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Kidney Chronicles: Part Two - wolfhirschhorn.org

Just the facts for today:

We saw nephrology and Mia is dong well. We asked the important question, “How long do we have until she needs a transplant?” Response: About six months to a year.

We were happy with this news!

We then met with head of transplant team. It did not go as well. After showing us a checklist of people who are not  elgible for transplants, Mia falls under “Mental Retardation.”

We leave CHOP.

Bitter and hostile post to follow when we calm down.

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28 Responses to Kidney Chronicles: Part Two

  1. Michael Hardman says:

    Crivera,

    I dont know what to say! Someone someday has to tell me why someone who has mental delays is worth less than someone who does not.

    My daughter also has kidney problem she is 2 years old now and we do not know where this road will leave at present they are functioning well enough but at the top end of the acceptable spectrum.

    My heart and thoughts are with you all at this time and hope in my heart that you can find a solution that suits you all.

    If you are able to discover a solution that is a viable option please let us all know.

    God Bless

    Michael and Loide.

  2. Kristen says:

    OMG.OMG.OMG. I’m hyperventilating over here. I am praying for you every minute. Love you.

  3. Laurie says:

    As I said to Joe, words escape me ~ the mixture of emotions I have over the transplant team’s response is volatile, so I cannot begin to fathom what you are going through– what you are feeling. Mia is in my thoughts and prayers day and night…as are you, Joe, and the boys. I believe in miracles, and I will continue to believe that there will be a positive outcome. In the meantime, I am always here; it’s a short drive to South Jersey if you need anything– even if it’s just a hug. xoxoxo

  4. crojek says:

    Chrissy –

    I am shocked, just shocked to read this post. When Kevin read an excerpt to me I angrily jumped out of my chair and grabbed my laptop to respond. I also cannot offer much else to you except my most heartfelt prayers to you all; however, I cannot contain the disgust and anger that has welled up inside me over this. How is it anyone’s determination to make as to whether or not a child deserves a chance at life based upon his or her mental capacity? That a child with special needs is treated differently in our society is one thing, but to be told that a life-saving surgery is not permissible because of those special needs is quite another. What kind of world is it where others determine who is and who is not worth saving? It is disgusting, and wrong in so many ways. WE SUPPORT YOU 100% and will do whatever we collectively can to help you. We will rally to send Mia to the ends of the earth to get what she needs, we guarantee it – whether it is Chicago, New Jersey, Mexico, Tahiti or China.

    Sorry to be so overtly angry – we are all in this boat together and this could easily be any one of us. We love Mia and will NOT let this be the ultimate decision for her.

  5. Heather says:

    This is horrifying. I am shocked and disgusted to hear that life-value would be rated according to IQ. It’s appalling. And I don’t know what to do about it… I am praying for Mia and your family, and if there is anything else that can be done, I would like to be a part of it. Fund-raising efforts, a letter-writing campaign, phone calls, anyone have any ideas?

  6. Hannah says:

    Chrissy- My heart is breaking for Mia and your family, but I know that she will get the medical care she needs to live a long life. This is not the end of the kidney chronicles. We are praying for Mia and sending lots of love your way.

  7. crivera75 says:

    Thank you everyone for your support. I am just now starting to see beyond the tears from yesterday’s events. We are going to fight this 110% and although I am not sure what anyone can do, I will let you know when we have come up with a plan. After Mia has her transplant, whether it be at CHOP or another hospital, I plan on devoting my life so this never has to happen to another human being again. I have shut down my FB page and Amelia’s FB page to focus on this new brick wall that I did not see coming. But you can still reach me here or at chrissyrivera@comcast.net.

  8. Wow. Whatever you need. I will gladly help. Cannot believe this and will be praying for a speedy resolution and REFORM of that ridiculous transplant “rule.”

    love you guys.

  9. Ross says:

    Chrissy, along with everyone else this leaves me baffled, outraged and overwhelmingly sad. I, perhaps naively, had absolutely no idea that learning disability/IQ/mental retardation/special needs (whatever label you want to put on it) could be, and is, used as a sole determining factor for transplant eligibility.

