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

[LonesomeDud]

@choccy milk

A virtue lies between two vices. On one side, you have callousness for humanity and spirit. On the other side, you have insanity driven by desire, which is a real problem. For example: Robyn has this desire to be this supernatural earth mama and important person and Luna's humanity becomes this vehicle at the expense of Luna. That's horrible; you're right.

It's hard to be the virtuous person who tells the truth with compassion. It's damn near impossible to be the person who acts on truth with compassion here. I just don't know enough to say, but it doesn't mean someone else doesn't know.

 

[Allo Vera]

Also, there is nothing wrong with giving Havyn a trach so she can live out her days with her family. Why does she need to die in a hospital so it's more inconvenient and expensive and heartbreaking for everyone?

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.

 

[LonesomeDud]

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.

Cost cutting for insurance. An open NICU/PICU bed for someone who will benefit more. The comfort of suffering in your home rather than a hospital.

You are terribly wrong if you think in home hospice for children is typically about defying authority. I hope you never experience what it's typically about.

 

[AnOminous]

But GOD, I don’t think I’ve ever seen a more hopelessly sick looking baby in my life.

We've definitely had worse, like severe holoprosencephaly or babies with their brains outside their skulls, or without even properly formed skulls or faces in general. The SHH gene (autistically named after Sonic the Hedgehog) is the source of a lot of genuinely horrific mutations (so thanks a lot whatever sperg named it that).

 

[TheCakeIsALie]

Cost cutting for insurance. An open NICU/PICU bed for someone who will benefit more. The comfort of suffering in your home rather than a hospital.

You are terribly wrong if you think in home hospice for children is typically about defying authority. I hope you never experience what it's typically about.

Everyone in this thread needs to watch A Lion In The House on Netflix. It follows kids with cancer, it will break your heart and show you what suffering is, and the importance of hospice and what it’s like to be the doctor that has to send kids home to die. Maybe some of you will learn something.

It takes a special person to be a pediatric hospice worker and anyone who thinks hospice exists solely as a cost cutting measure (nope..it’s not) needs some humility.

Ps. Hospice isn’t a place. It’s a philosophy. You can have hospice in a hospital and that doesn’t save anything in terms of money.

 

[LonesomeDud]

Everyone in this thread needs to watch A Lion In The House on Netflix. It follows kids with cancer, it will break your heart and show you what suffering is, and the importance of hospice and what it’s like to be the doctor that has to send kids home to die. Maybe some of you will learn something.

It takes a special person to be a pediatric hospice worker and anyone who thinks hospice exists solely as a cost cutting measure (nope..it’s not) needs some humility.

Ps. Hospice isn’t a place. It’s a philosophy. You can have hospice in a hospital and that doesn’t save anything in terms of money.

I know a hospital that has an annoying habit of leaving critical care beds filled up when they should have more beds for chronic vents/hospice. It isn't the same skill set for nurses. Let them learn on people who won't be too impacted from being "unplugged" too long before the new nurse figures out what that awful alarm is and why their oxygen is dropping so fast.

 

[TheCakeIsALie]

On the opposite side of Havyn is Paisley. That woman (Paisley’s mom) as has said before, does not give her child the oxygen needs she requires and I truly wish that Paisley and Luna would both pass away. Luna was a birth injury and all, not a genetic or de novo case, and both should be on hospice. Luna will die regardless, and what, the oldest case of TD was a 29 year old but they don’t live, do they? They just suffer every day until they die.

It’s one thing to be living on a trach but still be able to live life, it’s another thing to be on a trach and a potato for however long they’ll “live”.

 

[Choroid Plexus]

I feel for Havyn and her family, I really do. I can't even imagine having a seemingly healthy newborn then watching her decline so quickly.

The lolcow attributes are there though. Havyn's parents aren't anywhere near the level of some of the other families ITT, but I really hate the way they're dragging the poor kid (who the mum states can't regulate her temperature) to the beach for bikini photos.

I'd be interested to find out why some of the specialists are dropping Havyn as a patient.

 

[Allo Vera]

Cost cutting for insurance. An open NICU/PICU bed for someone who will benefit more. The comfort of suffering in your home rather than a hospital.

You are terribly wrong if you think in home hospice for children is typically about defying authority. I hope you never experience what it's typically about.

I was clear in the three examples I gave - in the U.K. where cost cutting for insurance isn’t a factor - where there was no benefit whatsoever in moving a sick/unstable/brain dead patient, that it was about fighting back against doctors and demanding the opposite of whatever they recommended.

