Estás usando un navegador desactualizado. Es posible que no muestre este u otros sitios web correctamente. Deberías actualizar o usar un navegador alternativo.
🤝 CommunityTard Baby General (includes brain dead kids) - Fundies and their genetic Fuckups; Parents of corpses in denial
That is so horrifying as a former medfag. What the fuck does that even mean..stepping outside of protocols? Why in the fuck should the state invest billions of dollars in care for a near potato that has never or barely lived outside of a hospital to have a transplant or any other insane procedure like that? Organs, especially fucking pediatric ones, should always go to the best match that has the best chance at living a long, productive life outside the walls of a fucking hospital.
The poor siblings of these kids.. a parent spending so much fucking money, time, and energy on their chromosomally fucked child. I’m not saying give up and don’t give them a chance but there is a fucking reason protocols exist; they’re evidence based.
Edit to add: guess who’s ass is on the line when a medically fragile kid with barely a smidge of functioning cortex has a barely functioning heart or hundreds of seizures when sick, gets a transplant and has to be on immuno-suppressant drugs. Give me all the hats, and my apologies if I’m mixing up my tards, but guess who will be the first to sue when a doctor DOES go outside of protocols.
The poor siblings of these kids.. a parent spending so much fucking money, time, and energy on their chromosomally fucked child. I’m not saying give up and don’t give them a chance but there is a fucking reason protocols exist; they’re evidence based.
I hope those poor kids are getting quality therapy to cope with the guilt of feeling so very relieved that the sister they never really met is dead, and now they get Mommy back. Kinda...
I hope those poor kids are getting quality therapy to cope with the guilt of feeling so very relieved that the sister they never really met is dead, and now they get Mommy back. Kinda...
God, I hope so with all the fucking . The parents need serious interventions and therapy themselves, and I hope someone in their communities is making recommendations for all of that. As a parent, I somewhat understand a chimp out and grief and feeling powerless and responsible for shit, but I do not understand making your tard baby suffer and go through all this pain they will never understand at the expense of everything else, while simultaneously showing the world every fucking detail of their suffering.
I’m new to this thread, and unlike some kiwis I’m not a huge proponent of eugenics (at least for stuff that is not severely life limiting or horribly painful). But some of these kids are just born with IWL and more doctors need to stop the charades and be real with these nutcases from the get go and mandate therapy for delusions. Otherwise, it really looks like all they care about is being able to bill for services.
Does anybody know what was wrong with veya specifically to make her appearance that way? Was it just because of her age?? Heart problems yeah, sure, but I don't think a heart malformation would make a kid's face look like that. I thought she was like maybe 6 months old when she passed but 2 years is baffling to me.
I know you know all of this because you’re the one who farmed, but holy shit. First slide, “Veya was never born complex, this is all from heart surgery” my ass. Holy shit, the delusions. How many days did Veya live outside the hospital? How many weeks did she live off of any oxygen at all? None to both. She survived only a couple days without oxygen support due to her heart condition and pulmonary hypertension. Blaming this all on heart surgery is serious delusional thinking.
For those who are not medfags, pulmonary artery hypertension, happens in about 30 percent of kids with DS, usually due to AVSD (atrioventricular septal defect) which causes increased arterial pressure in the main blood vessel that pumps blood to your lungs. Even though it is an artery (blood leaving the heart), it is not oxygenated. A lot of people without medical knowledge get that confused. Depending on the severity of AVSD, and how well the heart walls are formed between the ventricles and atria, blood can either flow between the two atria, between the two ventricles, or the heart walls and valves can be completely fucked and this is completely incompatible with life without going on ECMO and then transplant, if they survive that long and don’t have compounded conditions.
So in a healthy heart, deoxygenated blood enters the heart via the two vena cavae and goes into the right atrium, from there it goes into the right ventricle (lower part of the heart), and then goes into the pulmonary arteries that lead to the lungs. After being oxygenated by the lungs, blood is returned to the heart via the pulmonary veins and comes into the left atrium, then it goes into the left ventricle which is (normally the largest part of the heart), and is then pumped out of the heart through the aorta to go to the body with oxygenated blood.
In a healthy typical fetus, there is a ductus arteriosus, which is a temporary blood vessel that connects the pulmonary artery and pulmonary vein to bypass the lungs since a fetus is not using them to exchange gases yet. It typically closes within a couple of days of being born all on its own. Occasionally, even healthy newborns do not have it closed and that is called a “patent ductus arteriosus”, or PDA. This can cause a benign or symptomatic heart murmur and occasionally needs surgery in otherwise healthy children.