    I have been doing some web research to find out as much as I possibly can on the subject but have not as yet been able to obtain any clarification on what stance the National Health Service in the UK (where we live) take on the matter. It seems, understandably, that this is a bit of a dark secret as far as the medical profession are concerned.

    There are, as I am sure you have discovered yourself, many cases where these unjust decisions have been fought, and overruled. The first of its kind being Sandra Jensen, a woman with Down Syndrome whose supporters fought for, and won, her right to a heart and lung transplant in 1996.

    This paper relates another case where a Canadian transplant centre ‘revised its policy’ and gave a 17 year old boy a lung transplant only after his parents made a public appeal following an initial rejection on the basis of his mental capacity.

    Another paper from The American Journal of Transplantation focuses primarily on Italian policy on the matter, but the points made are entirely universal. Notably, in the penultimate section the author outlines the four main arguments regularly cited as reasons why patients with ‘MR’ are excluded from organ transplantation, and goes on to blow each and every one of them out the water.

    Not that you need me to tell you – but this is just the beginning of the battle, not the end and we are all here to offer whatever support we can.

    Love and best wishes.

    Ross

  10. Dorothy says:

    Your brick wall blog is about to blow up, as its making its way around FB. CHOP is going to come off as money grubbing whites. Good the CHOP transplant team should he ashamed.

    They aren’t even close to being the only good children’s hospital in our area. There are at least 2 others, St. Christopher’s and Temple Children’s as well as the ones in NYC and Baltimore/DC area.

    My cousin’s daughter has DS. She needed open heart surgery as a baby. It was done at St. Christopher’s. She ended up switching all her to all St. Chris docs because that is who treated her like a sick kid, not a mentally retarded sick kid. If you haven’t already look into them for care. You may have better luck getting your daughter treated as a person there.

    Also, my son had surgery there for Craniosynostosis in May 2009. I left there loving them for their ability to treat parents like people, not something to be handled.

    I’ll be praying for your family and your daughter.

  11. I’M Soo sorry i just your story about your liitle girl i’m very sadddd for your all why would someone do that
    keep us all up dated on her progress
    write back my name is Travis Patterson from Reinholds pa

  12. Peg says:

    After reading your story, I thought I’d check out the website for CHOP. I found the patients bill of rights (http://www.chop.edu/about/our-philosophy-of-care/patients-bill-of-rights.html) and to my shock, the second one listed states, “Receive care, treatment and services regardless of race, color, age, sex, national origin, religion, handicap, disability, sexual orientation, who pays for care or your ability to pay.”

    I hope the administration there can explain to you how being refused for surgery based on the merits of mental retardation fits in with this right.

    I hope you find the courage, energy, and funds to sue the hospital and specifically name any personal directly related to the decision in your case.

  13. heather cherasaro says:

    Praying for you! Waiting to hear more updates too. Hang in there~ trust God…

  14. Frustrated Mother says:

    For all of you who are trashing CHOP for denying this transplant, you need to stop for a moment and look at the larger picture. Mia was NOT singled out as the ONLY child EVER to be denied a transplant at CHOP. This doctor and transplant team are not “picking on her” or “playing God because she is retarded”. There are GUIDELINES in place for a reason. These GUIDELINES are applied to each and every patient who is considered for a transplant. Each and every single day, there are both adults and children are who highly intelligent and capable of contributing to society but are still denied a transplant for not meeting the criteria/guidelines. This decision is not because she is not capable of ever holding a job or contributing to society. It goes far deeper than that when you consider everything that has to be done to her before, during and for the rest of her short life after the procedure.

    You all are making it seem as if the world has stopped turning because the mean ole’ hospital is picking on the poor little disabled girl but in reality, sometimes the “cure” causes more harm than the condition. I have seen the other side to these procedures and I KNOW the things that can go wrong. I have watched these beautiful children seize for 4 and 5 hours at a time over and over again for a period of a week because the ARM dosages were wrong. Then the parents only think of themselves and their emotional pain and demand the doctors to keep trying, which only causes more distress to the patient.

