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

[Sparkling Yuzu]

Meh, I don't know what their bodies could have told us that isn't already known. They had a full physical workup, including MRIs and were actually featured in a journal article. The useful data were generated when they were alive. There's also an Asns mouse model.

People really get into the idea of "body donation", both for Tard Babies and deathfats, but sometimes there's just not much that's useful to learn after death.

Do you think it would be useful for Luna Buna? I wanna see just how swissed her cheese is at the end.

 

[everybody in Portugal]

Do you think it would be useful for Luna Buna? I wanna see just how swissed her cheese is at the end.

Useful? In a limited sense yeah maybe, a bit. Interesting and horrifying? Yes, definitely those.

 

[Thomas Eugene Paris]

Do you think it would be useful for Luna Buna? I wanna see just how swissed her cheese is at the end.

No, I don't think so. Her brain anatomy (or lack thereof) would be visible on MRI. An autopsy could be worthwhile to elucidate a specific cause of death, but speaking about the greater good, there won't be much that Luna's body can tell us.

As @Garbage.Theory mentioned above, it's very helpful to donate your body to an anatomy program, because it can provide hands on training for students. With anatomy as abnormal as Luna's, there's not much useful information to be gleaned. Her brain is so destroyed that it won't tell observers anything about normal neuroanatomy. That's really the primary value of a cadaver lab. Doctors are unlikely to ever encounter a patient with a condition as severe as Luna's, so there's not really a point to dissecting her. Speaking from my experience, the deeded body programs actually have fairly strict requirements for the candidates they will accept, including no obese people. They want the bodies they get to be as close to "textbook" as possible so that new doctors can learn what things are supposed to look like. Cadaver lab isn't really about finding the most fucked up specimens you can, it's about taking an image from a textbook and letting a student interact with it in three dimensions.

Anything that Luna might be able to tell us about how the brain works would have to happen when she was alive, and even then, speaking as a brain person, I don't know if it would be very useful.

I think @eternal dog mongler might be able to provide professional insight.

Edited to add that I know this fucking sucks. I, too, want Luna's suffering to at least have a purpose this way, but I don't think it's the case. I have some images I can post on her thread in a bit, too.

Edit: I do feel it would be remiss not to clarify that for stuff like rare tumors, it's absolutely critical for patients to be willing to donate their tissue to research. If you would like to contribute to a worthwhile cause, or if you'd just like a real example of how tissue donation can help advance our understanding, check out Gift from a Child, which helps coordinate the donation of brain and spinal cord tissue from children who die of rare and aggressive forms of cancer. There's also the Allen Brain Atlas, which is an initiative of the Allen Brain Institute. The Institute was founded by Paul Allen (yes, basketball fans, that Paul Allen) to advance our knowledge of the human brain and the bad things that can happen to it. The resources on their site are absolutely incredible and I use them in some way almost daily, so thanks, Mr. Allen (even though the Blazers are garbage now).

 

[keyboredsm4shthe2nd]

Ok, that’s been thoroughly established, but what does that have to do with Gwen’s preferences for their burial?

I just find it humourous op seems to take Gwen for some grieving warrior mom type instead of a shrieking narcissistic harpy. If dissecting the taters had any benefit to learning about their condition, she'd forbid it not because she couldn't stand the thought of her kid being chopped, but because it would be a narcissistic injury for her.

 

[Wine em Dine em 69 em]

I just find it humourous op seems to take Gwen for some grieving warrior mom type instead of a shrieking narcissistic harpy. If dissecting the taters had any benefit to learning about their condition, she'd forbid it not because she couldn't stand the thought of her kid being chopped, but because it would be a narcissistic injury for her.