In cases of atrioventricular septal defects, even with less severe ones only affecting the two ventricles every time the heart beats blood goes from two or all chambers into the main pulmonary artery. So instead of just lower pressured blood leaving the smaller left ventricle, you have blood pumping from both the right and left and right (bigger and stronger) ventricles into the pulmonary artery, which puts a greater pressure of blood into the lungs. You also have less pressure on the oxygenated blood that is being pumped out to the body via the aorta.
When this increase of pressure happens in the pulmonary artery, you get damage to the the pulmonary arteries which causes the arteries to narrow, which further increases pressure. This is why it took a few days for Veya to get worse and worse. Pulmonary hypertension causes all kinds of problems because it breaks the blood vessels in the lungs, so it can cause bleeding and clots and all kinds of damage. Then the leakage of blood between the atria, ventricles or both in turn causes edema throughout the body because blood pressure in the aorta is not as high and venous return is not high enough to be able to return through the heart and out into the lungs as well.
If you look back at the posts you so kindly farmed, Veya was going to be moved to comfort care only before her family pushed for a last minute Hail Mary to close her patent ductus arteriosus which could take some pressure off the lungs since there was one less link between the heart and the pulmonary artery. She also talks about how they were giving the three meds for the pulmonary hypertension, and that is standard of care for the type of defect Veya had. In summary, Veya was “lucky” to live as long as she did. I really suspect that her heart was a lot less developed than her family is letting on. My reason for that suspicion is that even with her “big surgery”, she continues to have serious edema. Her lungs were fucked from the beginning and it’s not surprising she couldn’t get better.
I haven’t read enough of the posts to see what the cause of her liver failure was, but I strongly suspect it was due to TAM, which is a problem with too many immature blood cells that is known to occur in kids with DS. It’s also possible she just didn’t have enough ducts either as that’s common in DS. She had a lot of very challenging shit going on and it’s both horrific and remarkable she survived the PDA surgery and the open heart surgery.
Edit: I’m gonna want another medfag to confirm this, but I’m 99 percent sure the whole “overdose on potassium thing” did not cause Veya to have any additional liver damage. It’s possible it could cause heart issues I guess, but the other shit genetically plus being sick are much more likely to have been why she never got better. If I truly had to guess, I would guess the reason they stopped invasive options was due to the pulmonary hypertension that didn’t resolve after the open heart surgery. You can see in this post, in SLIDE 43, that Veya has started SERIOUS edema again, even after the liver procedure where she no longer looks yellow because of her liver bile ducts being cleared. This is the timeframe where she’s says “they gave up on her”. The combination of needing both a heart and liver transplant is just not going to happen in a child who is genetically fucked and who already had so many lung issues and has NEVER been able to live outside the hospital.
Edit 2: Already being picked up and posted on the Facebook for people to rage at. I hope the hospital sues the fuck out of them.
Edit 3: went back to clean up my sperg for clarity.
How can this idiot share that her kid was born with Down Syndrome and no chambers in her heart but say “she was not medically complex at birth.” I mean wow
How can this idiot share that her kid was born with Down Syndrome and no chambers in her heart but say “she was not medically complex at birth.” I mean wow
Brittainy (This is how she spells it not Brittany)'s daughter has 4q deletion/translocation syndrome. Also, if you are bagging your child daily because they stop breathing and need CPR maybe instead of owning it to the hospital to state it shows how good you are take them to another fucking hospital. Her kids (13 and about 10) and a nephew who is paralyzed from waist down (about 10 or so), are expected to participate in life savings measures during this. Of course Veya's mom is right there in the comments.
0:08
0:07
0:06
0:07
0:07
0:07
0:13
Didn't realize she literally took her daughter and ran to another state without any discharge or anything against medical advice. Took a kid that she has admited has multiple cardiac events that require full on cpr on a plane across country. In reality they had told her that they would discharge if nursing support was in place due to how medically fragile her daughter was. But Veya's mother talked her into ditch and run.
The delusion is so strong with these people. Life is unfair and it REALLY FUCKING SUCKS that not every child is healthy and thriving, but not every medical problem can be fixed. If your child has an inoperable, complex, inborn genetic disorder that has caused them to DIE several times in front of their siblings, anything a new hospital does is just delaying the inevitable. It’s not ableism, it’s reality.
The delusion is so strong with these people. Life is unfair and it REALLY FUCKING SUCKS that not every child is healthy and thriving, but not every medical problem can be fixed. If your child has an inoperable, complex, inborn genetic disorder that has caused them to DIE several times in front of their siblings, anything a new hospital does is just delaying the inevitable. It’s not ableism, it’s reality.
