A fan asked me to post this – her son needs a kidney, but she is scared what will wind up in the comments. On a dark humor note, at least there is the potential for a bunch of comments cursing me out.
Today, my nine year old son had his seventh surgery. Seven surgeries seems like a lot to squeeze into nine years…but they feel like even more when I stop to consider the fact that they all happened over the span of just twelve months. Last year, on June 26th, my son (nicknamed “Little Pom” after his mothers affinity for all things Pomegranate) was admitted to Childrens Hospital of Michigan and diagnosed as being in End-Stage Renal Failure. At the time of his admission, he had 10% kidney function; and was totally asymptomatic.
Thus began our journey into the world of providing constant care for a critically ill child, a “kidney kid.” We learned how to perform dialysis nightly at home. We learned how to care for a catheter- first through a foley catheter, then a supra-pubic catheter. Eventually our family graduated to the miraculous Mitrofinoff, which allows him to feed a catheter tube into an opening created in his belly button to drain his bladder…a process which he will have to do 4-8 times a day for the rest of his life. We learned how to give painful injections once a week- just one of the 20+ medication doses we would dispense each day. We learned what to feed him and what could kill him. We learned that he desperately needed a kidney transplant.
Over the past 12 months, I have held by child as he cried himself to sleep, despairing over the painful medical procedures, the mockery of his catheter by classmates, the diet and activity restrictions. I cannot count the number of times I have heard my only child whisper to me “I wish I’d never been born.” Throughout this period, my husband and I have comforted him with the reassurance that Daddy was going through the process of being approved to be a living organ donor. Getting a new kidney became my little boy’s panacea- the hope of which gave him comforting knowledge of a world without so many restrictions, mean comments, painful days. We rejoiced together when it was determined that my husband was a tissue match for Little Pom. This brought us so very close to the hoped-for day when dialysis would end and something resembling a normal life would once again be possible.
On Monday of last week, we found out that the transplant team would most likely not allow my husband to move forward as the donor. His blood pressure was a bit high and they wanted someone who had a stable b.p…not a “controlled” one. That was the first blow. On Tuesday of last week, I lost my job. The Christian nonprofit I worked for finally got sick and tired of the amount of time I spent away from work caring for my son during his many hospitalizations, surgeries, clinic visits and sick days. Today, Little Pom had surgery number seven, moving him one step closer to being ready to receive a donor organ he so desperately needs.
Not everything in our life is tragedy however. Make-A-Wish is sending Little Pom and our family on his dream trip at the end of this month- a week on the Nickelodeon Cruise ship. Next week, he’ll get to go to sleep away camp for the first time, at a site run by the National Kidney Foundation and staffed by his very own doctors and nurses.
My little guy has been so touched by the outpouring of love and support these two organizations have shown him that he came up with the idea of doing a lemonade stand to raise money for the NKF, so that they can fund research that might one day provide a cure for the condition that caused the damage to his kidneys and to raise awareness of the need for organ donors, by offering his customers the chance to sign a donor card right there and then. I am so proud of his willingness to engage in his little act of Tikkun Olam, reaching out to the community through his lemonade stand and taking a proactive step to support his own eventual cure. Even in the midst of fear and stress, pain and poverty, our family is richly blessed.
You might be asking yourself, “this is all well and good, but what the heck does it have to do with Heshy’s blog?” Because I wrote to him to ask if he would take a moment to remind his readers that each of you carry within yourself at least one mitzvah in life, and up to eight mitzvahs at the end of life. We have been taught that to save one life is to save the world. Organ donation, both as a living donor (through the sharing of a kidney, blood or bone marrow) and later, when we no longer need our organs, is the greatest mitzvah any Jew can perform. There are hundreds of thousands of families like mine, children like Little Pom, who desperately need a donor. Many of those critically ill family members will die before a donor organ becomes available.
Please, if you have not yet taken the time to do so, register yourself as an organ donor. You can do so online at www.organdonor.gov or the next time you renew your drivers license. Be sure you speak to your family about your decision, so that they are aware of your wishes. This is especially true if you’ve signed a donor card, but never formally placed yourself on the donor registry. If you do not formalize your decision, your family has the authority to override your decision to donate if ever you were unable to communicate your wishes. Finally, please consider becoming a living donor. Giving blood is easy. Bone marrow is almost as simple; you can add yourself to the bone marrow registry and they will match you up with someone who desperately needs the gift of life. Finally, while it seems a bit overwhelming, consider becoming a living kidney donor. You can learn more about what this involves (and the Jewish perspective on living donation) through www.kidneymitzvah.com.
