Community Tard Baby General (includes brain dead kids) - Fundies and their genetic Fuckups; Parents of corpses in denial

Transplant is also an option, but infant hearts for transplant are rare, and that carries its own lifelong risks. I suspect that the South Carolina baby had other things wrong with it, therefore making treatment futile in its own way. :(
I googled it out of curiosity and yeah, the full transplant would at best extend to 12 years before they died. It seems this overly complicated surgery, like most surgeries, are best because it uses your own parts, thus no life long immunosuppresants to prevent organ rejection.

I wondwr how long it'll be until we can 3d print our own cells into organs, and if we would still need to take imunosuppressants? I know that the tech has successfully 3d printed live cells and even entire small organs already, though I believe it's only been small mammals.
 
I googled it out of curiosity and yeah, the full transplant would at best extend to 12 years before they died. It seems this overly complicated surgery, like most surgeries, are best because it uses your own parts, thus no life long immunosuppresants to prevent organ rejection.

I wondwr how long it'll be until we can 3d print our own cells into organs, and if we would still need to take imunosuppressants? I know that the tech has successfully 3d printed live cells and even entire small organs already, though I believe it's only been small mammals.
Can't be a million miles away. I would assume that theyd need many many years of successful animal trials before touching a human with such radical new technology because just who do you choose as the patient to make the big leap to the first major transplanted organ of this type? They need to have a good chance of survival to be able to guage the sucess of the trial so you had better not fuck it up for them.
You want a subject with no family ties and dependents who's willing to risk it and potentially die for science.
I guess such is the risk with many new things but few procedures are as high risk as a transplant of a major organ.
 
Playing devil’s advocate for a moment: what does the child have to gain from dying at home vs. hospital? If the answer is “nothing”, then she shouldn’t be moved. What the parents want is irrelevant.

There have been numerous occasions in the U.K. where parents endlessly fought against the doctors wanting to withdraw life support (Charlie Gard, Alfie Evans, Archie Battersbee) only to have the fight take a left turn (to demanding the child die at home/in a hospice) as soon as it became apparent that the situstion was hopeless.

These situations are always much more about defying authority than facilitating a comfortable passing for the child.
I'm with Dud on this. Major powerlevel in spoiler.

my mom was a hospice worker, she worked general which covered people of all ages, one included a 6 month child with debilitating seizures who wasn't conscious. Many people who are going to die won't die right away, some take days, other take months, some years, some live a somewhat average lifespan but need so much care it's easier to just place them in hospice. A good portion of the children who were moved from hospice to go home were somewhat conscious but not always, it was more for grieving families because a lot can't really accept it without seeing a body. It's why many still births, the mother is given the corpse to grieve. It is NOT a place people demand their children go out of necessity.
Imagine you had a parent who was dying in the hospital, you found out they'd live maybe a few days, and were possibly unconscious. Would you choose hospice/at home palitive care despite being more expensive, or just leave them in the hospital? What if the hospital is hours away? What if there are multiple desperate people that want to be there at thwir side but can't due to hospital policies? This is not black and white.

Edit to add: I don't blame the mom in the slightest. She is very OTT, yes. She's also way too open about private matters and comes across as unhinged, but how could that not break you? It's always possible for it to devolve into attention seeking to feel better over ir, but right now it only reads as a pathetic show of denial that just breaks my heart.

Can't be a million miles away. I would assume that theyd need many many years of successful animal trials before touching a human with such radical new technology because just who do you choose as the patient to make the big leap to the first major transplanted organ of this type? They need to have a good chance of survival to be able to guage the sucess of the trial so you had better not fuck it up for them.
You want a subject with no family ties and dependents who's willing to risk it and potentially die for science.
I guess such is the risk with many new things but few procedures are as high risk as a transplant of a major organ.
Don't forget about the very common 1 to 3 years before rejection or failure in otherwise healthy adults. Small children do not have the antibodies or strength to withstand something so demanding. A full heart transplant won't stop at the heart, you are sawing off all the bones around the ribcage open, then seperating several, extremely important veins and arteries, painstakingly stitching them to the new organ that you have to keep artificially beating until the full cross over (which can take like 12 fucking HOURS) THEN have to withstand healing from that with pretty significant pain killers because fuck that would hurt. Painkillers that are notoriously hard on the body and can weaken the immune system further, potentially damage the brain of a young child/effect developement. You'll also be at much higher risk of infection due to immunosuppressants that a toddler or infant is NOT vaxxed for, and we all know how much hospitals are hotbeds for infections.
 