Insurance issues isn’t something I’d considered, but again, my question was specifically about the benefits for the child of being sent home, not the benefits of saving money or freeing up PICU beds.

I’m not sure where you got the impression that I believe everyone who wants home hospice for their kid is just being awkward. I’m just familiar with a fairly well-trodden path that so many lolcow parents go down.

 

[LonesomeDud]

I was clear in the three examples I gave - in the U.K. where cost cutting for insurance isn’t a factor - where there was no benefit whatsoever in moving a sick/unstable/brain dead patient, that it was about fighting back against doctors and demanding the opposite of whatever they recommended.

Insurance issues isn’t something I’d considered, but again, my question was specifically about the benefits for the child of being sent home, not the benefits of saving money or freeing up PICU beds.

I’m not sure where you got the impression that I believe everyone who wants home hospice for their kid is just being awkward. I’m just familiar with a fairly well-trodden path that so many lolcow parents go down.

I think the therapeutic value to the family exceeds the harm in moving, in most cases.

I think there are definitely doctors in favor of home deaths when optional, and believe they are worth the tremendous burden they can create.

 

[Niuhp]

Insurance issues isn’t something I’d considered, but again, my question was specifically about the benefits for the child of being sent home, not the benefits of saving money or freeing up PICU beds.

I think the therapeutic value to the family exceeds the harm in moving, in most cases.

I think there are definitely doctors in favor of home deaths when optional, and believe they are worth the tremendous burden they can create.

I think when we talk about things such as costs, benefit, harm, burden etc. it's easy to think of these things as abstract concepts but the material practicalities of such are often far less comforting or straightforward. In cases such as Gard, Evans and the like, moving them home would be a large logistical undertaking that involves the transit of equipment and the necessary nurses and technicians just to ensure the children in question wouldn't pass en route and even then the risk was immense. I question the ethics of requiring such staff to participate in what may be a very traumatizing process in prolonging a futile situation through such stressful obstacles. I also wonder when it comes to the emotional benefit of such things, do the positives outweigh the potential negatives for the entire family unit and not only the parents? Especially siblings experiencing such prolonged and distressing disruption into their lives? I don't mean to be callous as the parents' emotions require some consideration, but they certainly can't be the singular consideration.

 

[TheCakeIsALie]

I was clear in the three examples I gave - in the U.K. where cost cutting for insurance isn’t a factor - where there was no benefit whatsoever in moving a sick/unstable/brain dead patient, that it was about fighting back against doctors and demanding the opposite of whatever they recommended.

Insurance issues isn’t something I’d considered, but again, my question was specifically about the benefits for the child of being sent home, not the benefits of saving money or freeing up PICU beds.

I’m not sure where you got the impression that I believe everyone who wants home hospice for their kid is just being awkward. I’m just familiar with a fairly well-trodden path that so many lolcow parents go down.

Depends on the situation. A kid whose on chemo but got told it’s not working and there’s no option may just want to get the heck out forever because they associate the hospital with not getting better. What’s the point of the hospital if you can be at home with your friends and live out your days semi normally?

when youre in the hospital it’s draining and restricting. people always bothering you, hospital acquired diseases are a thing, hospital beds are uncomfortable, no privacy, etc.

 

[jimothyleery]

I'm going to give Havyn's family a pass on their actions.

This is a young family who watched their child deteriorate in front of their eyes, at no fault of their own, and now know they basically can't have anymore children or risk the same fate.

They are holding onto their disabled child for as long as they can, as this is the only biological child they will ever have.

I feel sad reading those posts, not angry.

Regarding the photo of Havyn at the beach -- yeah, that's a bad and awkward photo.
But we give the other parents discussed here heck for not stimulating their potato kids.
This mom is actually making an effort -- birthday parties, swimming, etc.
If there's a flicker of a brain in this spud, I hope it can appreciate the mom trying.

 

[FarmVille]

Havyn doesn't progress. The therapies are meaningless. The doctors told her mother that she can't survive without a ventilator, and most parents would make the humane decision to remove the tube and allow her to transition naturally. Instead they're choosing to artificially prolong her life with expensive treatments that we don't even know she's conscious for. Havyn's mother is more interested in her newfound identity as a Disabled Child Mama Savior and her child's capabilities as a Living Doll than anyone's real quality of life, including hers and her husband's. You can't just fix a mitochondrial disease. Havyn's body has already been destroyed by her illness.