    These children are put thru things that would be considered abuse if it was done to an animal and they suffer greatly, all so the parents can be at peace. Life is not fair. Life is not easy. But life should NEVER cause so much pain that children are begging the nurses to please let them die so that it stops. Yes….I have seen the other side of these procedures which most parents will never see……..think CAREFULLY before you make decisions for you children because oftentimes we cause more harm than good for our own selfishness.

  15. crivera75 says:

    Dear frustrated mother,
    I will tell you that our first meeting with the transplant team we were told that the only reason she was being denied was because of “mental retardation.” I asked many times if this was the only reason and he said yes. Mental retardation was a guideline but at our second meeting this was no longer there. Why? Well, you seem to know it all, so I don’t think I have to tell you that it was discrimination. As for your statement about my child living a short life, I am curious to know where you get your information because we could all make millions
    predicting the future. Thanks for telling me that life is not fair and easy. I had no idea.

  16. Frustrated Mother says:

    Dearest crivera,

    No, I do not know it all and I have never claimed to. I have, however, experienced the other side of this situation myself as a parent as well as with other parents and patients thru my career. I know that you just alienated an entire group of medical professionals who have read your blogs here and now know how you feel about the people who work 14-16 hours a day to provide care for not only your child but thousands of others.
    How do you think the world-renowned surgeon felt? He is sitting there looking into YOUR “little brown pudgy face” and seeing hatred and bitterness when he is only doing his job and working under the rules that were given to him. Do you think it is easy to do what we do everyday? Well, it is not. It is every bit as difficult from the professional side as it is the parental side but people like you easily forget that.

    There are those parents who are blessings to us then there are “those parents”. “Those parents” are similar to the ones you would deal with as a teacher. You know the ones so do not pretend like you don’t. They are the ones who talk over the experts becuase they already believe they know it all. They are the ones who do not even need the experts, because heck! they can do it better themselves. You also know what happens to the students of “those parents”, don’t you?! The children, no matter how lovely they are, are then treated differently. They are then outcast because no one wants to deal with “those parents”.

    Are you even aware that a physician can refuse care to any patient unless they are in immediate danger of dying? If they are stable, the patient can be fired from the clinic or referred off to become someone else’s problem (this is the common method to remove hostile patients/families). Anyone can threaten a lawsuit or blog enough bad publicity to get the immediate response they want, however, you are alienating the very people who you are demanding fix your daughter. You are being bitter and hostile with the people who will be responsible for your daugther living thru this procedure.

    My responses on this blog were not meant to anger anyone; they were simply to ask people to look at the larger picture. It is difficult for most people to do because they are too wrapped up in only themselves and their immediate family but it is possible if you are brave enough.

    Oh, by the way….After you tantrum, how many world-renowned surgeons stepped forward begging to help you? Perhaps if you had approached the situation as “How can I fix this situation” instead of “EVERYONE WILL BOW TO ME BECAUSE I DEMAND IT”, none of this would have even been necessary. Then again, that would not have fed your addiction for drama, would it?!

  17. Frustrated Mother says:

    Dearest crivera,

    I have a few questions for you.

    Do you believe that Mia should be allowed onto the UNOS registry if you cannot find a direct donor?

    Do you believe that EVERYONE, regardless of incapacity, should be allowed to receive an organ transplant?

    If no, then where should the cutoff point be for denial of transplant?

    Do you believe that any physician should be forced to perform a transplant or procedure on any patient who requests one regardless of whether or not the physician feels comfortable with it?

  18. crivera75 says:

    Dear frustrated mother,
    Please email me personally chrissyrivera@comcast.net to continue conversation. This blog is meant for families of whs and people who want to learn more about this syndrome. I don’t feel this is what you are here for. Thanks!

  19. Frustrated Mother says:

    Dearest crivera,

    Actually your “feeling” is completely wrong. I came to this site to learn more about a little-known syndrome and educate myself in it because as a professional you must continually learn and evolve. I also came to this site because while you can say whatever you wish about CHOP and the medical professionals who devote their lives to helping children, they cannot even defend themselves properly without breaking HIPPA regs so someone needs to present the other side.

