facts, but there are 3 versions to every story. I am sure we would here CHOPS story should they be legally allowed to discuss this situation.

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    1. Why then, allow Amelia to have the same chances at life that your child has had? The article stated that Amelia did not need the transplant surgery earlier but needs one now.

      And did you ever think that some parents do not have the resources to go all over the country to find a surgeon?

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    2. There are several top rated children's hospitals in Philadelphia. They can walk next door. St. Christopher's, DuPont...

      I just find this entire story sad. This blog was posted by a mom in crisis. In turn, people have bashed a hospital when they should be questioning the doctor.

      I have sat in that same conference room several times to hear the news that your child may not survive. There are other factors here that are not being brought to light simply because they are none of our damn business. The child has a right to privacy. I hope that she gets the surgery, but I also hope that people take in to consideration that these original comments were made by a mom in distress. Many of you are calling for an end to CHOP. Millions of us depend on chop for the survival of our own children. Now I must go, I need to sit in the CICU for the 120th day In a row.

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  16. I'm a nurse and I'm going to play devils advocate for a moment. I feel like we aren't getting the full story here. Perhaps this child is profoundly mentally retarded, doesnt respond to caregivers, and is essentially in a vegetative state. What if the matching familial donor is a parent to three small children. Is risking the life of the parent/donor worth possibly continuing the life of the child in question? Are there other health problems that make the recipient at high risk for rejection? Is the donor another healthy child in the family? Before I would start judging the ethics of the surgeon and the Hospital, I would want more facts.

    Whenever the life of a child is in question, people naturally react with emotions first. It's human nature, it's understandable. Before we start burning doctors at the stake, let's get all the facts. If the facts say he's making a biased decision, based solely on the mental capacity of the child, then I'll gladly light the match.

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    1. I suggest you go to the links and read that this family is willing to donate a kidney, therefore not taking a kidney from another person. I suggest you go to the petition and read what this child's teacher has said of her progress. I suggest you get your matches ready.

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    2. Elizabeth, You can suggest all you want but you still haven't said anything about the hospital's version. I am with surgnurse, there is definitely something missing. Like she says, she wants to see all the facts. The links you discussed above are not from the hospital. I will be ready to light my match too, but lets hear facts and not emotions.

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    3. I agree with surgnurse, but unless the family signs a disclosure allowing the hospital to tell its side (not bloody likely), that side will remain untold due to patient confidentiality laws. And no number of signatures on petitions will outweigh the sound judgment of trained professionals, i.e., doctors and surgeons. Nor should they.

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    4. I do hope that if this family is unable to give a kidney to their daughter they still are willing to safe another child's life.

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  17. This is sickening. Thank you for sharing the link to the petition. Will share.

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  18. I am a nurse as well, I also feel like there is information missing from this article. I am also the sister of a child in a persistant vegetative state that passed away 2 months ago. There are different considerations that have to be made for the health and wellbeing of these children, I PROMISE that there is something missing from this story, it isn't this cut and dry.

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  19. I used to be a transplant nurse and at my hospital we would transplant any child regardless (they even would list brain dead children). Transplant is hard no matter how healthy the child is.

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    1. I'm a transplant coordinator. They don't list brain DEAD children... they are pronounced dead and at that point may be listed as potential donors.

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  20. This makes me sick. My daughter was at CHoP for about a week and we had nothing but the best care for her in the NICU. This is a hospital that deals with ill or terminally ill children. How can they possibly be against a transplant for Amelia? I can't wrap my brain around this.

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  21. Can someone post a link from a source other than a personal blog? I'd like to see what is bring covered by news outlets. I'm not trying to be insensitive, I just think every story ought to be checked out for veracity. I can only find it on blogs. I'd like to know if CHOP has had any public response over this story.

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  22. This is completely immoral and deplorable and from a historic perspective extremely dangerous. This is how the Nazi's got started. Their program of extermination started with the mentally challenged, drug addicts and homosexuals. From a completely historic point this is scary beyond words. I am so shocked to hear this from a hospital such as CHOP. I have taken my children here and only received the best care. Of course my children are "developmentally normal" so that was expected!

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  23. SIGNED. How horrible.

