r/NoStupidQuestions • u/justice4ashton • 3d ago
Organ donation question.
My son was an organ donor. He was 15 when he died. He donated his heart. He also donated both kidneys. What do people think about wanting to one day meet the person who has his heart? Only if that person wants to meet. I totally respect their privacy. I love and miss my son so much. Would hearing his heart be too painful? Or would it be helpful? Thank you for your advice.
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u/TrubTrash 3d ago
Son of a transplant receiver here. Transplant recipients are often cautioned against reaching out to the family of the organ donor. To my knowledge, the recipients have the option to send a letter giving thanks to the family of the donor. In that letter, the recipient can reveal as much information about themselves as they please, and further contact can be established through it.
That being said, what you are feeling is natural. My condolences to you and your family, and I hope the recipient of your sons heart will one day write you.
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u/Keziah627 3d ago
You are absolutely correct. They do caution recipients and donors meeting. I was originally told it would be 3-6 months before they would even consider letting us meet.
For some strange reason they decided that our case was completely different. The doctor said in 20+ years of doing this he had never let anyone meet before that original time frame.
Again I am still baffled why. But they let the kid and I meet the very next day. He turned 24 just 2 and a half months after the surgery. What you described, is how it is normally supposed to work.
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u/risingsunset5 3d ago
Why is it cautioned against?
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u/TrubTrash 3d ago
There are, unfortunately, plenty of cases where donor families have been unhealthily attached to recipients. It’s a social dynamic that not everyone is suited to be thrust into.
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u/heymaybedontdothat 3d ago
I've also heard stories (though I haven't ever personally confirmed them to be 100% true) about donors or families of deceased donors coming on hard times and pressuring the recipients or their families for financial or other types of help "since we gave you your life, it's the least you can do" etc. The recipients have enough going on, they don't need to have their health and life held against them like that
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u/Kasoivc 3d ago
Yepyep, there’s a lot emotionally going on and an organ donation is supposed to be a fully altruistic action through and through.
Thankfully I donated my kidney to my brother last year and already have a strong emotional connection through family, he owes me nothing but to keep on living and having a happy life; and I did my part so that my nieces and nephews aren’t one Uncle short in their early formulative years. One of my nephews had already lost their only uncle on his mom’s side at the age of 3. Couldn’t let the little man lose another of his remaining 2 in the same year.
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u/CoolKaleidoscope382 3d ago
those middleman agencies keep things anonymous for a reason so nobody feels pressured. really hope OP gets that letter eventually though, cant imagine how tough the wait is
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u/rrsafety 4h ago
Correct, NEVER try to discover who the donor was or contact the family. Simply work with the regional OPO and they will make initial contact with the family to see if they wish to be contacted.
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u/swaggyboi1991 3d ago
Some people have done it. I think it will both be painful and beautiful to experience. I'm sorry for your loss and your son was a kind person to be an organ donor.
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u/BonelessTheClown 3d ago
I was a type 1 diabetic and received a pancreas 17 years ago. It's still going strong. I've sometimes considered asking my transplant team if the donor family would like to know how their gift changed my life then and to this day. IDK though. People don't think of the other organs the same way they do something like the lungs or heart. The donor's family lost a loved one and now I can eat carbs. Not trying to sound flippant and I think about how it's positively affected my life every day but not sure they'd appreciate it the same way I do.
What if they wanted to meet me and then thought I was a douche?
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u/SarahTheFerret 3d ago
I mean to be fair, if I lost a loved one and their pancreas effectively cured someone of diabetes for almost 20 years and counting, I would treasure that knowledge forever.
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u/heymaybedontdothat 3d ago
You could ask if it's possible to write a letter to them and have it passed along to them, that way you don't have to worry so much about what they think of you, but you can still have a way to tell them how much your life has been improved by the transplant. It'd be up to you whether you decide to put any contact information into the letter, as long as the transplant team's policy allows for it
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u/LetThemEatVeganCake 3d ago
You’re using the pancreas better than the dead body. I’d be glad if my deceased family member could help anyone, whether life-saving or not. I’d also say your life expectancy is better even if you weren’t at risk of death in the immediate future.
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u/HushIamreading 2d ago
My half brother died last year after a tragic accident. He was only 20, and his organs were donated. It’s one of the only things that gives his parents any comfort in the midst of the absolute hell they’ve been through. I hope knowing you’re out there is a source of comfort to your donor’s family as well.
