Last night I ended up on the gross side of youtube. I watched a series of videos from a UK TV show called “Embarrassing Bodies.” Looks like a really great show, for people who are into gross things (which I am, so it is). Anyway, one memorable story involved a 9-year-old child with horrible verrucas on her feet. As it turned out, they discovered she had some kind of immune disorder. As I recall (sorry, I watched a lot of gross videos), she was lacking a bunch of antibodies, which is why her body wasn’t fighting off the warts like most people do. Anyanyway, the family was all tested for bone marrow compatibility, and her sister–a minor–ended up donating. The most recent update says that the afflicted kid is getting better and will be able to return to school soon. Hooray!
But naturally, I wondered: what happens if a child doesn’t *want *to donate their bone marrow? Or heck, a kidney? Are they allowed to say no, or is that completely up to the parents? Does it matter if the child refusing is 5, or 12, or 17 and 364 days old? What if the child has extreme needlephobia (complete with vasovagal response)? Would the child’s objection be factored in more strongly if the transplantee wasn’t a blood relative? Can a child be compelled to donate marrow/organs to a compatible stranger?
I’m also interested in opinions regarding whether or not children *should *be able to be compelled to donate things, but let’s not go so far down the rabbithole that a mod moves this thread to GD. Because I don’t like GD.
Those are interesting questions. No surgery is 100% safe. Arguably, it could be child endangerment. You’d hope that the health of the donor child would be an important factor, especially when there’s reasonable possibilities of severe complications or long-term health problems.
I have heard that in cases involving potential donors who do not want to donate sometimes the doctors screening for compatibility will say something has been found to eliminate the person as donor, thereby getting said person off the hook without being subjected to emotional blackmail/distress/browbeating by relatives and friends. I don’t know if that’s actually true, or how often it happens, but such a tactic could be used in the case of a potentially donor child whose parents want for force a donation that is not in the best interests of the donar.
My youngest sister, at 12, donated bone marrow to my middle sister, 17, a number of years ago and saved her life. She was the only match. At the time she was gung ho to donate, but now she says she was never given the choice. She tells my middle sister in the heat of an argument that she ‘wishes she had never donated because then you [middle sister] would be dead.’ Harsh.
Not sure how things like this can be changed apart from excluding minors from the donation pool. As I recall, there was a story about a family with a child that had a fatal disorder/cancer and they purposefully got pregnant to try for a sibling that was a match. I know they did get pregnant and I think the baby was a match. I’m not sure how it all turned out.
There was a movie about this, right. It was one of those cry-fests I avoid. But yeah, the kid ended up getting a lawyer to make her parents stop using her as a spare-parts maker for the older sister. It was a fucked up story.
I was 12 and my younger sibling was 2 when our entire family was tested for a bone marrow match for my father. I wasn’t a match, and we didn’t test my sibling because he was too young, but several of my cousins (around 8-10ish?) DID, and we were under the impression that they volunteered, but knowing my cousins and our family, they were probably coerced into doing it.
It’s a rough go for kids regardless, at least in my opinion. I was beyond devastated that I didn’t match, but on the other hand, I was petrified beforehand that I would, and have to go through the transplant process. I felt like my fears had jinxed the procedure, and it was my fault that we didn’t match.
And my relatives didn’t “force” me to try - they didn’t have to. Between the emotional manipulation and the raging guilt trips and the repeated mentions that it was the only chance for my father to survive, it was sort of a given that we’d all do it. In hindsight, I think that’s pretty shitty to do to kids also.
What’s the alternative? Would a person really be a better person if they died and left their kid without a parent rather than test them for a match/get the transplant? If I lost my mom as a child and later found out I wasn’t tested because she didn’t think it’d be fair . . .I would be so angry at every adult in my life that made such a choice for me.
And, frankly, if my son needed a donor and none could be found I’d be at the fertility clinic the NEXT DAY. I wouldn’t have the slightest qualm about that.
My son is 20 months, but no, I wouldn’t make it a secret. I’d treat like you treat an adoption–you strive to have something that is always known and isn’t a big deal because it isn’t. I’ve no doubt I’d love such a child, whether or not they were a match. Kids are conceived for much worse reasons every day.
I don’t have children myself, but I always figured that if I were ever in such a situation, the story would be something like “we had always planned on having more kids long before X got sick—this just meant us having you a little earlier than we’d expected.”
The American Academy of Pediatrics published a policy statement on Children as Hematopoietic Stem Cell Donors. The summary ofthis detailed paper:
Donor advocates are recommended for minor candidate donors. These professionals are not on the patient’s treatment team and their involvement should begin when testing the potential donors is considered. Donating bone marrow or peripheral blood stems cells can cause rare problems; donating organs is quite a different matter. Donating cord blood causes no problems at all; obviously, the parents make* that* decision.
One Doper mentioned conflicted feelings while being tested as a potential donor. There should have been somebody there he or she could have talked to…
But it’s not the parents’ qualms that are at the crux of the matter–but rather than kid’s.
The question is not a trivial one. I don’t know how someone can be in favor of personal freedom and privacy and yet not be troubled by the idea of parents using one kid as spare parts for another.
Like you, I don’t know what a good alternative would be. But it still bothers me that a kid would feel compelled to put their own life at risk, not out of love for an older sibling (who they may or may not have fond feelings for), but so that everyone will love them.
When I put Little Johnny in the car to ride along while I take his sister to soccer practice, I am putting his life at risk. Is the risk of death from a bone marrow donation really that much greater?
There’s a difference between major surgery and riding in a car. If there wasn’t, doctors wouldn’t make a big deal of having informed consent from their patients before operating.
And if the risk ain’t no biggie to you, would you be in favor of mandatory bone marrow and organ donation? I wouldn’t be. I plan to donate my organs after I die, but I don’t want anyone calling dibs on any of them before then.
Not to keep picking on you, but would it matter to you if the recipient was unknown to the child? Or if they were the child’s classmate or an acquaintance at church?
If you had a child that was adamant about not going under the knife, what would you do?
I honest to god don’t know what I’d do, which is why I would think parents should be the ones to decide. What I chose to do would have a lot to do with how I thought the kid would feel about it later in life. I wouldn’t let a three year old’s fear of the hospital mean her daddy died, because I think she’d regret that later. As the relationships get murkier and the children get older, it gets more complicated. But if not the parents, who?
I mean, really, if you were talking to a woman and it came up she had terminal cancer and hadn’t let her kids be tested as matches because there is a 1.3% of “serious complications” and they were scared, and so she thought it would just be better for them if she upped and died and left them to live their own life–would you really walk away thinking 'Yep, that woman is doing right for her kids. It’s nice to see a mom who isn’t a selfish bitch for once"?
My husband has a horrible genetic disease. It’s probably worse than it could have been because the drug to treat it tastes awful and he fought his mom about taking it and she, guilt ridden over giving him the disease in the first place, often backed down. Was that good parenting?
In the case of bone marrow, I would have few qualms too. But the risk of complications is upped with organ donation. So I can say that while I would have no problem strongly encouraging my imaginary kid to donate his bone marrow, I would be more twisted up inside if it came down to, say, a kidney.
In the case of the hypothetical, I would try my best not to judge the mother’s decision. I don’t have to have an opinion on everything. Especially when it’s a decision I would never have to make.