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  24. I don't understand where the rage against pro-life individuals comes from in this. I am pro-life and I assure you that people who are truly pro-life are just as appalled and disgusted as you are. We don't just fight for no abortions. We fight for all life from conception to natural death. This story is deplorable and I absolutely would fight for this child's right to life, as should all humans.

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  25. I signed the petition as soon as I heard about this a few days ago. I'm utterly appalled at the callousness of these people who have this precious little life in their hands. I can't imagine.

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  26. It appears that the people in question have been given approval to have a family member donate the kidney, and CHOP will do the procedure (read about it here... http://www.huffingtonpost.com/lisa-belkin/denying-transplant_b_1207630.html).

    Doctors by and large are not widely known for their social skills (although many are excellent), and people who blindly "follow the code" (so to speak) are infuriating to me as well. A caring person would have explained (as the article above does) why being added to the list was the issue...not that she have the transplant at all.

    There are nearly always options...and pig-headed people who attempt to stand in our way to find the right one.

    I'm glad that they won this one for the little girl...it is my sincere hope that this transplant goes well, with no down-line complications, and that the kidney lasts for many years to come. Her outlook given her particular disease (she isn't "just" developmentally delayed...she has Wolf-Hirschhorn Syndrome) is not good, so perhaps this will buy her and and family more time to spend together and love each other.

    God bless this little one and her family.

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  27. I searched for a complete news story - not a blog - and the one tiny snippet I found said that Amelia has 'brain damage' and 'Hepatitis C' in addition to a number of other physical and mental concerns (yes, including mental retardation) and that the odds are against a successful transplant; the risk of death simply too great.

    If they go forward with the transplant, I pray for all involved that it is the right decision. I am heartbroken for this child and her parents but it sounds like a transplant is more likely to cause or hasten her death. What an absolute nightmare for all who care about little Amelia.

    I would love to read, many years from now, that she defied all the odds and is living her best possible life.

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    1. Thank you for searching. I have continued to search as well. I found a bit of the same info since my post. I suspected there were other complications, which in some ways make the story even more heartbreaking, as Amelia faces long odds physically.

      I pray this family can make a decision and find peace with it. The doctors are in an ethical dilemma even with a direct donation. It isn't entirely an argument over the value of life, but over whether or not a life can be preserved at all. A surgery with nearly no chance of success and likely to cause even further pain and suffering even if successful in the short run is a choice doctors have to weigh when facing a family in the most dire circumstances of life. While I am pro-life, I also respect "First Do No Harm" - and sometimes intervention is not medically sound. I would want to have realistic, honest advice. If there is hope at all, I would choose medical intervention. Sometimes reality and hope are incompatible.

      Since this story already has drawn attention, whatever the outcome the hospital will be subject to public outrage. If they do nothing, it will appear they "killed" Amelia. If they operate and she doesn't survive, they will have taken too long and ruined any chance she would have had. If she survives and thrives, they would become the evil hospital that would have let her die but for the pressure from parents and public.

      No one has an easy choice to make in this case. Saying a prayer for all involved.

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    2. beautifully said, Jennifer!

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    3. I'm right there with you, Jennifer and amiles280. If other readers need to label someone as the bad guy, I guess I'll go ahead and take on that label.

      You are absolutely right when you say that the doctors have to take into consideration the chance of success of this surgery, and its long-term effects on not just the patient, but also the donor. If this surgery stands to hasten the death of the patient, medical ethics (not religious ethics - two different things) dictates that the risk not be taken. In other words, the TV show House is about 95% fiction and 5% actual scientific fact. (If he existed, Dr. House would have lost his license on ethical grounds long ago.)

      I definitely feel for the parents in this situation. Seven years ago, I was in a conference with doctors and social workers who advised against a transplant for a loved one, and instead recommended hospice. The reason: due to other existing medical conditions, any attempt at a transplant would have been an almost-certain death sentence. In fact, one surgeon said, "if we operate, we're basically going to euthanize your loved one, and I refuse to do that."

      I'm guessing there are similarities here.

      While the entire situation is tragic, the thing that I think makes it that much worse is the involvement of a tactless doctor... Or, perhaps just as likely, parents who refuse to acknowledge the possibility that they may be out of options. And I completely understand that. No parent wants to give up on their child.