Every Shabbat, my son’s face shines when he hears his name read before the Mi Sheberach. Knowing that others are praying for him is a tremendous comfort for all of us. As he continues to sell lemonade to raise money for the National Kidney Foundation, I take comfort in the knowledge that HaShem has a plan for our lives and that no child suffers in vain. Perhaps, his little mitzvah will become the start of something great, something that results in a cure for Little Pom and children like him. They tell us today that once someone is diagnosed as being in End-Stage Renal Failure, they are always considered to be such, even after transplant. This is why Little Pom will never be able to fulfill his dream of following his Iraq Veteran Daddy’s footsteps and serving in the military. I don’t believe that. I truly believe, in my heart of hearts, that HaShem can cure Little Pom. I am absolutely confident that the life he leads now is NOT his future. And I am just as confident that this future will come into being through the prayers of our Jewish community and the mitzvah of organ donation. Thanks for taking the time to read this. If you’d like to learn more about Little Pom, his medical condition, or how to be an organ donor, feel free to visit our website www.kidneykid.com.
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{ 22 comments… read them below or add one }
Folks, if you haven’t signed an organ donor directive and informed your family of the decision please do now. The good you can do is incalculable.
And while you’re at it, take a moment to schedule a blood donation.
if ur jewish, dont u know that jews cant be organ donors?
why post this on a jewish fan based blog?
Too many people are misinformed about organ donation and Jewish law. Go to hods.org for the answers and to receive an organ donor card.
I just filled out an organ donor card on Wednesday. And now that I’m off meds I think I can safely give blood.
It seems to me that “ask your LOR” would be more effective than either reading comments on a blog saying that organ donations are forbidden, or going to a website that says that organ donations are not forbidden. Or, in my opinion, an even better option would be discussing with your LOR, reading the various sources, and deciding what to do.
Story is tragic indeed, not much to do with satire.
Hods seems to have found a way for organ donation after death, kidney transplants from the living a perfectly acceptable.
I encourage everyone to go on the donor list, all it takes is a simple cotton swab in the mouth and 2 or 3 forms to fill out (for marrow transplant list).
Kidney is more serious, it will obviously affect/alter the donors lifestyle permanently.
Still it is a great mitzvah, though personally, I can’t say if I would do it for a total stranger. Yeah, I know this sounds selfish, as if God forbid one of my loved ones needed it, I would be very happy to receive one from a stranger. Just being honest.
Hope this works out for Pom and Mom.
Good Shabbos.
Another type of living donation to consider is umbilical cord blood donation. Umbilical cord blood–the blood left in the umbilical cord after a baby is born–contains stem cells that can be used to treat disease. The doctor or nurse attending delivery can collect the blood. This takes only a couple of minutes & doesn’t compromise the mother’s or baby’s health in any way. There are public cord blood banks in various parts of the country; anyone interested can ask her OB for more information & for the paperwork to fill out.
Umbilical blood donation doesn’t hurt at all (except for childbirth itself) & doesn’t even require a special trip to the donation center. Another great aspect is that there are no minimum weight requirements as there are for conventional blood donation. I don’t weigh enough to donate blood, but I’ve donated cord blood three times.
I’ve been a card carrying member of HODS ever since I first heard of it. I donate blood and platelets when I can. Thank G-d, I have three healthy children, I do what I can to pay it back. (pay it forward?) I also registered with that National Marrow Database. Because diabetes is so strong in my family, I doubt I’d ever be allowed to donate a kidney (at least as a living donor). But if it can save someone when I no longer need it (hopefully many many years from now), I want them to have it.
Jewish Person, we’re talking about saving a life here. Just about anything is permitted in order to do that.
All one has to do is visit the webside hods.org and you can see interviews of neumeous respected Rabonim all of whom agree that organ donation is alowed as long as it is supervised.