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Don't forget about the very common 1 to 3 years before rejection or failure in otherwise healthy adults. Small children do not have the antibodies or strength to withstand something so demanding. A full heart transplant won't stop at the heart, you are sawing off all the bones around the ribcage open, then seperating several, extremely important veins and arteries, painstakingly stitching them to the new organ that you have to keep artificially beating until the full cross over (which can take like 12 fucking HOURS) THEN have to withstand healing from that with pretty significant pain killers because fuck that would hurt. Painkillers that are notoriously hard on the body and can weaken the immune system further, potentially damage the brain of a young child/effect developement. You'll also be at much higher risk of infection due to immunosuppressants that a toddler or infant is NOT vaxxed for, and we all know how much hospitals are hotbeds for infections.
heart statistically, is the most common to reject, while lungs are the hardest to transplant. Also let’s not even get into finding a suitable organ. There are often many dry runs (aka getting a call but only to find out the organ isn’t a good fit).

You also don’t get a say in what organs you get. Lungs often come from smokers and you can’t say no because you don’t have the time to wait for a “clean” pair.
 
heart statistically, is the most common to reject, while lungs are the hardest to transplant. Also let’s not even get into finding a suitable organ. There are often many dry runs (aka getting a call but only to find out the organ isn’t a good fit).

You also don’t get a say in what organs you get. Lungs often come from smokers and you can’t say no because you don’t have the time to wait for a “clean” pair.
Lungs could not be successfully transplanted until cyclosporine was launched in the early 1980s. For reasons that I'm pretty sure are still unknown, the old rejection drugs interfered with proper healing of the trachea, which is basically cartilage (and 3D-printed organs have been used on an experimental basis).

This is a Getty Image and therefore copyrighted, so some people may not be able to see it via this link. It's George DeBord, one of the earliest transplantees in 1968, looking at his own diseased heart in a jar. Sadly, he died just weeks later, IIRC from rejection.


Even nowadays, most people who have organ transplants remain chronically ill and disabled, just in a different way.

Oh, and one other thing. There's a 12-year-old British boy named Kori who has a YouTube channel called Kraken the Box, and he wanted to get something like 1,000 subscribers when he started his channel a few months ago. Last time I checked he's up to over 200,000. He was born with HLHS and has had 2 transplants; this heart is failing and he is not a candidate for further surgery. Why not hop over and subscribe yourself, even if you never view anything? He is definitely NOT a potato.

 
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Even nowadays, most people who have organ transplants remain chronically ill and disabled, just in a different way.
There's a girl in the munchie thread who had a liver transplant from her father due to autoimmune liver disease in infancy. She's currently killing the damn thing with unneeded tpn and going off cellcept bc of fake mcas.
 
There's a girl in the munchie thread who had a liver transplant from her father due to autoimmune liver disease in infancy. She's currently killing the damn thing with unneeded tpn and going off cellcept bc of fake mcas.
Got a link, to keep it simple? What is "fake mcas"?
 
Theres a woman on IG who has a severely autistic child and is constantly posting about masking and how others must do it because he can't. Today she posted that he rother kid suddenly can't open his eyes that his eyelids have STOPPED working. She has decided with a doctor that its autoimmune so shes just gonna make him live that way from now on try a medication. She had no other testing done. She said she MIGHT find out if Mayo would look at him. Don't know but if I had a kid that suddenly had to HOLD THEIR EYES OPEN WITH THEIR FINGERS maybe it be important to find out why ASAP.