      The doctor and social worker should have been far more sympathetic and comforting. But the parents should also have been willing to their entire reasoning. In the end, I have little doubt that the physician's reasoning is anything less than sound. It is highly likely that he made his recommendation not because of some prejudice against the patient's cognitive abilities, but rather, out of an acknowledgement that such a procedure would almost certainly be a death sentence, thereby robbing the family of another few days, weeks, or months with their child.

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    4. I think too though that the physician and social worker may have gone in there with good intentions and tried to be sympathetic, but it sounds like this Mom didn't want to hear it. I'm not blaming her, she's dealing with something so hard I can't imagine. But when you're in that desperate place of grief over your child, it can be hard to hear things as intended. Especially once offended. She's hurting and she needs someone to be the reason/bad guy. It's understandable, but not fair.

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    5. Jennifer - you said what needed to be said beautifully. This is tragic all around.

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    6. Beth, I couldn't agree with you more regarding not wanting to hear things as intended. She is hurting so much, and definitely needs someone to blame. I just hope all parties involved can find some sort of peace. There definitely needs to be a conversation with the hospital's ethics committee. And the conversation needs to go both ways - all parties involved need to listen as much as they talk.

      It won't be easy, but it is necessary.

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  28. I do not have children, I am pro-choice, and I am absolutely disgusted by this. If I were her, I would keep searching until I found a doctor that would do the surgery and then I would sue the original doctor for discrimination. I don’t see how she could lose – if her child were not mentally retarded, the doctor would do the surgery – how is that NOT discrimination? I am happy to sign this petition and will spread the word!

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  29. oops... accidentally deleted my comment. I work as a transplant coordinator. Please understand that there is most likely more to this story. I have been in the unfortunate position of denying a person transplantation based on certain criteria. Not EVERYONE who wants a transplant will get one and sometimes living donors will be turned down for their OWN safety. Please, please educate yourself on transplantation by going to unos.org. There are hundreds of thousands of people waiting and only minimal organs! People on that list WILL die. Just to play devils advocate, what if your healthy child was waiting and never recieved an organ because someone else did? It's a ridiculousy tough profession and it saddens me that people think those in my profession are playing God! We follow policies and criteria based on National laws and guidelines for organ allocation. They should bring this to an ethics committee for final decision. I really love your blog, but this post... not so much:-(

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    1. They weren’t asking for someone else’s kidney – it is coming from a family member.

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    2. Thank you amiles280. This was a very good post. I feel for the family, but people don't understand how extremely complex the transplant process is and that the regulations are in place for a reason.

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    3. and they may be looking out for the family members best interest if they decided not to transplant. Often times, the actual surgery is more dangerous for some than actually NOT recieving an organ.

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    4. living donors USUALLY are family members... that doesn't mean they will be an ideal candidate either

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    5. Exactly. This story is so much more complicated than a blog post. I'm actually saddened that this blog, which has usually been funny, has decided to take a stance on such a charged issue without presenting both sides. Organ donation, no matter who it comes from, is subject to all kinds of regulations and doctors have to make tough choices. Pretending that isn't what happened here is just ...perpetuating a lot of misinformation.

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    6. Amedeo, I'm fired up about this. Everyday I'm faced with ethical decisions and such. I loved this blog as a release and a good laugh but now I'm just really disappointed... Transplantation has such a stigma already and so many people are uneducated on the subject. I love that the post states that Amelia has just as many rights as a brain dead person when about 90%, if not more, transplants are FROM brain dead people. SMH. www.unos.org, www donors1.org

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    7. Regardless, this team did NOT communicate risks to these parents. They discussed the MR. It's sad to me that even the social worker couldn't communicate effectively. It put the parents through hell.

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    8. pj... The team may not have communicated the risks effectively, but there's also the possibility that the parents just didn't want to accept that they might be out of options. Hence the "warning." I'm guessing that "warning" was "these folks aren't going to take it well, so please be gentle and patient with them."

      I can't blame the parents for feeling the way they do. That's their baby, and no matter how young or old the kid is, you never want someone to tell you you're out of options.

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    9. Amiles80.....BEAUTIFULLY said and god bless you for doing your job!!!! I work in a level III NICU and I in no way believe the hospital made this choice lightly, and there's NO WAY the full story has been published. With children peoples emotions come first, but knowing what I know, with where I work, I can only believe CHOP was making the best choice possible.