Of the two known genetic defects she said Revie has, particularly the 4q syndrome one is severely life threatening and life limiting, in most cases. I’m going to guess it’s 4q deletion not mosaicism or any other variant of that because of the very typical features she has of the deletion of a bigger chunk of the middle of Chromosome 4. Just a bit more and she would probably have been miscarried. It is rare and you never know just how long each kid with this disorder will live, but 2-4 years is average. It is not atypical to take months to suspect that there is a serious genetic disorder and diagnose it with 4q. Because of the severity of her seizures and the fact that she has significant motor delays and hypotonia at 4 years old, I also suspect it is not a small deletion of just the end of the “q”arm, which can result in less severe cases that actually can pass it on in AD pattern. I attached an image marked up with a circle around the type of chromosome layout number 4 has as well as a circle around what a Q arm means. Chromosome 4 contains about 6 percent of your DNA.
Anyway, she’s actually “lucky” to have lived as long as she has given the rarity of survival to this age with a more severe case. I suspect the reasons why doctors refused to trach her was because she will eventually end up like other spuds here on the farms and prolong her suffering. As others have mentioned, once seizures stop being able to respond to medicine as well or totally, it’s bad news bears for what’s left of the brain and keeping them out of pain and suffering with other meds. Given the likely severity of her genetic defect and the fact that she will need lifetime care in every way, the family is prolonging the inevitable with every intervention.
I’m going to be curious to see if the team at the new place she brought her to will do the brain implant to try and stop seizures, and whether or not it will work, and if not what the family will push for. (Edit: will they push to try a Corpus callosotomy or hemispherectomy? I do really wish she would share the EEG and brain scan so we can see for ourselves. Neuronal migration, chiari, corpus callosum defects, etc have all been found in this type of defect. Corpus callosum is the specialized tissue that allows the brain to communicate between hemispheres. Issues with that area specifically are a big reason for certain seizure disorders.)
The poor older girls and the trauma of this case is horrific. As is the case with Veya, the situation likely changed over time and both of these moms were mad when doctors originally had different plans. They are likely hearing a lot of what the best case scenario and outcomes are and ignoring the other possibilities communicated to them. Then, the next hospital becomes the good guy because they know they need to communicate very clearly with them and approach things more carefully, even though they have the same outcome.
The real tragedy is not having a social worker/ patient advocate available at all times to help make sure the family understands each and every conversation had and make sure they understand why things have changed.
This screams “written by chat gpt,” down to the emojis before each “point” she’s trying to make. It doesn’t make her sound any more convincing, just draws more attention to how fucking nuts she is.
“Brittainy” is definitely one we’ll be watching now. I assume she’s LDS which should add to the drama. Her husband looks half her age and I can’t tell if he’s all the kids’ father or just the youngest’s. The other kids look like teens, 10+ year age gap.
This screams “written by chat gpt,” down to the emojis before each “point” she’s trying to make. It doesn’t make her sound any more convincing, just draws more attention to how fucking nuts she is.
Edit: she actually talks about using ChatGPT to explain medical results and scans to her. Yikes.
I actually went to her instagram to try and determine if she had any type of prenatal testing done because an NIPT maternal blood test would absolutely have shown up as having a positive for abnormalities. I wanted to know whether she had any kinds of other further fetal genetic testing and anatomy scan. I was unable to find anything except the fact that she and her husband were quitting the 9-5 life prior to this pregnancy and that she is trying to be a fitness influencer and talks about CrossFit. Oh, and I noticed that she immediately starts blaming doctors for not knowing something is wrong as soon as the kid is born even though her mother’s intuition thinks there is. Kids with 4q (the deletion one, not the eye disease one) are usually not diagnosed for months unless the mother does standard testing she should’ve at her age.
I really strongly think she’s deleted a bunch of stuff and gone back and revised it over time to fit her narrative that she knows things are wrong before doctors will tell her. The whole eye removal saga is crazy. She tells the story that the ER wouldn’t do anything beyond say she has pink eye. The ER is for emergencies and unless she was going to die or serious ocular pressure existed, of course they aren’t going to do shit in a medically complex kid. A lot of ERs can’t even get an ophthalmologist in for hours overnight, and that’s in a large city. The girl has a big primary genetic disorder AND a secondary genetic disorder affecting her eyes. Yet, she somehow manages to see the specialists and have an operation to remove the eye very quickly after the ER visit. (Eye roll hehe.) as a genetically fucked kid with a known disorder affecting eyes, where was the ped ophthalmologist following her? No mention of that; only ragging on the hospital staff for a very clearly chronic issue.
Anyway, after that I said fuck it I’m done with this OTT and noped out because I saw all I needed to see to know she’s trying to set up some kind of malpractice (or get more gofundmebux) and sensationalize and revise everything that’s happened while traumatizing her eldest kids and being all “God’s so great blah blah blah.”