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I went to IG to see her deal. I'm not seeing an autistic kid? Where was she talking about masking? Her son Christopher has cerebral palsy and is "in there" as evident by posts with his communication device. When I looked further at her blog, turns out he has congenital disorder of glycosylation, or CDG, the same thing Hayden has.
As for sleepy eyes kid, she must have deleted the posts you showed (or were those story?) Her post on 1-24 said that they were seeing a neurologist on Friday (1-27) but she hasn't posted anything about it. So at least she's doing something about it.
 
3D-printed organs have been used on an experimental basis
Yeah but 3D-printed tracheas in particular are not a good example of how useful that technology could potentially be. The whole scandal is horrifying and well worth reading more into if you are interested.

Paolo Macciarini is a transplant-specific Menege/Gallagher/Rumer type, much more interested in pushing the boundaries of the surgery than he is concerned with pt wellbeing. The Karolinska were involves and ended up caugh up in — here is his Wikipedia as a very basic primer.

There are a couple of great documentaries out there too for further info. I've not seen the Apple TV one but it's meant to be p good.

sneak edit: the 3D printing was not necessarily the only issue with these surgeries, the trachea models they used were 'seeded' with the pts own stem cells. I'm not enough of a sciencefag to know, but I think it was the constructions themselves and not the stem cells that were thought to be the issue though.
 
Lungs could not be successfully transplanted until cyclosporine was launched in the early 1980s. For reasons that I'm pretty sure are still unknown, the old rejection drugs interfered with proper healing of the trachea, which is basically cartilage (and 3D-printed organs have been used on an experimental basis).

This is a Getty Image and therefore copyrighted, so some people may not be able to see it via this link. It's George DeBord, one of the earliest transplantees in 1968, looking at his own diseased heart in a jar. Sadly, he died just weeks later, IIRC from rejection.


Even nowadays, most people who have organ transplants remain chronically ill and disabled, just in a different way.

Oh, and one other thing. There's a 12-year-old British boy named Kori who has a YouTube channel called Kraken the Box, and he wanted to get something like 1,000 subscribers when he started his channel a few months ago. Last time I checked he's up to over 200,000. He was born with HLHS and has had 2 transplants; this heart is failing and he is not a candidate for further surgery. Why not hop over and subscribe yourself, even if you never view anything? He is definitely NOT a potato.


Yeah, the side effects of anti rejection meds are cancer and compromised immune system. A simple cold could end in disaster.
 
Yeah, the side effects of anti rejection meds are cancer and compromised immune system. A simple cold could end in disaster.
Not that bad lol. Have experience of looking after transplant patients during COVID times and they just need to be flagged as having the potential to go downhill (and they automatically got all the fancy drugs). Most were totally fine.
 
Not that bad lol. Have experience of looking after transplant patients during COVID times and they just need to be flagged as having the potential to go downhill (and they automatically got all the fancy drugs). Most were totally fine.
It def depends on the organ and disease. Lung tx come with a risk of ptld. Epstein Barr can set it off. Not to mention the high rejection rate. A kidney tx person with a cold, not so bad. A person with a double lung tx with a cold, more dangerous .
 
I went to IG to see her deal. I'm not seeing an autistic kid? Where was she talking about masking? Her son Christopher has cerebral palsy and is "in there" as evident by posts with his communication device. When I looked further at her blog, turns out he has congenital disorder of glycosylation, or CDG, the same thing Hayden has.
As for sleepy eyes kid, she must have deleted the posts you showed (or were those story?) Her post on 1-24 said that they were seeing a neurologist on Friday (1-27) but she hasn't posted anything about it. So at least she's doing something about it.
There are approximately 150 distinct congenital disorders of glycosylation with a wide range of symptoms and severity depending on the affected gene. Most of the CDGs have a neurological component, which can be very severe. His "cerebral palsy" is almost certainly a direct result of the underlying CDG. I don't remember which one he has (or indeed, if she's ever specified which type), but the most common one is called PMM2-CDG.

I gotta go back to work but I'll be back at lunch to talk about CDGs if anyone cares.

I used to think it was a stretch to include Christopher's mother in this thread, but the recent saga involving her other son's eyes has really gotten my thunker thunking. I'm not saying she's dishonest about Christopher's diagnosis; if I were a betting person, I'd put money on that part being true.
 
