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

[Android raptor]

Is it possible for the kid to have any quality of life? Or is he always in pain

 

[Cringey Edgelord]

Spoiler: predestination

If anything we're laughing at god IMO, I don't see misbegotten vessels like this as worthy of not mocking but I appreciate it isn't a nice thing, certainly immoral but like most I'm a self-admitted bad person and don't see anything wrong with it. just look away lol, the thread we're in is literally called tard baby afterall.

Not having any standards can still be a standard in and of itself.

Making fun of a disabled kid doesn't make you a "bad person" - it makes you more of a retarded child than the kid in question.

 

[Banditotron]

It is always OK to laugh at retarded babies

 

[Teghern]

Making fun of a disabled kid doesn't make you a "bad person" - it makes you more of a retarded child than the kid in question.

Nah I'd exclude column B there, in my experience most children have quite a lot of empathy and while they'll say some horrible things they never really mean it.

 

[Femanon]

Nah I'd exclude column B there, in my experience most children have quite a lot of empathy and while they'll say some horrible things they never really mean it.

Only certain kinds and levels of empathy. I'm sure you if you gave kids a button that would "kill bullies" they'd press it.

 

[Thomas Eugene Paris]

Is it possible for the kid to have any quality of life? Or is he always in pain

His mom is active on social media and frequently posts photos and videos in which he seems fairly happy and comfortable, but I'm not sure that he's aware enough for it to be a response to anything, if that makes sense. The effects of the genetic mutation are such that he probably does experience pain fairly frequently, but he also is likely not able to connect one unpleasant experience to the previous ones or anticipate another with dread. It's really hard to say and I'm totally speculating based on how he appears in videos. Peroxisome dysfunction is really bad news for every cell type, which explains why the prognosis for peroxisome biogenesis disorders is so poor.

Jude's mom obviously loves him dearly and is willing to move heaven and earth to meet his extremely complex needs; Dad also appears to cherish him. Neither parent seems particularly delusional about his diagnosis or what it entails; they seem pretty good about meeting him where he's at. They were super young when he was born and I cannot imagine how devastating and scary his diagnosis must have been. These disorders are quite rare, not like they could go to a support group for parents of kids with dwarfism or something and find the experiences shared by others relatable.

It is always OK to laugh at retarded babies

It's not a matter of it being either "OK" or "immoral". Contrary to popular belief, not everything in the world is black or white.

 

[Android raptor]

It sounds like the disorder is vaguely comparable to what the Hartleys had i.e. rare, genetic, causes dwarfism and severe mental retardation and all kids of other eventually fatal issues.

I assume it can't be detected in utero, right?

 

[Banditotron]

It's not a matter of it being either "OK" or "immoral". Contrary to popular belief, not everything in the world is black or white.

I don't follow this thread at all I just saw someone saying the thread was getting sad and I felt a reminder was in order

 

[booklover]

It sounds like the disorder is vaguely comparable to what the Hartleys had i.e. rare, genetic, causes dwarfism and severe mental retardation and all kids of other eventually fatal issues.

I assume it can't be detected in utero, right?

Chances are, it's something that is so rare, they have to be looking specifically for it.

 

[Thomas Eugene Paris]

It sounds like the disorder is vaguely comparable to what the Hartleys had i.e. rare, genetic, causes dwarfism and severe mental retardation and all kids of other eventually fatal issues.

I assume it can't be detected in utero, right?

That's a decent comparison.

I think antenatal diagnosis of rhizomelic chondrodysplasia punctata is pretty feasible. The rhizomelia and joint contractures caused by the disorder are so severe that they probably couldn't be missed on an ultrasound. The stippled calcification of cartilage would also be noticeable and would narrow the list of potential diagnoses; that combination of signs is pretty characteristic. From there, it's just a matter of testing to determine what gene is mutated, whether that testing is performed before or after birth. Like many extremely rare genetic disorders, however, most patients who are diagnosed before birth are identified because a sibling had (and possibly died from) the same illness. That is changing as technology improves, though.

Here's a paper discussing antenatal diagnosis of RCDP in patients without a notable family history of the disorder. It seems like most of the characteristic features are visible on ultrasound and the clinician simply has to know the significance of what he or she is looking at.

 

[LonesomeDud]

I'm pretty sure that Eva Sherbondy is totally gorked. She appears awake and alert, but not really aware. She might have more consciousness than Luna, for example, but her brain injury was very severe. I don't think she's "locked in", and I would be surprised if she were still cognitively present enough to use an augmentative communication device. She will never get better than she is right now.