Edit: I tried to spoiler the eye shit but I’m retarded and now too lazy to fix.
I am MATI. What a shit fucking mother. She unashamedly admits she pushed off her oldest daughter's (Ivy) medicaid care while Veya was in the NICU and when her daughter had surgery only her father was there for her. Mommy was too busy clinging to her bloated downy retard who she'd been clinging to for months at that point, who was always dying and ultimately did die despite all her MOMMA BEAR WARRIOR bullshit and time and money wasted. Those girls only got to see their mom on rotating alternative weeks, and spent the entire time with her staring at the disgusting bloated lump. The hospital was trying to get Veya closer to home, I'm sure with the rest of the families needs in mind, and all the mom does is shittalk them for dating to care about anything other than the retard and lamenting that it only made the potato worse. Veya's mom absolutely threw her other girls under the bus, and for what?
Her entitlement and delusions about common medical problems is amazing. The lead-up to the big reveal that Veya caught RSV sure was something.
Somewhere non-specific in my family tree there's a new baby that I'm getting regular pictures of and I'm so absolutely struck by the night and day difference of a healthy newborn and the spuds in this thread. The little sprog is brand spanking new but even in still photos you can see the spark in their eyes. Compare that to the blank lifeless stares of taters like Veya and it brings me a renewed sense of how cruel keeping these perma- pediatric patients alive is. I get that having to make the call to put your own child on palliative care must be the most heartrending thing imaginable but the fact that intellectual common sense doesn't take over at certain point is one of those enduring cruel quirks of humanity. This thread really does make me grateful that so far my family has been blessed with healthy kids all around.
“Brittainy” is definitely one we’ll be watching now. I assume she’s LDS which should add to the drama. Her husband looks half her age and I can’t tell if he’s all the kids’ father or just the youngest’s. The other kids look like teens, 10+ year age gap.
I think they all have the same dad, but I’m not 100 percent sure just yet. I’m busy farming, but I can confirm that they are absolutely Mormon with certainty. I don’t want to say too much yet till I compile things, but they’ve already been through several hospitals with multiple ones telling the mom she’s crazy and causing harm to her child.
The real tragedy is not having a social worker/ patient advocate available at all times to help make sure the family understands each and every conversation had and make sure they understand why things have changed
This is really important and I think hospitals could really help themselves by doing this. Most people have low medical literacy, and sadly many doctors have low dummy-literacy, meaning they can’t explain things well to people who have trouble understanding.
I am not in the medical field but my medical literacy is high-I remember once hearing a doctor explaining to a family that grandpa was going to die because of xyz. I understood but the family didn’t. Unfortunately, this doctor was unable to say anything simply without using technical medical terminology and the family was stunned, asking why. He kept repeating the same Latin-based words over and over, fumbling his conversation. I almost got out of my bed to help but of course, didn’t. Fortunately a nurse overheard this and called in another doctor to explain, but it’s always stuck in my mind how poorly that doctor communicated the worst news these people would hear. And he can’t be the only one.
People who don’t understand something tend to fill in blanks with dr google, ChatGPT or the stories of others. So a truly hopeless situation becomes hospital discrimination. They’ll hang on a word (future liver surgery possible) and not understand that things can deteriorate, it may no longer be possible, etc. Knowing this happens so often, hospitals would do well to hire an “outsider” who understands what’s happening and can explain without ever making it seem that yes, someday X will happen. I don’t think doctors really have the time to teach these families the intricacies they need to know to not blame them when things go downhill or understand what these people are imagining. These moms pretend like they understand because they don’t want to look stupid in front of a doctor, but really do not.
Decades ago we lived in a society that trusted doctors, cops, authorities but those days are long past. We live in an era of conspiracies and while most of us are not susceptible, many now are, especially those already in a cult. Hospitals would be smart to try prevention rather than keep high priced lawyers on staff.
I'm mad at the universe right now so please don't think I'm mad at you, but holy fuck! I would've probably become that person but the college debt to pay to risk ratio just doesn't math, especially not in gunville USA, the screaming and spitting is bad enough. And it just keeps getting worse as psychology is shoved aside in favor of medication (psychiatry) and society gets more isolated in little self-reinforcing bubbles. Somebody layed it out nicely in the munchie thread, but support groups without any professional keeping them on topic devolve into almost mini-cults where recovery is bad because you won't be in the group anymore. Add in the right screaming about bootstraps and fixing yourself while the left makes homeopathy out of concepts like gaslighting, and no one actually thinks psychologists know anything.
So yes, we absolutely should, but step one is stop driving psychology students into insane debt while treating psychology like a joke and lol. Absolutely not ranting about you Barbarella, you nailed it: pay social workers not lawyers. Or average them, that would work too I guess.
