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

[Android raptor]

Yeah I think Havyn's parents are kinda sus, but nothing to suggest they're anywhere near Globyn or Gwen level (yet).

The write-ups were at least interesting though, especially learning about yet another rare (and devastating) genetic disorder. Poor kid

 

[JanuaryViolet]

>>the decisions made regarding Havyn's care haven't been for her benefit or comfort whatsoever.

Good lord, yes, this. Please let this poor child go.

 

[Agent Abe Caprine]

The ironic thing about naming it sonic hedgehog is whatever autist named it that probably had some SHH action going on himself. Yes I'm saying himself because it was almost certainly a dude.

According to Wikipedia, the guy named it that after seeing an ad for a Sonic game. He unintentionally predicted the link between Sonic and autism.

 

[A tree]

>>the decisions made regarding Havyn's care haven't been for her benefit or comfort whatsoever.

Good lord, yes, this. Please let this poor child go.

Have you ever been approaching the end of a dogs life and having to make the call on is it time to euthanize?
My god its so hard when they're still looking at you with those eyes and that tail.

Now imagine it's your child.
Now imagine you can't euthanize. You have to wait for them to be actively dying and chose not to take heroic measures. Havyn probably has a DNR for that situation.


So what the actual situation is every time Havyn has a new presenting health issue you have to either
A) treat it with an invasive and unpleasant treatment that will prolong her suffering but give you longer with your child.

B) allow it to deteriorate untreated until it kills her slowly.

And don't forget you are part of a global community all egging you on. All wanting Havyn to live as long as possible. When she dies. Its all over. It will all fall away and you will be left with a memory box and a house full of dusty medical equipment and years of unprocessed trauma that you buried while you got on with the business of trying to love this child.

I know we do low empathy black and white thinking here but it's not as simple as "let's do an intervention for her benefit or not".

Not wanting to shit on OP completely this was an interesting writeup and it's stimulating an interesting debate but I see no cow. If you move in the world of special needs kids this is really nothing out of the ordinary.

 

[Rudy]

I can’t stop thinking about what a bleak existence it is for Havyn and her parents. Amazing write up!

Forgive me if I missed this, but is that something that pops up on a standard genetic test while pregnant? If not, new gear unlocked. How awful would it be to think you have a perfectly healthy baby….

That’s some bleak shit.

 

[Android raptor]

It also probably doesn't help that Havyn has an incredibly rare condition, so even medical professionals only know so much about it. While the prognosis is grim full lifespan/quality of life potential is probably unknown and debated within the medical community because the condition is so rare (so only a handful of cases to compare her to).

Forgive me if I missed this, but is that something that pops up on a standard genetic test while pregnant? If not, new gear unlocked. How awful would it be to think you have a perfectly healthy baby….

Doubt it's something routinely tested for, Havyn is one of only 40 kids known to be living with her condition in the world.

 

[jimothyleery]

What would have happened to a kid like Havyn if the parents declined to insert the trach, back near the beginning?
Is that a potential way a parent could accelerate the endgame, or would doctors eventually order one put in.

 

[A tree]

What would have happened to a kid like Havyn if the parents declined to insert the trach, back near the beginning?
Is that a potential way a parent could accelerate the endgame, or would doctors eventually order one put in.

The parents could choose at any point but once you've picked the warrior role and solicited the online army you have picked your path and therein lies the argument that the mother belongs here.

But on my heart I can see how in the madness of living grief the path is picked because it offers the most comfort in the moment and then the cost fallacy is sunk.

How do you then turn around to your army of fans and say "we've decided to change course and decline life sustaining treatment for our little miracle and to let her pass. It will be slow and it will not be pretty". Can you imagine the way the Catholic superfans would turn on them?

 

[jimothyleery]

How do you then turn around to your army of fans and say "we've decided to change course and decline life sustaining treatment for our little miracle and to let her pass. It will be slow and it will not be pretty". Can you imagine the way the Catholic superfans would turn on them?

I guess you just shut down the social media pages, make your personal pages private, and retreat back into 'normal' life. Havyn's parents are not celebrities, and would quickly be forgotten.

 

[A tree]

I guess you just shut down the social media pages, make your personal pages private, and retreat back into 'normal' life. Havyn's parents are not celebrities, and would quickly be forgotten.

It sounds so easy doesn't it?

 

[FarmVille]

The parents could choose at any point but once you've picked the warrior role and solicited the online army you have picked your path and therein lies the argument that the mother belongs here.

But on my heart I can see how in the madness of living grief the path is picked because it offers the most comfort in the moment and then the cost fallacy is sunk.

How do you then turn around to your army of fans and say "we've decided to change course and decline life sustaining treatment for our little miracle and to let her pass. It will be slow and it will not be pretty". Can you imagine the way the Catholic superfans would turn on them?

The idea that the only reason parents are doing this is because of online fans and following is based entirely on your imagination.

They are acting in the same exact psychological blueprint that parents with medically complex children have played out thousands of times over since the invention of modern medicine.

You are seeing a process that is weird, scary, and completely illogical and trying to reframe it into something that fits into your worldview. Which is women seeking validation online.

 

[A tree]

The idea that the only reason parents are doing this is because of online fans and following is based entirely on your imagination.

They are acting in the same exact psychological blueprint that parents with medically complex children have played out thousands of times over since the invention of modern medicine.