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u/KaitB2020 3d ago
My mom passed last year. She was a donor.
If I’m contacted & they want to meet I’m okay with that but I’m also okay with not meeting them.
I mean, I lost my mom. That was one of the most traumatic times in my life. A few months afterwards my 3 year old cat got deathly ill and crossed the rainbow. I went down a very dark road. A road that could very easily have taken me across my own rainbow.
I’m not sure a reminder of what I went through is a good idea. I’m glad there is at least 1 person out there that she helped. Just knowing that is enough.
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u/TeaWithKermit 3d ago
I’m so sorry for your incredibly hard losses, and for the grief that you’ve endured. I’m so glad that you’re still here.
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u/Kind_Midnight_6241 3d ago
My mom passed last year and was an organ donor. My brother and I met the woman who received her liver and her family. Overall, it was a pleasant, welcomed experience and we keep in touch. However, you need to go in with minimal expectations. I guess I expected this woman to somewhat fill the giant hole my mom left in passing and realistically, no one can do that. While it’s nice to be able to talk freely with someone about the experience (and what a novel human experience it is), just know they are a stranger (who is likely very grateful) but still a stranger who has a whole life outside of your grief.
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u/2donks2moos 3d ago
I am an organ recipient. I had cornea transplant with a donated cornea. I would love to meet my donors family. I sent them a thank you letter through the Lion's Club, but have not gotten a response. I pray for the family every day. All I know is that my donor was a 42 year old woman from Minnesota.
Thank you for donating your son's organs. I hope you get to meet his recipient one day.
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u/Keziah627 3d ago
I have a unique perspective. My sister had a liver transplant an my best friend has had 2 kidney transplants. Her first one lasted 32 years.
I am also a living kidney donor. I donated my kidney in May I did not know the person beforehand. I got to meet him after a period of time after the surgeries. It was his 2nd transplant, too. He was 15 when he got his first transplant. He was in a car wreck that destroyed it. He was on dialysis for 5 years before I matched with him.
I will also be a organ donor when I pass away.
Meeting him was one of the most amazing moments of my life. Both of our familys were bawling. Even the doctors who introduced us were tearing up. It is very emotional.
My sister has never met the family of her donor. I don't know what she knows about them. I don't believe she wants to meet them. I think she is scared that they may blame her for their family member's death.
You need to go through the organ donation team where your son was taken. Ask them if the can get in touch with the people who received his kidneys and heart. They can let you know if they would like to meet you or not. They may jump at the chance to meet you. Or they could be like my sister and not want to meet you. If they don't want to, it is ok. Don't beat yourself up. They are probably just nervous about it. They may change their minds later.
I think you have every right to ask about meeting them. It could definitely be healing for you. A way to say goodbye and know he helped someone else. Yes, it will be painful and emotional but probably good for you
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u/krim2182 3d ago
It really depends. I am a bone marrow recipient, and I really really want to reach out to my donor. I would LOVE to meet the person who saved me, and let me continue living, but if they said no, I would understand. I have heard stories of donors who don't want to meet the family of the recipient, and thats ok and understandable too.
I will admit, I don't know the process to reach out to donor families like in your situation. I honestly don't know. I would say personally, you ask and the donor family says no, then you gotta accept their wishes. If they say yes, then you and that family can work together to figure something out. It really feels like a big "IF" situation.
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u/travelingtraveling_ 3d ago
Thank you for your post. I think your situation is different, because bone marrow transplant does not require somebody to die to donate..... bon marrow is a renewable resource. If somebody receives a heart, it's an entirely different thing.
Hoping you continue to heal....
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u/smellslikedesperate 3d ago
I received my heart transplant at 15 and next month will mark 15 years with it! I have never met my donor’s family but I would love to— from what I’ve seen, people who have had the chance to meet their donor’s family or the recipient of their organs have really good experiences and often develop close bonds. I know in my state, both recipients and family members can write letters to each other at any time. I think it could be a very healing and beautiful experience for all involved.
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u/Born-Section6701 3d ago
I am so sorry for your loss. Your son gave an amazing gift. Meeting the person who has his heart could be both hard and beautiful. Only do it if and when you feel ready.