Well Gwen did allow the taters to be included in one of the first studies of asperigase deficiency syndrome or whatever they had, while they were alive, so she knew what the deal was with her spuds. There was nothing to be gained from studying their corpses.
I don’t think anyone should pity Gwen, but she did live with these girls for 17+ years, they were her daughters, and I do believe she loved them in her way, and misses them. (Looking back at pictures of Lola & Claire, I can sometimes find some humor in how the girls were portrayed, albeit very tasteless humor).
Now compare her to someone like Robyn, yeah, Gwen looks like Mary Poppins.

 

[Thomas Eugene Paris]

Well Gwen did allow the taters to be included in one of the first studies of asperigase deficiency syndrome or whatever they had, while they were alive, so she knew what the deal was with her spuds. There was nothing to be gained from studying their corpses.
I don’t think anyone should pity Gwen, but she did live with these girls for 17+ years, they were her daughters, and I do believe she loved them in her way, and misses them. (Looking back at pictures of Lola & Claire, I can sometimes find some humor in how the girls were portrayed, albeit very tasteless humor).
Now compare her to someone like Robyn, yeah, Gwen looks like Mary Poppins.

Related: can anyone find the paper the girls are in? I've been poking around Pubmed for it to no avail.

 

[Carnavoyeur]

Related: can anyone find the paper the girls are in? I've been poking around Pubmed for it to no avail.

Expanding the Phenotype of Asparagine Synthetase Deficiency | ACMG Annual Clinical Genetics Meeting 2017

epostersonline.com

 

[Thomas Eugene Paris]

Expanding the Phenotype of Asparagine Synthetase Deficiency | ACMG Annual Clinical Genetics Meeting 2017

epostersonline.com

Ah, it was a poster. That explains why I had trouble finding it.

Thank you very much.

 

[Android raptor]

Yeah Gwen is basically to the more infamous spudmoms what Sarge is to the Sammieverse thread, compared to Robyn or Hollie she's tame but she's still not exactly a good person. The Claire post wasn't bad until she started going off about the evil doctor.

 

[MysticMisty]

(If you still want to donate your body “to science” it could be put to good use in medical schools. One place where human dissection is still very useful is in teaching new doctors)

There's also forensic studies, where they put bodies through various situations and keep track of all aspects of decomposition. This helps medical examiners accurately determine when an individual's death occurred, regardless of it being an accidental death on a hike, or a murderer dumping a body there. They even take into account conditions that would effect the natural progression of decomposition, like if they were wrapped in a rug and buried several feet below the ground. Pretty cool stuff.

Truth be told, I was sympathetic (and dare I say, even moved) by the start of Gwen's post about Claire. Then she started pissing and moaning about "that dickhead doctor" and how Claire defied all of "shitty, innaccurate predictions" by being "healthy and thriving", and all my sympathy went out the window. Beneath the trauma and grief, she's still the same self-absorbed, lying Gwen.

And the doctor in question isn't some last in his class loser, he's a renowned expert in his field who was realistic and erring on the side of caution for Claire's prognosis (which is standard). Who also suspected a previously unknown genetic disorder behind Claire's diagnosis (which was 100% correct) and offered to screen her eggs/future embryos so that if they decided to have a third child (or even more) they could be healthy, unaffected kids. Gwen decided he exceeded the hurtful truth level and ignored everything he said. And we all know how that turned out.

 

[just lurking]

There's also forensic studies, where they put bodies through various situations and keep track of all aspects of decomposition. This helps medical examiners accurately determine when an individual's death occurred, regardless of it being an accidental death on a hike, or a murderer dumping a body there. They even take into account conditions that would effect the natural progression of decomposition, like if they were wrapped in a rug and buried several feet below the ground. Pretty cool stuff.

Body farms! There's only a handful of them around north america but they're incredibly cool and I'd love to visit one someday

 

[Flourishing Pinecone ❧]

Both my parents signed up for body farms, which is good for me it means I'll save money on funerals.