You are seeing a process that is weird, scary, and completely illogical and trying to reframe it into something that fits into your worldview. Which is women seeking validation online.

I dont think you can really say that to me because for a short period I was a woman in that position and my instinct was not to go to the internet or prolong the suffering it was to pull the plug.
After the plug was pulled, there were communities I became part of where I saw plenty of women do the same thing only without the child. Become a warrior, enlist an army.
It left me cold and I personally took a much more private route. Its my feeling that there is a much more private route to be taken to all this. There may be an instinct to keep the baby going but there is also an instinct to end the suffering. I assure you of that.
For a far, far longer time the instinct with a very obviously deformed child was to leave the abomination out on the mountainside to perish.
This was understood. The thing was a curse. Someone had sinned. A demon had been spawned. Whatever the local mythology allowed for.
We used to have an understanding that a mercy killing was a thing. Keeping life going at all costs was only possible very very recently.

In fact I'd argue that the ancient instinct of which you speak is actually to get pregnant again and have another go.

Have you considered that you also have a personal worldview through which you are seeing this?

 

[FarmVille]

I dont think you can really say that to me because for a short period I was a woman in that position and my instinct was not to go to the internet or prolong the suffering it was to pull the plug.

I’m sorry that happened to but I can tell you this because the personal is not the aggregate experience. I’m saying everything she is doing is a completely normal reaction that has been clinically recorded thousands of times over and over verbatim long before the appearance of Facebook groups.

That’s the personal worldview I’m bringing, clinically dry shit you could read on epub with graphs on survey responses. Trying to peer inside her head and explain her motivations based on a description of antibiotic treatments is frankly bizarre.

 

[A tree]

I’m sorry that happened to but I can tell you this because the personal is not the aggregate experience. I’m saying everything she is doing is a completely normal reaction that has been clinically recorded thousands of times over and over verbatim long before the appearance of Facebook groups.

That’s the personal worldview I’m bringing, clinically dry shit you could read on epub with graphs on survey responses. Trying to peer inside her head and explain her motivations based on a description of antibiotic treatments is frankly bizarre.

I'm really sorry to sound like a redditor but source please?

All or majority of mothers faced with a clinically complex child will chose both the most invasive and life prolonging treatments plus maximum social media attention over the traditional approach of take them home and love them for as long as you have them? Is that your contention?

It just doesn't ring true. Plenty of parents don't choose the most invasive treatments. Many choose quality over quantity of life. Many are deeply private about it.

I'm not a stranger to this world. I know parents of medically complex children and the complexity of these decisions. It's so much more than blind instinct to keep the spawn alive at all costs.
You started off with a really good point but I'm not sure where you're going now.

 

[Android raptor]

Some people also probably have an easier time accepting their kids prognosis is poor than others. I think some people definitely get pretty deep into denial, which is pretty understandable. It just becomes cow territory if they start using the kid to grift or shill pyramid scheme crap or otherwise do blatantly shitty things.

 

[A tree]

Some people also probably have an easier time accepting their kids prognosis is poor than others. I think some people definitely get pretty deep into denial, which is pretty understandable. It just becomes cow territory if they start using the kid to grift or shill pyramid scheme crap or otherwise do blatantly shitty things.

And sometimes the prognosis is wrong. Sorry for yet more PL but the spud relative in my family was never meant to survive early childhood. The parents took him home and made him comfortable. His mother refused a PEG tube even though it would have made her life easier, wanting him to experience food. They kept him comfortable. He has a DNR and seizes and vomits blood and codes regularly and they don't do heroic measures and he just doesn't die. He's about to turn 33. Nobody was prepared for this to happen. His poor mother is a husk.

Nobody has a crystal ball in these situations. All you can do is conduct yourself with dignity.

 

[booklover]

There's a lot of comorbidity between autism and Ehlers-Danlos syndrome.

What would have happened to a kid like Havyn if the parents declined to insert the trach, back near the beginning?
Is that a potential way a parent could accelerate the endgame, or would doctors eventually order one put in.

I got the impression that they thought the trach was going to be a temporary thing.

 

[Sparkling Yuzu]

Some people also probably have an easier time accepting their kids prognosis is poor than others. I think some people definitely get pretty deep into denial, which is pretty understandable. It just becomes cow territory if they start using the kid to grift or shill pyramid scheme crap or otherwise do blatantly shitty things.

Havyn's mum uses it to shill t shirts.

 

[Uzuki]

Every time I see these kind of pics I feel a natural instinct of wanting to stomp their head.
I'm not really a psycopath or anything so this must be just some sort of primal instinct shit.

 

[batteredpancakes]

No idea if this women has been mentioned but I've been following her for awhile.
Tik Tok

This lady and her husband both have achondroplasia. Unfortunately when she had non-identical twin girls they inherited both the dwarfism genes and have double dominant achondroplasia. Regular achondroplasia is largely benign but having a double homozygosity causes a bunch of issues. This form is usually considered lethal and mostly produces miscarriages.
Despite this, both managed to pull through the first few weeks. Sadly one of the girls did pass away. Most of her account is showing off the other girl off.

Unfortunately she hasn't posted in awhile. I'm wondering if the other girl has passed away.
Here's the most recent tiktok involving the baby.

She's about 2 years old here. She can't walk at all and she seems to not be able to talk. Even though the mother does reply a lot to comments she goes silent when people ask these types of questions.