About Hayvin's and her mother. At the start of the story I felt like she (and husband) were not cows, just really simple people that received terrible news about their daughter which they previously though was a perfect healthy baby. She recorded on her social media how progress was going, but never posting humiliating details or private pictures like some moms do (think of Gwen's disgusting posts) but around after she turned one her sanity seemed to worsen rather than improve.

She is tame compared to Gwen/Robyn/etc but to me she seems like a cow in the making. Suspicious cow behaviour like claiming doctors do not want to treat her child and asking for recommendations, the very unnecessary act of taking her to the beach and even putting her on a bikini for pictures... I think she is worth at least keeping an eye to see if she will go downhill or not.

As for the transplants, it greatly varies from each type of organ. Kidney is the easiest organ to transplant for multiple reasons, and you don't immediately die if you have kidney failure since hemodialysis is an option and a person can live years with it. Plus, people can donate it and don't depend only on deceased donors and one deceased donor = two people get kidneys. And, surgery is very easy and certainly not as invasive as hearts and lungs.

Once I asked a transplant surgeon (and his colleagues/students were with him) which transplant he though was the most difficult/complex. He said right away "Lungs" then added that liver too (yes, I think he said liver) because of the difficulty of reaching the organ during surgery. I don't know if he took part in other organ transplants before, but he was in charge of the kidney transplants. I also asked how often he transplants kidneys and he said "almost everyday".
 
There are approximately 150 distinct congenital disorders of glycosylation with a wide range of symptoms and severity depending on the affected gene. Most of the CDGs have a neurological component, which can be very severe. His "cerebral palsy" is almost certainly a direct result of the underlying CDG. I don't remember which one he has (or indeed, if she's ever specified which type), but the most common one is called PMM2-CDG.

I gotta go back to work but I'll be back at lunch to talk about CDGs if anyone cares.

I used to think it was a stretch to include Christopher's mother in this thread, but the recent saga involving her other son's eyes has really gotten my thunker thunking. I'm not saying she's dishonest about Christopher's diagnosis; if I were a betting person, I'd put money on that part being true.
Absolutely spot on.
About Hayvin's and her mother. At the start of the story I felt like she (and husband) were not cows, just really simple people that received terrible news about their daughter which they previously though was a perfect healthy baby. She recorded on her social media how progress was going, but never posting humiliating details or private pictures like some moms do (think of Gwen's disgusting posts) but around after she turned one her sanity seemed to worsen rather than improve.

She is tame compared to Gwen/Robyn/etc but to me she seems like a cow in the making. Suspicious cow behaviour like claiming doctors do not want to treat her child and asking for recommendations, the very unnecessary act of taking her to the beach and even putting her on a bikini for pictures... I think she is worth at least keeping an eye to see if she will go downhill or not.

As for the transplants, it greatly varies from each type of organ. Kidney is the easiest organ to transplant for multiple reasons, and you don't immediately die if you have kidney failure since hemodialysis is an option and a person can live years with it. Plus, people can donate it and don't depend only on deceased donors and one deceased donor = two people get kidneys. And, surgery is very easy and certainly not as invasive as hearts and lungs.

Once I asked a transplant surgeon (and his colleagues/students were with him) which transplant he though was the most difficult/complex. He said right away "Lungs" then added that liver too (yes, I think he said liver) because of the difficulty of reaching the organ during surgery. I don't know if he took part in other organ transplants before, but he was in charge of the kidney transplants. I also asked how often he transplants kidneys and he said "almost everyday".

100 percent correct. Also, a lot of lungs harvested are from smokers. You don't get a choice. If you omit smokers, you'll die. Then there's the side effects of the meds that make the patients feel like they are going crazy, the fact you cannot have sushi and other foods ever again, the psychological aspect of knowing someone died for you to get that organ, the risk of ptld and other cancers, infection and rejection and the poor stays long term...yeah. It's a lot.
 
Once I asked a transplant surgeon (and his colleagues/students were with him) which transplant he though was the most difficult/complex. He said right away "Lungs" then added that liver too (yes, I think he said liver) because of the difficulty of reaching the organ during surgery. I don't know if he took part in other organ transplants before, but he was in charge of the kidney transplants. I also asked how often he transplants kidneys and he said "almost everyday".