Her parents, particularly her father, really rub me the wrong way and their decision to trach and vent her has done nothing to improve my opinion of them. I'm sure they are still claiming that she has an excellent quality of life but even a brief perusal of her dad's social media bullshit makes it pretty clear that she's not exactly thriving and happy.

I think the healthiest reactions I've seen to children with TBIs by their parents are the parents who choose to meet their kids at the level they're able to rise to. Eva Sherbondy's dad is a dick. You know he's the kind of dad who says rude things that are insensitive to her dignity to other people. She's roughly like a very young baby, and the focus needs to be on what would make a one month baby comfortable - Is she clean? Is she getting enough feed to keep growing? Is she being loved on enough? The dad just treats her like a kid that chose this life, rather than someone with an injury that isn't her fault.

He's just fucked up, and no one will just say it to his face.

 

[Thomas Eugene Paris]

I think the healthiest reactions I've seen to children with TBIs by their parents are the parents who choose to meet their kids at the level they're able to rise to. Eva Sherbondy's dad is a dick. You know he's the kind of dad who says rude things that are insensitive to her dignity to other people. She's roughly like a very young baby, and the focus needs to be on what would make a one month baby comfortable - Is she clean? Is she getting enough feed to keep growing? Is she being loved on enough? The dad just treats her like a kid that chose this life, rather than someone with an injury that isn't her fault.

He's just fucked up, and no one will just say it to his face.

Absolutely. He treats her like a nuisance, like she disgusts and annoys him.

It's like, you're the one who wanted modern medicine to pull out all the stops to save her life, and you were undoubtedly informed over and over again what that "life" would look like. You knew the most likely outcome and chose heroic measures anyway; you don't get to be disgusted by the reality of it. You have zero moral high ground here, Dugan.

He's also the kind of selfish "Christian" who feels entitled to a miracle. It's as though he expects that God is up there just champing at the bit to send wonderous occurence or three his way because he's so special and great. I'm sure he has some theological justification for his attitude, but I don't care what it is. Is there a term for this phenomenon among a certain flavor of religious people?

 

[The former Jack Donaghy]

I think the healthiest reactions I've seen to children with TBIs by their parents are the parents who choose to meet their kids at the level they're able to rise to. Eva Sherbondy's dad is a dick. You know he's the kind of dad who says rude things that are insensitive to her dignity to other people. She's roughly like a very young baby, and the focus needs to be on what would make a one month baby comfortable - Is she clean? Is she getting enough feed to keep growing? Is she being loved on enough? The dad just treats her like a kid that chose this life, rather than someone with an injury that isn't her fault.

He's just fucked up, and no one will just say it to his face.

Eva's dad is a total asshole. I'll never forget that photo they took with her when they all mocked her facial expression.

 

[Second Missing Primarch]

Is there a term for this phenomenon among a certain flavor of religious people?

There probably is, but I think "main character syndrome" works just fine in Dugan Sherbondy's case. This is a man who is the center of his own universe, for all that he's convinced himself otherwise, and I think he's probably still big mad at God for not miraculously fixing Eva even though he prayed a lot and splashed the poor girl all over social media for attention and tried to use her as a tool for evangelism by claiming that her accident was all part of God's plan.

Remember also that Dugan makes his kids call him "Abba". This is the modern Hebrew for "father", but in the context of Christianity it is a very special and intimate form of address for God as the Father, one that carries connotations of unquestioning obedience and submission to His will and should not be used lightly. The fact that Dugan has seen fit to appropriate the title for himself is a pretty clear indicator of exactly how highly he thinks of himself in relation to God. I won't go so far as to say he's a narcissist, but he definitely sees himself as the main character of this story and he doesn't like it when he's reminded otherwise.

 

[TismFarmer]

Eva's dad is a total asshole. I'll never forget that photo they took with her when they all mocked her facial expression.

I Also get the STRONG impression that he's the kind of creepy Dad who is overly proud of his daughters beauty and grace and was looking forward to when she would be a gorgeous teenager. Looks and outward appearance are very important to him.
Now 'his' beautiful daughter is damaged goods. If she was born this way he would have let her die. Now he has to keep her and care for her in order to be a good person. I KNOW he says abusive things to her and calls her broken and a retard. He's probably physically abusive too.

 

[LonesomeDud]

Absolutely. He treats her like a nuisance, like she disgusts and annoys him.

It's like, you're the one who wanted modern medicine to pull out all the stops to save her life, and you were undoubtedly informed over and over again what that "life" would look like. You knew the most likely outcome and chose heroic measures anyway; you don't get to be disgusted by the reality of it. You have zero moral high ground here, Dugan.