    You’ve made statements that you will “dedicate your life to making sure this never happens to any child again” which is why I asked the questions I did. Will you only champion for WHS children or all those with SN (whether physical, mental, or emotional). What about the “norms”? Are they worthy of your help?

    You are charging into the transplant requirements like a bull into a china shop and I am asking you, along with every other parent, to slow down and think carefully because sometimes things are not what they seem.

    There have been many comments on this site about how “ALL” life is valuable. Should they only allow WHS syndrome children to be added to the transplant list or ANY child, no matter how severe the incapacity? Should someone who is 100% dependant upon a caregiver, with absolutely no registerable IQ, and no hope of ever gaining faculities, then be allowed onto the UNOS registry for a transplant? If not, then what degree do you draw the line and begin denying? The parent of that child will feel just as strongly as you do that they should be allowed. What if THAT child is the one that gets a kidney before Mia because they are more in need and therefore bumped up the list? Would you still feel as strongly that ALL life is valuable?

    Would you be able to go into the room of the 7 year old little girl who has spent years on dialysis and tell her face-to-face that SHE will not be eligible for the kidney because someone who will never walk or talk and has never even been on dialysis has just been bumped to the head of the list because her mother threatened to sue the hospital?

    Should an illegal Mexican immigrant with a child who has multiple health issues such as severe MR and end-stage cancer or AIDS be granted the next kidney available so that they can enjoy a few more months with their family? Even though they are not US citizens, they are still people. Even though the child will only have a few months, it wouldn’t be a waste of an organ would it? Even if it was Mia who was bumped further down the list in order to serve them first and you had to watch Mia waste away while waiting another year for her chance?

    The current laws keep criminals from receiving organs. If ALL life is precious, so is theirs. This means that if a child with no hope of ever even recognizing their mother or father is allowed a transplant then why shouldn’t a convicted felon receive one? Who cares if they spend the rest of their life in jail for rape/murder/abuse? They are still people so shouldn’t THEY go on the list above Mia if they are more phsyically needy?

    Would you allow Mia, or any other SN child, to donate organs? If not, why? If they can receive, they can surely give. If someone donated a kidney to Mia then they required a lung or partial liver, would you give them one of Mia’s?

    This situation is not as simple as the “poor little disabled girl was denied” and that is the point I have been trying to make. If you are going to make changes, then do so carefully. Do not create more problems then say “oops, well, I’ve gotten what I wanted so now the professionals can deal with the consequences”. “First do no harm” applies to parents as well.

  20. Laurie says:

    Chrissy, you are too kind to even offer to continue the conversation with ‘frustrated mother’. I find her tone offensive and attacking~ not to mention her accusations inaccurate if not completely baseless. I cannot help but wonder if she is the social worker from CHOP who sat in on the meeting– she seems to think she knows a lot about you personally; and I also cannot help but wonder if she is a mother herself, for I cannot believe that she does not understand the issue that has been raised regarding the value of all human life. In any event, those of us who do know you understand your frustration, anger, and despair over all that has happened, and we thank you for bringing it the attention it deserves on a national scale. We also understand that you never attacked CHOP or the professionals who have treated Mia. In fact, we can all testify to FM that you have always spoken well and glowingly of the specialist at CHOP prior to this incident. She has made her position clear; it is time for her to move on with her life and allow you to do the same. The rest of us? We’ve got your back, and we love you! xo

  21. Laurie says:

    As I posted my comment in response to the response prior to the latest by FM, I just wish to add two things:

    1) I meant to say “specialists” (plural) at CHOP– Mia has been wonderfully cared for by many, many terrific doctors and nurses, and the Rivera’s have never said anything to the contrary.

    2) The questions raised in FM’s latest response do not reflect Chrissy’s stated mission– which was that she wanted to make sure that children were not denied transplants solely on the basis of MR, as she and her husband were lead to believe was the case after their meeting with CHOP. The plethora of additional “what if’s” presented by FM are not relative to that concern. Chrissy and Joe have made it quite clear that now that they have the full scope of medical concerns regarding the transplant procedure and follow-up care, they will be moving forward with what they feel is the best decision for their daughter…whatever that decision is.