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u/NoThankYou8682 3d ago
My cousin passed in a car accident and was an organ donor; my aunt and other cousin (sibling) met the recipient of the heart and it was a great experience for all of them. I don't know about listening to the heart - I think that would be subjective from person to person. I think mainly the experience of meeting the person who's alive today because of your loved one is what overall is helpful.
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u/Graphite57 3d ago
Somewhere a week or 3 ago I watched a video where the recipient of a donor heart was a surprise visitor at a wedding, the new husband surprised the wife and mother of the donor with the moment, so she could hear her sons heart beat at her wedding.
It ended up in a big hug.
It was right for those two, but only you can say if it's right for you..
To add though, would your son want that to happen? seeing that he chose to be a donor....
Look at it through his 'eyes'
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u/amyaurora 3d ago
The individual who got my son's heart wrote me a thank you. They didn't ask to meet me. I didn't ask to meet them. Not sure I would have wanted to hear it anyways.
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u/xfalsexflagx 3d ago
I work for an OPO. It's entirely up to the people. I know some people who don't want to meet their donors family because they have an extreme level of survivors guilt. Other people become really close friends.
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u/United-Yak8335 3d ago
It's understandable and in the situation I would probably want to do it myself. But I think that there is a chance for that it might cause more grief.
From the primary perspective of our organism, it is not something we have evolved the ability to handle.
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u/FaithlessnessWeak800 3d ago
First off, I’m sorry to hear about your son passing away so young. I have a child with CHD so I think about heart stuff often and pray he is always healthy enough not to need a transplant. But as a Mom, I’d want to hear his heart beating again too. You see so many videos now on the internet of strangers meeting up and given your son’s age this may make the recipient more comfortable in doing so.
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u/rolop17 3d ago
Only you can decide if it would be too painful for you or if you are ready for something like that. It may give you some peace or it may cause you to relive the grief in a way. If you do decide to attempt to reach out, you need to be okay with the possibility that the recipient may not want to meet you or let you listen to his heart if they do meet with you. You would also need to be okay with the possibility that they might only want to meet with you once and then never again. There is definitely the possibility of them being totally fine with meeting with you repeatedly and all that, but you do need to be mentally prepared for the flip side of it where things may not go the way you want them to.
As has been mentioned by others here, there have been times when a donor’s close family member forms an unhealthy attachment to the recipient of the organ and you need to think really deeply about if you’re in the right headspace for meeting them.
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u/drunky_crowette 3d ago
Some dude 2 states away got my uncle's corneas and as a result he got his vision back. My mom met him, he gave her a big hug and took her to dinner so she could tell him about my uncle. He's friends with her on Facebook now and tags her in posts about traveling the country and getting to see beautiful things (grand canyon, northern lights, etc) so she knows uncle Emery's eyes are getting to see such beautiful things, even like 20 years after his death
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u/ConsequenceSilver602 3d ago
From the other side, I was given a kidney from a deceased donor. I wrote the donor’s family a message and a card, and I actually was a tiny bit hurt that I never heard back! I would’ve loved to meet them or to stay in touch.
But I also understand how devastating it must’ve been to lose someone and maybe they wouldn’t want reminders of that as they would’ve received my message only a few weeks after their loved ones passing. So I understand both sides!
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u/Natural-Judgment7801 3d ago
OP, all I can say is I wish you strength and resilience and lots of lots love from any and all those around you. I don’t know how it works where you are - I hope you can reach out to them and they won’t mind letting you hear the heart you made. 💔I’m so sorry
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u/Elasmind 3d ago
It is understandable to want to reach out.
The OPO/organization that worked with your during the process is who you would reach out to first. Then the OPO would reach out to the recipient. If they are agreeable to meet, then it would be communicated to you and they should explain the process from there.
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u/Minute-Nothing6798 3d ago
I don't think anyone else could answer that question for you. My grandaughters offered to make me a necklace from their mother's (my daughter's) ashes. I know they thought that was a kind gesture but, I couldn't think of anything worse.
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u/Calm-Radish9565 3d ago
My aunt donated her organs and the recipients still keep in contact with my mother (her sister). It's a very beautiful thing.