Livers are very vascular, too, which means they bleed readily and voluminously. If you've ever seen or handled a human liver, you'll know that they're very bloody. It can make them difficult to deal with in a laboratory setting: they're slippery, they don't always section well for the preparation of slides, and residual blood present in the tissue can interfere with testing. A sick liver can also be very friable, which means it tends to fall apart readily when touched or handled, even if you're being very careful.

To complicate matters even further, patients with severe liver disease often have fucked up coagulation and are at substantially increased risk of both thrombosis (blood clots) and hemorrhage. It's pretty common for liver transplant recipients to require a shitload of blood products, including packed red blood cells, fresh frozen plasma, cryoprecipitate (a blood product derived from plasma that contains concentrated clotting factors), and platelets during the procedure and for 24-48 hours afterwards. Too much bleeding is obviously bad for the patient, but it can also make surgery more difficult by making hands and instruments slippery and obscuring visualization of the operative site. Then, once you start replacing the lost blood volume, you have to start worrying about fluid balance and hemodynamics and shit lest you fuck up some other useful organ and don't have a spare on hand.

With the tendency for bleeding and all the vessels that need to be anastomosed, some of which are extremely tiny, I'd imagine that the liver is a pretty tricky organ to swap out, especially if it's a living donor transplant.

I did a cursory Google search and it seems like most transplant surgeons agree with the guy you asked - it's lungs and livers all the way down. I'd bet the pancreas is a bitch to transplant, too, but that's a less common one. In general, your pancreas very strongly prefers not to be messed with.

Tl,dr: There is a reason your local transplant surgeon has a swimming pool AND a racquetball court in the 10,000 square foot house that he's never at.

Edited to say that this post had interesting links but the site hiccuped while I was trying to submit the post and I lost it.
 
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Livers are very vascular, too, which means they bleed readily and voluminously. If you've ever seen or handled a human liver, you'll know that they're very bloody. It can make them difficult to deal with in a laboratory setting: they're slippery, they don't always section well for the preparation of slides, and residual blood present in the tissue can interfere with testing. A sick liver can also be very friable, which means it tends to fall apart readily when touched or handled, even if you're being very careful.

To complicate matters even further, patients with severe liver disease often have fucked up coagulation and are at substantially increased risk of both thrombosis (blood clots) and hemorrhage. It's pretty common for liver transplant recipients to require a shitload of blood products, including packed red blood cells, fresh frozen plasma, cryoprecipitate (a blood product derived from plasma that contains concentrated clotting factors), and platelets during the procedure and for 24-48 hours afterwards. Too much bleeding is obviously bad for the patient, but it can also make surgery more difficult by making hands and instruments slippery and obscuring visualization of the operative site. Then, once you start replacing the lost blood volume, you have to start worrying about fluid balance and hemodynamics and shit lest you fuck up some other useful organ and don't have a spare on hand.

With the tendency for bleeding and all the vessels that need to be anastomosed, some of which are extremely tiny, I'd imagine that the liver is a pretty tricky organ to swap out, especially if it's a living donor transplant.

I did a cursory Google search and it seems like most transplant surgeons agree with the guy you asked - it's lungs and livers all the way down. I'd bet the pancreas is a bitch to transplant, too, but that's a less common one. In general, your pancreas very strongly prefers not to be messed with.

Tl,dr: There is a reason your local transplant surgeon has a swimming pool AND a racquetball court in the 10,000 square foot house that he's never at.

Edited to say that this post had interesting links but the site hiccuped while I was trying to submit the post and I lost it.

You know what's really nice? When lungs are so diseased they are stuck to the lung cavity and have to be cut out in pieces, or brimming with infection that there's white spots everywhere and it looks absolutely horrid.

Yes, the liver is responsible for blood clotting factors. Portal and mesenteric veins are the big ones with liver disease, but esophogeal varices are more likely to bleed in cirrhotic patients.

Don't abuse your liver, folks. (I'm aware of congenital liver diseases, I'm just saying...don't be a boglim and drink your way to cirrhosis)
 
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