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    10. thank you for saying this. There's almost always more to the story... Almost no one really wants harm to come to others. Sometimes we do the best we can do.

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    11. Also important to note that the Mom said family would be willing to donate - not that they have a tested donor. A big family doesn't equal a lot of changes; a relative other than a brother or sister is only slightly more likely to match than a stranger from the same demographic. Even having an available donor doesn't mean the doctor still wouldn't feel that the surgery alone would be fatal for her.

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  30. I used to work on an adult transplant unit (I am a nurse) and there are very strict regulations for transplants- they are in place to ensure the best possible outcome for donors and recipients. I'm a mom and want everything in the world for my son, but maybe Amelia (as others have said) is too frail/ill for the surgery, extensive aftercare and medications. Doctors are not bad people. If the surgery would kill her, then she'll live longer without it.

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    1. I'm with you! It's really difficult being a nurse in transplant. If people only knew what transplant really entails!!! The life long medications, risk of cancer from immunosuppresion, etc, etc, etc, Hopefully this petition will allow to some to become more informed of the whole wide world of transplant.

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    2. agreed... people don't understand that you don't just get an organ... there is a risk of cancer from immunosuppresion, life long meds that are EXPENSIVE, etc. etc, etc.

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    3. amiles280...I agree with the transplants and really wish there were a better solution. My daughter will need a kidney eventually and only has 1/2 a heart, so I don't know if this will be considered a dis-qualifier. My hope is that she will not need her kidney until they have developed an artificial kidney. I understand about the major issues with transplantation and hope my daughter will never need it, but if she does I can assure you I would fight like heck to get her one...even if I had to go to a different hospital. She was already denied her first open heart surgery from one children's hospital because of her kidney problem (because she MIGHT not make it) and that was over 2 years ago. I believe it is unethical for doctors to be making these types of decisions. I think it would be in everyone's best interest to share the risks with parents and allow them to decide which option to take...even if they have to tell a parent 'we won't do it here, but you can always go somewhere else'. Most places don't bother telling parents that there are other places they can go.

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  31. ErinLynn - No, not ALL doctors are bad, but there are a lot of bad ones out there and that is coming from first hand experience.

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  32. Okay... I know the hate mail will come from this but can't you see that you are part of the problem? You and your "pro choice" attitude have helped make the indifference to human life that exists in this country.

    Your statement "If you're going to call yourself pro-life, then you'd better be willing to back up ALL life. I'm pro-choice and I have a problem with this, so pro-life people should really have a problem with this." Everyone who is pro-life SURELY has a problem with this... on the other hand, how can you say "it is okay to kill a baby because the quality of the MOTHER'S life could be inconvenienced, but don't kill this girl" Your attitude should be "ALL life is precious, baby in the womb as well as child with additional challenges". I have been blessed with 4 healthy children, but I had relatives with a severely handicapped child. If she were in this position EVERYONE in our family would come together to ensure she received the treatment she deserves.

    By the way, the baby in the womb is also a living human being who has family and friends who love her dearly EVEN THOUGH THEY ARE NOT BORN YET and you think it is okay to kill them because they are not outside the womb. In your own words "How fucked up is that?"

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    1. Anonymous10:18

      if they love them dearly, they wouldn't have an abortion. sorry.

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  33. "Surely Amelia has as much right to life as an unborn fetus or a brain dead person hooked up to a machine!" I'm not sure you really understand where organs come from either... brain dead people!

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  34. Hi, I think you are absolutely right that this is awful, but I think your assessment of the pro-life movement is a bit off. I won't go into a ton of detail here, but I will say that every pro-life organization I've ever met, extends their fight to situations like this. They picket just as hard to help in these awful situations, and many have networks set up to find doctors and hospitals help the child. I'll cite this situation for my example: http://www.lifesitenews.com/news/baby-joseph-saved-from-life-support-removal-transfer-to-michigan-hospital-l/ Baby Joseph has since passed, but pro-life groups rushed to give him a fair chance, and the care he deserved. I love that this fires you up, and I hope that perhaps your feelings in this situation help you to realize that all human life is indeed this precious, and deserving of such righteous rage and protection. An unborn infant, a disabled child, a sick adult - no one should decide a life is worth nothing! Best to you...