 

[Chandelier]

It's pretty interesting how much this mindset has changed in recent years. When I've done some genealogy for my family I noticed that there would often be two children with the same name in one family. That's because one of those kids had always died young, and then they used that same name for the next child of the same sex. Had you done that today you would probably be considered cold or even heartless, but to be honest I think - even in all its practicality - it's kind of sweet. Like your kid is back, they just needed another body. It doesn't mean our ancestors didn't grieve a lost child, I'm very sure they did, but they knew they had to move on after that and focus on the children that lived.

There was a post on Our World in Data on how birthrates in the past went from high to low, assuming each woman had 8 kids. Of course, that assumes all women survived to give birth. We know they didn't. Even in the Middle Ages, most women had, on average, 3-5 kids, and that seems to be the Darwinian sweetspot. Certain women, like Empress Maria Theresa of Austria, was famous not only for being fertile well into her forties, but for all of her kids making it to adulthood. She was fecund and her family was celebrated for it. Also back then there were aunts and uncles and extended family members to help take care of the kids, whereas today it's a solo affair.

It is interesting to think that today, the kids we WOULD have that would perish are merely flushed out via spontaneous abortions. I have no proof of this, it's just an interesting trend.

Family names held importance then; it was genetic lineage. If you survived with the name it meant you carried on that legacy.

And someone mentioned the Victorian era: there were pros and cons to it. We got Louis Pasteur and the first sterilized syringes, and mass production of them, but mass urbanization led to huge outbreaks. It was inevitable so many children died from the sheer amounts of pollution and dangerous chemicals women were exposed to, like mercury.

Working on a certifcate at the moment for forensic child psychology and in it they discuss mortality rates of children and they state that until the 1900s the median age was only 16 now its in the 40s. So even if you survived childhood you were not going far beyond it.

Double post but this is likely due to urbanization and the outbreak of communicable diseases. In the Middle Ages, and even in Ancient times, once you got past the age of 15 you were likely set for 'genetic continuation' if you will. Of course all other manner of things will kill you, but there were quite a few people who made it into their 60s. The ones who did, we are descended from. Genetic robustness has a way.

Certain climates can lower life expectancy. Life expectancy was lowered during the Irish Famine, and during the period after the first glaciation. In that point, there really is no benefit to breeding as the resources needed will just be wasted if you are going to die anyways.

TB, diphtheria, polio, smallpox, all these and more just exploded in the 1800s. Sure, they had inoculation but until that point people tended to live next to farms and be exposed to zoonotic diseases that gave them some protection (eg. milkmaids with cowpox and mounted riders with horsepox).

Median ages also fluctuate based on who is dying and who isn't. When times are bad, the vulnerable go first.

 

[A tree]

I just find it humourous op seems to take Gwen for some grieving warrior mom type instead of a shrieking narcissistic harpy. If dissecting the taters had any benefit to learning about their condition, she'd forbid it not because she couldn't stand the thought of her kid being chopped, but because it would be a narcissistic injury for her.

OK but consider this: Gwen is a lolcow for a reason blah blah weve all read the thread. She's still a human and a parent who's had to bury her kids. I know we're all weapons grade autistic but we're capable of understanding that shades of grey exist right?
She was an exploitative social media tatermom BUT I don't see that that gives anyone the right to dictate how she buries her daughters let alone demand she give their bodies up for dissection.

You can't know the visceral body horror of having to consider the reality of an autopsy being done on your baby. You can't know the thoughts that run through a parents head about whether to burn the body or let the worms have at it. We can pretty these things up with euphemistic words but even Gwen, for everything she's done is still human.

She can be a terrible person and still deserve to feel in control of what happens in terms of the final resting place of Lola and Claire. Giving the child a dignified funeral is the last thing the parent can do for them and I may not respect all Gwens choices but I do respect her decisions postmortem. It's not just for her its for the rest of the family too.
Nuance. It's a wonderful thing.

Also please don't tell me what I think that's extremely annoying.