I think there's something incredibly obnoxious about toting around a corpse of a child and expecting everyone to play along and pretend there's nothing deeply wrong with it.

You are completely, completely 100% wrong about this. Completely wrong. “Most” women who give birth to extremely sick children, particularly children with complex, rare diseases don’t just say “fuck it this is the humane thing to do” and decline life prolonging interventions. Even in cases where they abstractly understand why it should be done they don’t want to do it. It’s not cow behavior it’s basic human impulse.

These people thought by all indications thought they were giving birth to a healthy baby girl and by no fault of their own they got a potato. It’s a horrifying situation no one asks for. All she’s posting is medical saga.

Also considering how much money are health care system pisses away on absolutely goddamn nothing bitching about money spent on procedures on babies is one of the stupidest things KF regular participates in.

 

[Disgruntled Pupper]

You are sassy, snuggly, and so unique

Oh God, why do they all do that? Gwen, Robyn, I'm pretty sure even Archie's mom pulled out "sassy" at one point. The word is a red flag at this point. The "snuggly" bit also worries me, you can see how the instinct to cuddle your baby gets twisted with these women because it never shuts off. The kids become permanent newborns in their mother's mind even when they're 2, 5, 10, 16 years old and their mother's get a very sick rush of dopamine from having a perma infant. Same thing with choosing to extend life BECAUSE GOD while endless time and money and modern medicine are what is keeping this child here. How come the idea that maybe Havyn was meant to die is never part of God's plan?

The head raising video was even more pathetic then what Robyn puts out.

I wonder if any of the bacteria that was festering in her trach had anything to do with the pool or beach trip.

But I think the most interesting part was that she had to look for not one but two other doctors. I wonder if it's because Havyn is so clearly on the way out, because Bridgette is a demanding cunt, or a combo of both.

 

[GainsGoblin]

Yeah, the doctor-shopping gives me pause. Also the recurring UTIs and trach bacteria…Are they letting her sit in dirty diapers and not cleaning the trach properly? Or is this something to be expected with this variety of spud?

 

[booklover]

Everyone in this thread needs to watch A Lion In The House on Netflix. It follows kids with cancer, it will break your heart and show you what suffering is, and the importance of hospice and what it’s like to be the doctor that has to send kids home to die. Maybe some of you will learn something.

It takes a special person to be a pediatric hospice worker and anyone who thinks hospice exists solely as a cost cutting measure (nope..it’s not) needs some humility.

Ps. Hospice isn’t a place. It’s a philosophy. You can have hospice in a hospital and that doesn’t save anything in terms of money.

Earlier in this thread, I mentioned a woman I know whose husband was diagnosed about a year ago with glioblastoma multiforme. He was sent home for hospice, mainly because that's what they wanted if he didn't HAVE to be in the hospital, and last I heard, earlier today, his blood pressure was dropping rapidly.

Hospice is not about treatment. It's about enhancing quality of life for terminally ill people and their families.

Only once when I was practicing did I personally see a child in hospice, and I can tell you about it because I read about it in the newspaper. She had a benign brain tumor that nevertheless could not be removed, and it took her life. She was 2 years old, and she was allowed to die at home as her parents wished.

 

[Flourishing Pinecone ❧]

Who was arguing against home hospice? Everyone should be able to die where they want, sometimes people prefer to be in the hospital and that's fine.

Havyn's case is probably a bit borderline, nowhere near as bad as Robyn or Gwen, but feels like a lot of prolonged grief/cope and dragging out the inevitable for this poor child. It's hard to gauge if Havyn gets any enjoyment in her life, but it is good that she's getting more stimulation that Paisley seems to get.

 

[LonesomeDud]

Yeah, the doctor-shopping gives me pause. Also the recurring UTIs and trach bacteria…Are they letting her sit in dirty diapers and not cleaning the trach properly? Or is this something to be expected with this variety of spud?

Baby trachs are pretty gross. Everything is close to everything, prone to cross contamination, and sterile or even clean fields don't exist with kids. She looks continually damp and ballooned with massive amounts of steroids. Not surprised at the problems, even with aggressive cleaning.

 

[Agent Abe Caprine]

I think there's a greater than non-zero chance. I really struggle to believe anyone looks at that and thinks, "Man, that kid looks pretty hot."

Pedophiles are attracted to most unsexy demographic in the universe. Children. You are overestimating their standards.