    This is not about the UNOS registry– never has been. This is not about children with major medical issues taking organs away from children without. This is about the way we regard people– children and adult, alike– with mental retardation. As a “professional,” Frustrated Mother, can you concede that it is incumbent upon you (and professionals like you) to discuss such delicate life-and-death issues with parents with more compassion than those at CHOP did? More than anything, that is what got parents like us talking, reacting, and acting…Chrissy actually only had to tell her story; WE did the rest (and by we, I mean society at large). You say, “If you are going to make changes, then do so carefully. Do not create more problems then say ‘oops, well, I’ve gotten what I wanted so now the professionals can deal with the consequences'” puts all of the blame in one place…and as the Rivera’s did not seek out media attention on this and actively promote their story, you would seem to be laying the ‘blame’ at the wrong feet. If you want to point fingers, you’ve got about a thousand more people to be looking at.

    Bottom Line: None of us are in a position to judge another, and as parents, we ought to get down off of our pedestals and do the one thing God– in all of his forms and by all of his names– asks us to do: love, accept, and forgive.

  22. Frustrated Mother says:

    Dearest laurie,

    It seems my previous response to your post disappeared into the ethernet realm but I will try again because this issue is extremely important.

    1) You state that the UNOS registry is not an issue. If MR/SN is removed as a restriction from donation then the majourity of those MR/SN patients WILL end up on the UNOS registry. Very few have a stable of potential donors chomping at the bit to give away free body parts so the issues I raised, along with many others, are legitimate.

    2) The “what if’s” are actual situations that will occur, along with thousands of others, if MR is removed. If you think that society at large will not ask them, you are sadly mistaken. Also, ask the UK poster on here about medical tourists. I lived in London as well as several other European cities and I can tell you that it creates a HUGE issue for the locals.

    3) You love to throw out the “ALL life is valuable” catchphrase. If you truly believe that, then you need to be championing for ALL restrictions, not just MR, to be removed from transplant guidelines.

    If ALL life is valuable (and assuming equal), then NO PERSON should EVER be denied the opportunity for a transplant for ANY reason. It shouldn’t matter if they are addicts/alcoholics since that is caused by genetic mutations. It shouldn’t matter if they are convicted murderers on death row because they are people too. Transplants would have to then be performed on a “first-come, first-served” basis because no one could be ranked higher/needier on any list than another person because ALL life is valuable.

    4) As for how “delicately” the transplant team is supposed to treat patients. The easiest way to break news to someone is as simple as possible. It would not have mattered if they had candy coated their response to the riveras, the end result would have been the same. Also, when you do this every day, you must detach yourself from the negative parts or lose your mind after dealing with so much trauma in a day. You can NEVER understand what it is like until you do it.

    I challenge you to look outside the microworld you inhabit and honestly answer the questions/issues I have raised. I am looking for ANYONE who is brave enough to address the real issues or even just say “We want MR removed because it directly affects us. To heck with everyone else because only SN kids are ALL valuable”.

  23. Laurie says:

    Dearest Mother who is filled with frustration,

    I really do not wish to engage in a heated debate; we differ in our interpretation of the intention and meaning behind the post Brick Walls. I will agree with you only so far as to say that I do feel sad that in the public outcry that followed Chrissy’s heart-felt post, CHOP’s reputation and the reputation of the specialists who work there were possibly impacted in a negative fashion. I refuse to place blame for any of that on Chrissy, however; I am confident that it was not her intent when she wrote her post. The story went viral on its own~ to accuse Chrissy and Joe of single-handedly working to change policy is inaccurate and unfair. Many voices spoke out on behalf of Mia– on behalf of all children who could be Mia…who are just like Mia.

    I see your arguments. I understand your arguments. I believe that CHOP did the right thing and allowed the parents to have the right to determine the next course of action by giving them the full picture pertaining to their daughter’s transplant risks. I believe it is time to let this family alone to come to the very difficult decisions they now must face regarding the next steps in their daughter’s care. She has my emotional support as a friend and a mother~ I merely wish she could receive that kind of support from everyone.