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    1. I agree - and posted something similar. Thank you for pointing this out as well. Its unfair to say that the pro-life movement doesn't care about issues like this - even though their emphasis is clearly on abortion.

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  35. My son has down syndrome, and if he needed an organ and the dr said no because he was "mentally retarded" I would have told him that he was the "retarded" one if he did not expect me to sue the shit out of them for discrimination and then I probably would have punched him in his pompous little face, forget the throat

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  36. I think we should fight for ALL life. Including unborn children. I don't like the fact that you devalued the fight against pre-birth murder. I believe Amelia's life has the SAME value as any other person. I hope people in the pro-life community rally behind her like they've done in previous situations for other children. Those doctors are seriously sadistic for saying that it's "hard on them". That's like a kick in the gut for the parents.

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  37. I'm not sure how this went from Amelia's story to a pro-life / pro-choice debate, but anyway, I read the other article that one of the other people that commented posted and it looks like they are in fact going to do the surgery, so it sounds like the Doctor(s) that some people think are God for some reason started backtracking for some reason. So if their first decision was "right" as some people seem to believe, then why would they not stand by their decision to not do the surgery?

    Doctors are not in fact Gods and they do make mistakes just like everyone else. There are also a lot of Doctors out there that are in fact idiots. I'm not saying this particular Dr. is an idiot, but just because someone is a Dr. doesn't mean they are incapable of making a mistake, and a lot of them do make mistakes - BIG ones.

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  38. You are pretty bitter medicated and motivated.

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  39. That's pretty fucked up. I hope the family takes the money they've saved for the organ and hires a good lawyer. Seems like the ACLU would be able to help....

    I cannot IMAGINE. :(

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  40. I just think it would be best not to judge without knowing the full story. These poor parents are grieving and love their sweet girl, they see things through a bias. In medicine, the job is to not have that bias. As the doctor said, this is hard. The FACT is that there are not enough organs. People die every single day waiting. They say the family will donate, but they do not know that they even have a match. The doctor's job is also to protect the family member that would donate. They might be willing to donate, but have something about their health that makes it an unwise decision. They might make it anyway, out of love for the little girl. But it is the doctor's job to first do "no harm." I have seen kiddos turned down because the families have poor follow up history and don't manage the kid's condition well pre transplant. This is because there is such a limited supply of organs; they must go to the candidates who are most likely to benefit most. Again, this little girl has an extremely rare genetic condition that often involves heart defects and seizures. You're asking her to undergo a transplant (hard on the best candidates), and then take extremely potent anti-rejection drugs (in concert with the drugs she's already on, the interactions will be endless, and maybe give her so many seizures that her quality of life would be awful). I'm just saying, without viewing her history and the medical details of her condition, no one is in a place to judge. The parents are grieving and scared, understandable. But what if the couple years she has left are taken now by a transplant? Then the doctor would be the villain all over again... You go to the experts because they are the experts. They don't know everything, no. But CHOP is top notch and doesn't deserve this condemnation.

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  41. Also..think of it this way. Your baby passes away. You make the heart wrenching, but unbelievable generous decision to donate their organs. (consider that an adult family member's organs may be too big for this little girl; she may require one from another child). You find out that because of some public outcry your precious child's organs went to another child that would not be able to use them long and that the transplant procedure gave them an even poorer quality of life. How would you feel? This tiny supply has to go to the healthiest people because it does the most good for the longest time.

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  42. One more thought - look at all the threats for litigation. This is a big reason our medical system is broken. No longer about helping the patient, but about avoiding the lawyer. It's a shame. And a shame it's the first threat people reach for.

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  43. Pro-life, appalled by this story and appreciative of your attention to it. Petitioning right away. How little our culture values life!

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  44. Pro-life and pissed. I've passed the stories along to Priests for Life and the National Catholic Center for Bioethics.

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  45. Forgive me if this point has been brought up, but what if this child rejects her family member's kidney? Now she goes on the transplant list, and I can only assume she would go towards the top. And as someone pointed out, put yourself in the parents' shoes of the child next in line below Amelia. How would that feel if you knew the first transplant wasn't a responsible procedure? We don't have all the facts here by any stretch of the imagination. Let's not make judgments until we do and please, no punching the doctors at CHOP in the throat, because, God forbid, you need their expertise next.