 

[Allo Vera]

You could also say that about any parent who loses a kid.
Something that I noticed about baby and child loss spaces online was that they encouraged a competitive pressure never to get over it, never move past it.

That’s an interesting point and I think perpetual one-upmanship is a universal trait in all mommy communities online, no matter what the topic.

I stumbled across a Tiktok account a while ago from a woman who’d lost her little girl and put a Wendy house on top of the grave, fully kitted out with lights, soft furnishings and books so she could spend all hours of the day and night there. The account seems to be 50% flexing about what a dutiful loss mama she is, and 50% arguing with people who say what she’s doing isn’t the healthiest outlet for her grief.

 

[A tree]

OK but consider this: Gwen is a lolcow for a reason blah blah weve all read the thread. She's still a human and a parent who's had to bury her kids. I know we're all weapons grade autistic but we're capable of understanding that shades of grey exist right?
She was an exploitative social media tatermom BUT I don't see that that gives anyone the right to dictate how she buries her daughters let alone demand she give their bodies up for dissection.

You can't know the visceral body horror of having to consider the reality of an autopsy being done on your baby. You can't know the thoughts that run through a parents head about whether to burn the body or let the worms have at it. We can pretty these things up with euphemistic words but even Gwen, for everything she's done is still human.

She can be a terrible person and still deserve to feel in control of what happens in terms of the final resting place of Lola and Claire. Giving the child a dignified funeral is the last thing the parent can do for them and I may not respect all Gwens choices but I do respect her decisions postmortem. It's not just for her its for the rest of the family too.
Nuance. It's a wonderful thing.

Also please don't tell me what I think that's extremely annoying.

That’s an interesting point and I think perpetual one-upmanship is a universal trait in all mommy communities online, no matter what the topic.

I stumbled across a Tiktok account a while ago from a woman who’d lost her little girl and put a Wendy house on top of the grave, fully kitted out with lights, soft furnishings and books so she could spend all hours of the day and night there. The account seems to be 50% flexing about what a dutiful loss mama she is, and 50% arguing with people who say what she’s doing isn’t the healthiest outlet for her grief.

Theres a lot of it about. Tbh it made me log off the Internet and say fuck it I'm going for a long walk instead. I recommend long walks over extended rending of garments. Makes you think about how we've got rid of the traditionally proscribed mourning customs and its anything goes now.
Those victorian mothers knew exactly what was expected of them and for how long and then life goes on and youll get pregnant again straight away. I'm told doctors for as long as they've existed have taken the husband aside and said "go home and get her pregnant again ASAP".

 

[Thomas Eugene Paris]

There's also forensic studies, where they put bodies through various situations and keep track of all aspects of decomposition. This helps medical examiners accurately determine when an individual's death occurred, regardless of it being an accidental death on a hike, or a murderer dumping a body there. They even take into account conditions that would effect the natural progression of decomposition, like if they were wrapped in a rug and buried several feet below the ground. Pretty cool stuff.


And the doctor in question isn't some last in his class loser, he's a renowned expert in his field who was realistic and erring on the side of caution for Claire's prognosis (which is standard). Who also suspected a previously unknown genetic disorder behind Claire's diagnosis (which was 100% correct) and offered to screen her eggs/future embryos so that if they decided to have a third child (or even more) they could be healthy, unaffected kids. Gwen decided he exceeded the hurtful truth level and ignored everything he said. And we all know how that turned out.

Regarding your latter point, that's the main impediment for my feeling any sympathy for Gwen. She was (and still is, apparently) a complete asshole to a guy who a) didn't have to make time to see Claire at all and b) wasn't wrong about anything he said. I won't go off about him again, but Dr. William Dobyns isn't just the neighborhood pediatrician. He literally wrote the book about categorizing brain malformations, and Gwen acts like he is just some moron who pulled a diagnosis out of his ass to make her mad because he didn't understand Claire's infinite potential or whatever. It's extremely upsetting that she used his diagnosis to withhold even minimal medical care from both Claire and Lola, and I cannot imagine what it does to him to think about those poor girls not even being medicated for seizures.