  24. fairplay says:

    @Frustrated Mom, I cannot imagine having a child beg to die. To have to listen to them, and see them in agony for their parents sake. It must be the most heartbreaking situation to have to be involved in. I admire those in the health care business. I dont think I would be able to not get angry and speak my mind with “those parents”. I think your questions are fair to ask Mrs. Rivera as she has stated that she is going to dedicate the rest of her life to change the criteria for transplants.

  25. Frustrated Mother says:

    Thank you, Fairplay.

    It is refreshing to see someone who sees the entire picture instead of being blinded by the end of their own nose. It would have been quite lovely and reassuring to see an actual response from the woman who has made public statements regarding the changes she is going to make but that does not seem likely to happen. It seems as if the media was used to get what they wanted (as they didn’t refuse any interviews) and then when the tough questions come in they are suddenly busy. This family got what they wanted – the meeting to discuss a transplant. The actual transplant has not yet been decided so if they are denied again, will they then return to spin the story in the eyes of the media?

    The only thing we can do, Fairplay, is to continue to support institutions such as CHOP and UNOS.

  26. Laurie says:

    Perhaps it is because neither of you understood the post OR its intention. I do not see where her lifelong intent was to change transplant rules. I read, “that this will never happen again.” In context of the story, that means that a family will never be denied the right and opportunity to discuss all options for treatment in the case of a transplant. If you read the original post, it was crystal clear that being placed on UNOS was NOT the issue~ the issue was being denied the chance to even see if a family member could be tested and determined a match, SOLELY on the basis of MR. That is what she wanted to fight for~ the rights of the cognitively disabled to be offered the same opportunities as those without that diagnosis. CHOP righted the wrong the DOCTOR imposed upon the family (not the hospital as an entire entity) and gave them the meeting they expected to have and deserved to have from the start. Trying to compare the lives of innocent children with medical issues to criminals in need of transplant shows a weak understanding of the issues in this community, not to mention an ignorance beyond compare. As someone who purports to be a mother of a SN child herself as Frustrated Mother does, I cannot do anything other than shake my head in shame for her…a mother fights for her child- PERIOD. Where is the shame in that?

    How about some reality check now: All Chrissy did was write an emotional post about her experience with the transplant team at CHOP. Before she could even get dressed the next day to begin her so-called ‘lifelong fight’, the story had already gone viral. As I said in an earlier post– you have a lot more accusatory finger pointing to do at thousands of other people who were outraged at what she wrote- not because she wrote it, but because of what the doctor was saying: in essence, because your child is Mentally Retarded, it does not matter WHO gives her a kidney, she will not be granted a transplant hearing- she will be denied. No talk of the risks. No options for the parents. A death sentence handed down by the doctor– and the only reason HE insisted was the MR diagnosis. I am sorry, but a parent who does not find fault with that explanation is beyond reproach; parents of children with cognitive disabilities deserve the same rights and parents of children without– children with MR deserve the same rights as children without. THAT is what was written about.

    As for UNOS (since you insist that is an issue here), what is the crime to allow CI/MR children on the list? In the end, there is still the priority issue, and no one has suggested or claimed that a child with multiple medical issues deserves to take priority over a child who has been on dialysis for 7 years…where do those implications come from??? As for a child begging to die and the response from Fairplay, it is obscene and faulty to suggest that that will be the case for Mia. How can ANYONE claim to hold that sort of knowledge of the future for ANYONE? How do you know that she might not have the transplant and be a success story? NO one does, and to pass judgments about the value of her life on speculation like that is insulting and ignorant.

    Now that you have plead your case here, please leave our site. This is where parents go to support one another– not “dislike” posts by parents that offer words of encouragement and support to one another. Whether you like it or not, CHOP righted a wrong, everyone is happy that they did, and a decision about the next steps to take will be made by the parents and NOT the world…and especially not by people like you.

  27. KevinO says:

    Ok, as the administrator of the site, I have been liberal about letting people speak their words…to a point. I think we’ve reached that point. If anyone would like to continue this discussion off line, please let me know and I will provide email addresses with permission. I can be reached at admin@wolfhirschhorn.org. Thank you for all of your views on this topic.