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  46. Not to sound like a heartless bitch, but the fact that she has Hepatitis C also disqualifies her for a transplant. One of my best friends from childhood - a brother to me - got Hep C form a blood transfusion in 1980. This prevented him from receiving the life-saving heart transplant he needed as an adult. Basically, if you have Hep C no amount of petitioning is going to help you - no hospital will transplant an organ into you.

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  47. Anonymous10:15

    fuckers. if they don't care about "quality of life" when you want to have an abortion, and they don't care about quality of life then, how can they say that here. like, fucking hypocrites.

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  48. I am confused about the assumptions being made against pro-lifers here.

    First - the pro-life movement is focused primarily on abortion issues which is not a secret, so it is certainly not wrong that major pro-life websites or groups may not have come out publicly on this issue: it does not fall within the emphasis or purpose of many of those groups in several ways. For the author to suggest that these groups are somehow being ridiculous by not supporting this issue is really unfair and not thought through, in my opinion.

    Second - The only people I have heard about this from are pro-life people via facebook, so, I think it is safe to say that those of us who are pro-life are listening, do care, and my guess is MANY have signed the petition. Us pro-lifers do care about all forms of life, including situations like this which are very, very unfortunate and arguably wrong, so for people to comment that prolifers are "f** hypocrites" is very confusing and flat out ignorant. It also seems to me to be a classic example of the profane and unthinking rhetoric cast out against pro-lifers. I could go on about this - like why the pro-choice movement doesn't speak out when issues came up last week concerning a young girl being forced to abort her baby by her parents (apparently choice only matters when the choice is getting an abortion) but I won't. No pro-choice website commented in favor of that poor girl and her "choice" to keep her baby. Hmmmm

    Third - I disagree that the pro-life movement should be caring about this issue and this girl MORE than the unborn (as the author suggests) because she is "alive and breathing". Unborn children are of value and worth just as much as this poor Amelia - they are both human beings, made in the image of God. The author has let a bit of what seems to be her bias towards the unborn show by suggesting that Amelia's life is more valuable than an unborn child.

    I haven't taken the time yet to read the full story about why this girl was denied, but it sounds a bit like from scanning the comments that there were some other serious reasons she was denied, besides the fact that she is mentally retarded. I don't think i can say 100% that this is wrong that she is being denied, even though my gut tells me it absolutely is wrong and these doctors have no right to deny her when people want to donate and they can pay for the operation - but, I will admit that I can't say its wrong 100% without having all the facts and knowing everything the doctors know.

    It does seem to me that on a simple level, everything should be done to save this poor girls life regardless of her mental health.....

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  49. Anonymous11:55

    You are creating a sensational story without knowing all the facts. Consider this- should a surgeon be FORCED to perform an operation that they don't feel should be performed? As I surgeon, if I don't think an operation in is my patient's best interest, I decline to operate. If the patient or family disagrees, they can always get a second opinion. Let the family go to some other hospital that performs kidney transplants and talk to a different surgeon. I will not be FORCED to operate on anyone when I don't think it is the right thing to do and neither should the surgeon in the story. Surgeons are not puppets, and we retain the right to decide for ourselves when to apply our skills for the benefit of humanity in the context of our own interpretation of "right and wrong." Having said that, I personally would have offered this patient a kidney transplant.

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    1. Why would you have done it?

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  50. While I cannot support the hospital's decision based solely on the mental capacity of the prospective organ recipient, this article brings up a larger societal issue of entitlement. Whether we like it or not, health care in this country has always been treated as a privelege. We are highly irresponsible with the way in which we disseminate our health care resources and this comes out of a free market system. We as Americans will have to choose sooner rather than later whether we want to accept health care for all at the expense of convenience and access or whether we wish to continue with the current unsustainable system leading us into economic turmoil. A change of mindset by our citizens is necessary before we are capable of accepting health care for all. In this particular case, you are looking at a team of transplant surgeons who have far more requests for surgery than they have resources or time available to accommodate. Transplantation of an organ is no light matter. It requires intense rehabilitation, numerous doctors visits, lifelong toxic medications with the potential to harm. That is why there is an intense psychosocial as well as physical assessment as to whether individuals are fit to have surgery prior to any transplantation. While on the surface it may seem cold to reject a mentally challenged patient from receiving a transplant, none of us know the overall circumstances that led to the rejection in this particular patient.