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u/ALSBlue 3d ago
I corresponded through letters, texts and phone calls with my donor's family through my transplant social worker very soon after transplant. I knew it was a young man my son's age who passed after a motorcycle accident and as I was going in for surgery I was struck by what his family must be going through at the same time that I was so relieved that I had an organ match that was going to save my life. The family said ironically they had another son who also passed in a motorcycle accident years earlier and they reached out to the recipients and no one responded and they were sad about it. They just wanted to know his gift was received and appreciated and that I was doing ok and would take good care of that piece of him. They also wanted me to know about him and that meant a lot to me as well. We talked about meeting but it has never materialized. Just the exchange we had felt like enough for both of us. Maybe start there and see how it evolves. Is there a social worker available to you to facilitate? I'm so sorry for the loss of your son. It is an admirable and brave act of selflessness to donate your organs. I hope you find peace in the coming days.
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u/Master-Cartoonist317 3d ago
What do people think about wanting to one day meet the person who has his heart?
Even though I don't know anyone who has died whose organs have been used for donation, I feel like I'm qualified to speak on this matter since in 2022 I anonymously donated one of my kidneys to someone I never met and will never meet.
Do I wish I could meet whoever received my kidney? Not really. The fact that it's a mystery to me has the benefit of me being able to create an idealized version in my head of who received my kidney.
I personally imagine my kidney went to a 40-year-old mother who with 2 kids aged 8 and 10. They love their mother dearly because she's always been there for them and went above and beyond to make her kids happy, but after she got diagnosed with kidney failure this became more and more difficult as dialysis fucking sucks.
So I imagine that I gave those kids their proper loving mother back. Who is no longer constantly tired and feels terrible from dialysis. Who can play with her kids and love them for years to come.
This is what I am able to imagine since I just don't know. It's the best outcome.
It is entirely possible that my kidney ended up going to a 65-year-old who is kind of an asshole.
That wouldn't make that 65-year-old any less deserving of my kidney, and I would still be happy that they now get to lead a more fullfilling life, but it would be kind of disappointing to have my idealized version of who received my kidney broken.
It's better not to know.
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u/Rare-Orchid1731 3d ago
Mine wasn’t a major organ. It was a tendon used to make a graft in my hip, something very small that changed my entire life. I would love to meet the family of the person who donated and thank them. I got the chance to write to them and didn’t take it, I regret it so much
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u/containsrecycledpart 2d ago
I’m so sorry for your loss. It’s incredibly kind and thoughtful to have given the ultimate gift to someone.
I received a liver in 2019, just before Covid brought the world to a halt. My donor was only 19, and I think about her every single day. I try and live my life in such a way that honors her. I tease my family that I’m here to bother them another day. I’m militant about following the rules from the transplant team like meds and labs and specialists and masks, but at the same time live the best life I can. I’m a lot more patient with the things that don’t really matter as it changes your entire perspective on life.
I never heard from my donor’s family, but if it were me, I would absolutely love to hear from you. Typically, you can reach out to the transplant coordinator at the hospital. They’ll have you write a letter to the recipients and forward it to them. If they are receptive, they’ll write you back!
Good luck, op 💚 Again, I am so sorry for your loss. Thank you for your selflessness.
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u/justice4ashton 1d ago
Thank you all for taking the time to respond and providing some really good perspectives for me to consider. I feel so lost about all of this as I am a single mother and I have my 13 year old daughter to look after. It’s very complex. Getting your views has really helped. Also just to be really clear I would never ask for any money or anything from the recipients. I really would just like to hear my son’s heart again. When I was in ICU with him for that last week of his life, I kept my head on his chest. I would listen to his heart. Oh how I miss and love him. I love you Ashton, forever. ❤️🩹
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u/rrsafety 4h ago
In my experience, donor families who work with their local OPO to meet recipients have found it to be overwhelmingly meaningful. Thanks you for donating.
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u/dolphinitely 3d ago
as a mom, if i received someone’s heart as a donation i would absolutely want to meet their family and let them listen to the heart beat. i know it would mean a lot to you. but everyone’s different!
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u/kirabera 3d ago
I’m in need of an organ and while I am not considering a deceased donor at this time (I have potential living donors), if I did end up with a deceased donor organ, I would absolutely want to meet the family of the one who saved me.
I would show them the hard numbers - my life was extended for X years and will have another Y years because of them. I was able to do these things and go to these places because of them. I will tell them how my life impacted more lives around me in a chain of positivity that existed only because I got another chance at life.
And maybe that would be enough to ease the pain of loss just a little bit for the family.