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.
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.
OMG.OMG.OMG. I’m hyperventilating over here. I am praying for you every minute. Love you.
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
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.
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?
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.
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.
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.
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
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.
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
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.
Praying for you! Waiting to hear more updates too. Hang in there~ trust God…
http://researchnews.osu.edu/archive/orgtrans.htm
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.