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  51. I'm a mother of a child that has special needs. You would never be able to tell looking at her, but her body does not break down protein properly. If those doctors would have told me that shit, you would be writing about a mother being jailed for kicking a doctor's ass. Arrogant fuck faces....

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  52. When I first read this story I was also appalled. But when I read more of the details of Amelias illness, I understood more. The surgery would require her to take medications to suppress her immune system..to prevent her from rejecting the kidney. The chances of her dying from that are pretty good due to her syndrome. Also keep in mind that the only side you are hearing is the mothers. She is telling you what she "heard" in that meeting. Chances are she heard alot of other reasons why they can't do the surgery but she focused on that. Doctors have to make tough choices all the time and im not judging this one until I hear more of the facts.

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  53. I am surprised that people are waiting for more facts! This is a child who is being denied an opportunity at LIFE! If it were any other situation but a child with WHS and MR, there would be no question about being on the transplant list. Some of you are assuming that because she has special medical and cognitive impairments that there need to be more facts.

    No here are the facts: She is 4 years old and she will be dead in 6 months without a transplant. What else is there to say?

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  54. This is so wrong. The doctor should do it. Let God be God, not the doctor.

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  55. Hey all of you who were behind Obama and health care reform... this is just the beginning. We will all be rationed, unless you can pay. Sadly, this is just a reflection and the beginning of what is happening in our healthcare system. Hang on tight!

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  56. Oh Jen! You struck a cord here with this pro-life girl. First and foremost, before you discount my commentary on this post, I will tell you that I occasionally click onto your blog via Facebook when a topic that looks interesting pops up. And I often find myself laughing and agreeing and sharing your blunt view of the world with my husband. But this post pissed me off. Nope, I won't quit reading your humorous blog because you are pro-choice and I am pro-life. You make me laugh. I like funny people. But today, you deserve a throat punch. Let me enlighten you.
    Apparently you do not keep up on what the pro-life movement does and does not do and so you've decided to attack them with accusations of "where are these white cross putter uppers when a real child needs them." You know, because babies in utero are fake... or not alive... or not growing (one dumb ass commented that pro-lifers need to quit focusing on fetuses and help people that are alive and growing... what a fuck head...as if fetuses are all dead and not growing). Anyway, back on topic.... Last February, a pro-life Catholic priest made national news when he offered to pay for all the costs associated with getting 13 month old Joseph Maraachli from Canada to the United States for surgery so he could go home with his parents where he would live for just a short while. This baby was the subject of controversy as his parents were fighting a hospital that wants to remove his breathing tube.
    Anyway, without recapping the entire lengthy story, the priest rallied a pro-life group and they were able to get the baby to the US. Here were his comments:
    "The parents of this precious boy are asking only to be allowed to bring Baby Joseph home, where he can die surrounded by those who love him. It's beyond imagination that they would have to ask. This is not an issue that belongs in the court, or in the hands of his doctors. This is their son; he needs to be home with his family."
    This is one example of thousands of what the pro-life movement does. This one just happens to be one that was brought to the attention of the media.
    We do not only protect the unborn, Jen. That is so unfair that you went after the pro-life movement like you did. It was as if to say we do nothing to protect life after birth. The pro-life movement works tirelessly to protect ALL life. It just happens to bug you that they also protect the unborn because you are pro-choice. Or at least it seems that way.
    That is all. Write on. You make me laugh.

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  57. I'm sharing some of Katie's sentiments above.

    I am strongly pro-life, and I was one of the early people to speak out against what happened to Mia Rivera. I am also disabled; I am Autistic. I'm disappointed that you felt the need to spend a significant segment of your post haranguing the pro-life movement. If it had so happened (and it didn't) that a significant number of pro-lifers or large pro-life organizations were intentionally silent or silent out of lack of knowledge, or tacitly or explicitly supporting the CHOP doctor, that would be a different thing. But that isn't the case. There was no need for you to spend that much time perseverating (in a negative way) about pro-lifers.

    BTW, my post in response to Mia's situation can be read at "Life Not Worth Living."

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    1. Er, "intentionally silent, and not silent because of a lack of knowledge."

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