I don't doubt that he probably came across as arrogant and a bit of a jerk when he diagnosed Claire; he's a world-renowned neurologist, and they're pretty much all assholes. They don't like when some uneducated nobody like Gwen tells them they're wrong for no reason, and I'm sure her bent for woo was apparent even before she went off the deep end. However, his bedside manner of lack thereof is between him and his department chair, and if Gwen actually had a problem with the way the diagnosis was delivered, she needed to go to patient relations (that department is MADE for the Gwens of the world) or the hospital ombudsman and tell them so. Instead, she chose to pitch an unholy shitfit and punish the only two utterly innocent people in this scenario: Claire and Lola. It is unconscionable that she heard "take her home and make her comfortable" and decided that meant Claire and Lola were not entitled to ANY medication to help alleviate their suffering. I cannot emphasize how... irregular it is for children with diagnosed epilepsy to not receive any anticonvulsant medication in the developed world.

Spoiler

Claire and Lola's brains were completely fucked from the beginning, but every seizure a person has causes microscopic changes in the appearance of the brain tissue and increases the risk of having another. Seizures can cause physical injuries, like severe bite wounds on the tongue or inside the mouth, injury from falling or banging the head, and broken bones, which would be an especially relevant concern in children like Claire and Lola, who undoubtedly had shitty bone density. Poorly controlled seizures can quickly spiral from a single event into a long, continuous seizure, or status epilepticus, which can and does kill people even with medical attention. Uncontrolled epilepsy also dramatically increases the risk of SUDEP, or Sudden Unexpected Death in Epilepsy Patients, which is pretty much the greatest fear of every caregiver of someone with epilepsy. All of that aside, anyone with epilepsy can tell you recovering from seizures fucking sucks even if your brain isn't totally gorked. You feel sleepy and confused, may have a bad headache or nausea, and just generally feel not like yourself. If you only have one or two seizures a year, maybe it doesn't hugely detract from your quality of life. Kids like Claire and Lola, though, have hundreds to thousands of small seizures every day. Without effective medication, they're constantly either seizing or postictal, and if they were capable of feeling anything, they probably felt like shit 24/7. I also really don't understand how a parent would be able to stand watching her kids have uncontrolled seizures without at least trying available anticonvulsants. I know Gwen claims that Claire and Lola were "too sensitive" for any medication other than acetaminophen/paracetamol, but that absolutely reeks of cope and I never believed it. That was the same justification she gave for why Lola didn't have a feeding tube, which is another decision I found pretty heinous.

It is immensely sad that Gwen lost her girls, but it is immensely cruel how she allowed them to suffer to serve her own ego. Claire and Lola didn't ask for any of this. I really can't comprehend seeking out and paying for an expert opinion only to ignore absolutely everything the man says and using a two hour encounter to fuel almost two decades of contemptuous, childish bullshit. I would love to know what actually happened during that office visit and what Dr. Dobyns thinks of it and its aftermath.

 

[PotatoSalad4711]

Stomach cancer used to be a common cause of death in the U.S., although probably not the same type,

I’m not so sure all of that was technically even cancer. Before the days of refrigeration, you were taking a gamble by buying meat at the local market, especially in cities where you couldn’t own livestock. It’s why Heinz invented ketchup. The meat tasted so bad it had to be drowned in sauce just to make it palatable. Lots of “stomach issues” were going around. Scary times.

 

[Android raptor]

I know Gwen was at least using THC oil on them towards the end, if the baked potatoes law saga was any indication. Better than nothing, but still not an excuse denying them seizure meds most of their lives.

 

[Yeast Beast]

At this point I just want to follow @Thomas Eugene Paris around the farms and learn medicine. Between the Hartley post here and the MRIs on Lunas thread, I think my brain grew three sizes today.