If you want to donate your organs after you die, the most important thing that you must do is to tell your family members clearly how strongly you feel about this. Organ donor cards are useful as evidence of your wishes but in the final analysis your family will decide whether you donate, whether or not you carry a donor card. It is a common misconception that if you have a donor card, the doctors will automatically take your organs. They will NEVER override the wishes of your next of kin, even if he/she is someone to whom you haven’t spoken in years. If you are in this situation, you might want to speak to a lawyer to see if it is possible in your state to give a medical power of attorney, clearly specifying that it includes organ donation, to someone who you know will respect your wishes.
my heart goes to little pom and his mom.
Avner, I have to respectfully disagree with what you say. Even if I could trust everything I read on the internet, there are plenty of halachic issues where there are gedolim on both sides. Just looking at a list of gedolim who hold the “yes” opinion on a question doesn’t fully tell me what I should do, based on my situation, my derech, and my rebbe’s derech. For that, I have to speak to my rav.
It seems to me that pikuach nefesh is not obviously a full answer. I’m not saying it’s not an answer, just that it isn’t obvious to me that it is. For one, a typical case of lifesaving involves a specific person and a specific action. Putting yourself on the list doesn’t have this. For another, we are not required to give up or unreasonably risk our own lives to save another. What is a kidney transplant considered in this regard – reasonable or unreasonable?
MO & Proud,
Just to reassure you on one point:
You are absolutely correct that if ALL someone does is sign an organ donor card (of the sort you can print off), then their next of kin could override their wishes. However, if one puts their name on the national organ donor registry (through the http://www.organdonor.gov or through their drivers license renewal) that is considered to be definitive and the next of kin cannot veto the decision. The potential donor, however, could remove their name should they change their mind in the future. Although goodness knows, I hope they wouldn’t!
To Frum Single Female: thank you for the kind thoughts.
To Puzzled: One does not become a living donor simply by joining the organ donor registry. Doing that only means that organs would be donated at the time of death. A living donor is often a friend or relative of the patient in need; however there are programs (such as Kidney Mitzvah) that will help pair a willing donor up with a patient. In any case, living donation always involves the saving of a specific person’s life through a specific action.
frum single female: did you just offer your heart for donation?
i’m actually interested in living kidney donation, and a little while ago i received an urgent email from HODS looking for a kidney for a recipient who had O blood type (i am O+). i emailed back that i might be interested, but would like to get more information. i was strongly discouraged from donating by the founder for HODS…can anyone shed some light on why this might be? maybe because I am too young (I am 21)?
Jelen,
I can’t imagine why that would be. You’re not too young. Did you ask him about his rationale? Either way, if you are truly interested in pursuing living donation, contact Chava at http://www.kidneymitzvah.com. She matches willing donors with recipients and always needs more of the former!
Best of luck to you.
That’s weird, Jelen (and a wonderful offer for you to make). My cousin donated a kidney to her brother. I couldn’t think of a greater gift. I am an organ donor. One more way to recycle. I think everyone’s however they want to be, in olam haba.
We interviewed a member of H.O.D.S recently for a PBS Wide Angle special tangentially related to organ donation. The rabbi we interviewed had an interesting perspective on the Jewish faith and organ donation. http://www.pbs.org/wnet/wideangle/episodes/heart-of-jenin/video-does-your-religion-allow-organ-donation/5093/
My thoughts and prayers go out to Little Pom and his family. I am a blood donor EVERY 2 MONTHS. My husband and I go religiously every 56 days and donate to a child with cancer. I am also a stem cell donor x2 through http://www.giftoflife.org. Blood and marrow donations don’t require you to give something that you may need for yourself in the future. Blood and marrow rejuvenates itself after a few weeks.
May Little Pom have a speedy recovery.
Little Pom’s mom, your story is an incredible one. There are other organizations out there which can help you cope with a number of things. I know about some of them because I have an immediate family member who also has had many uro-genital issues and has a Mitrofinoff as well. I don’t know how halachically permissible organ donation is; every person should consult with their LOR and do what’s best for them. However, if you need any assistance from someone who knows just a little bit about what you’re going through, don’t hesitate to contact me!
Good luck!
Ralph,
I’d be thrilled to get the info on whatever resources you may know about. You can reach me through the contact page of LP’s site: http://www.kidneykid.com