He's also the kind of selfish "Christian" who feels entitled to a miracle. It's as though he expects that God is up there just champing at the bit to send wonderous occurence or three his way because he's so special and great. I'm sure he has some theological justification for his attitude, but I don't care what it is. Is there a term for this phenomenon among a certain flavor of religious people?

The time to say goodbye and still have her awake and alert, able to feel your comfort and love, and look you in the eye, is a miracle in and of itself. I think they went too far and I can understand just hoping against the truth for some kind of divine intervention, because you just love her too much to accept the truth. I hope if it ever happens to my family, I'll have the hand of God on me to let me not make the same mistakes.

He's just a really sinful, prideful person, and he doesn't have the moral decency to humble himself before God and be a better father. I would argue he has fundamentally damaged or poor faith, and he's just been exposed. If he had the eyes to see it, he has failed at the most important task set in front of him. A good pastor will act like a therapist. I get the impression these people need a major overhaul in life.

Eva's dad is a total asshole. I'll never forget that photo they took with her when they all mocked her facial expression.

I have to wonder if, as a dad who probably still would have held his kid at the age she was hurt, if he ever learned how to hold her in a way that felt good for her. They seem to not know how to interact with someone with a brain injury like hers, and the nurses, PT, and OT will straight up teach you as you go. They're professionals who are there to help you will all that, but you have to have to have the wisdom to shut up and listen to the professionals who have the heart when you're lost. And you have to have the humility to admit you're lost.

There's not a script when you become a dad and there are a million little failures along the way, but I think he actually thinks he's a good dad.

 

[FarmVille]

I think Eva is far closer to being in a vegetative state than having a TBI.

There are a lot of misconceptions about bodies in vegetative states—they can sit up, move their arms, legs, mouths, make what appears to be eye contact and otherwise look healthy.

Doctors are shit at explaining to families that this doesn’t mean they have any cognitive function and have no hope of regaining function. Long term care facilities then end up filled with adult Evas and delusional families.

 

[booklover]

I think the healthiest reactions I've seen to children with TBIs by their parents are the parents who choose to meet their kids at the level they're able to rise to. Eva Sherbondy's dad is a dick. You know he's the kind of dad who says rude things that are insensitive to her dignity to other people. She's roughly like a very young baby, and the focus needs to be on what would make a one month baby comfortable - Is she clean? Is she getting enough feed to keep growing? Is she being loved on enough? The dad just treats her like a kid that chose this life, rather than someone with an injury that isn't her fault.

He's just fucked up, and no one will just say it to his face.

Whaddya bet these pictures are the only time he ever shows any interest in her?

Anyway, I recently saw an obituary for a woman from my area who had died in a nursing home at the age of 70. Her picture was not that of a "normal" person, so I looked up the full obit on the funeral home's website. In short, her parents knew from birth that something was wrong with her (she didn't have Down syndrome, that I know) but they promised each other that they would keep her at home as long as possible. They traveled with her on Amtrak and airplanes, took her to restaurants and concerts, and even though she had a mental age that peaked at 5 months, signed her up to "work" at a sheltered workshop even though she was not capable of working, for the socialization which the obit said she did appreciate. After her father died, she was placed in this nursing home, where her older siblings and mother visited her regularly until they died themselves.

There's a woman in my area who was also left brain-damaged in her teens after a medical error (and the doctor lost his license and went to prison for a while, because it wasn't the first time he'd done anything like this.). In the months that followed, her parents took her home and tube-fed her and changed her diapers, and one thing that really got to me was that they knew that she could remember what she was like before she had this botched operation. I found out recently that she's still alive, in her 40s, and while she still needs to use a wheelchair and cannot drive, eventually regained the ability to care for herself on some level, and has her own apartment with supervision.

 

[Thomas Eugene Paris]

I think Eva is far closer to being in a vegetative state than having a TBI.

Yeah, you are almost certainly correct. I don't think she's really "in there" any more.

Whaddya bet these pictures are the only time he ever shows any interest in her?

As long as they're the only pictures he's taking of her, if you know what I mean.

(It's very common for girls and women with severe disabilities to become victims of sexual abuse.)

 

[booklover]

Yeah, you are almost certainly correct. I don't think she's really "in there" any more.


As long as they're the only pictures he's taking of her, if you know what I mean.

(It's very common for girls and women with severe disabilities to become victims of sexual abuse.)

Males too.

There's a Netflix doco right now about a British woman who took advantage of one of her clients, a severely disabled man she claimed she could speak with via the long-debunked facilitated communication. I haven't seen it, and TBH don't want to. He was nonverbal and unable to consent to any kind of voluntary sexual activity.