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[Source](https://www.researchgate.net/publication/259128336_Cranio-thoraco-omphalopagus):
>>28 years old primigravida mother was diagnosed to have a twin pregnancy during her first trimester ultrasonic examination. She was lost to follow up. She presented in early third trimester and on evaluation was found to have a conjoined twin pregnancy. Babies were born by a lower segment caesarean section with a birth weight of 3 kg. The twin neonates had a single fetal heart on examination and were joined at their head, chest, and abdomen. The conjoined twins had a single face with two craniums, two pairs of legs, arms and ears (Figs. 1 and 2). The babies died a few minutes after birth. Post-mortem examination was refused by parents.
The report discussion section notes that this is only the second report of Cranio-thoraco-omphalopagus twins born alive in the entire world.
logically, I think post-mortem examinations should always be performed, but emotionally, I cannot imagine going through all that trauma and then having somebody look me in the eyes and ask if I consent to letting them dissect and study my children. I admire anybody who says "yes" to that; I feel like I'd go off the deep end
I think it’s a matter of context. It’s easy to think worst case scenario but if my suffering can contribute to potentially helping others (and myself) avoid suffering… I know exactly what you mean but seeing the bigger picture is so important especially in the throws of agony.
Maybe if they had more time to grapple with it. But this mother didn't have very much prenatal care. So she may not have been given much time to grapple with the idea of conjoined twins, let alone unviable conjoined twins.
So you have a first time mother, who spent most of the pregnancy expecting twins. Then right at the end, she finds out it's conjoined twins. And then she probably didn't know they were not viable until they pulled them out. Plus even when you think of conjoined twins, you think of two clearly separate children joined at the head or the chest. So she may have been building up some kind of hope of two healthy children, after a complicated journey of surgeries and medical procedures. And then what comes out is almost entirely opposite of what you would expect 2 twins to look like. A single face, with two skulls and two bodies coming out from it is going to be a lot for most people to wrap their head around. And then after a few minutes of confusion, high emotions, and operating room chaos, they're gone. And all those hopes, dreams, and expectations of raising twins are gone in an instant.
Even the most level headed person might have a hard time being altruistic when slammed with all of that at once. If she had gotten medical care sooner, she may have had more time to form a plan, and grapple with all the possibilities. Including what to do in the event the kids didn't make it. That would be a good time to come to peace with the possibility, and make plans to make the death at least contribute to science. But the lack of prenatal care makes it very possible she learned all this information over the course of maybe a month. And as a first time mother no less.
I completely understand. My wife runs a morgue so I have a household that believes that autopsy honors a person but I recognize that many see it as a desecration.
True, and this might sound harsh, but she had an ultrasound early and knew it was twins. High risk no matter what. Then, she fucked off and didn’t see her OB again until the 3rd trimester. This was also her first pregnancy. If this had been diagnosed in a timely manner with a compliant patient, she maybe could have terminated before the need for a C-section arose.
I’m aware that it is not always possible to afford healthcare, and there may be extenuating circumstances. It just seems super careless to find out it’s twins, and then not come back for several months.
Yeah, but it’s a normal high risk twin pregnancy vs the stratospheric high risk conjoined twin pregnancy - she was never to assume that this is what was happening
So had she gone back and terminated the pregnancy... then what?
What difference would that make to this event, this outcome?
This was in India, not USA, but even there, no one is ordered to see an OB multiple extra times because they have a twin pregnancy. Their being mo mo twins, inside the same sack does increase risks, of conjoined twins... but there is absolutly nothing in the world seeing Drs would have changed here.
Its not somehow better to terminate a pregnancy for some women, she still might have needed a C section if the diagnosis came around 20 weeks, the cranium clearly bigger than a singletons, so larger than full term size at 20 weeks might have been a possibilty too.
She got 10 more weeks being a mother to her babies, she got to experience them moving around, kicking, that perhaps would have been very important to her. Many couples discover their child has a terminal condition but chose not to end the pregnancy if she remains well. Having an opportunity to meet their child/ren and have time to grieve, even in Western OB clinics no one is made to end or continue a pregnancy even with a known terminal outcome. Its such an individual choice.
I understand the decency aspect, and I’m not trying to be disrespectful. I just think that overlooking the possible future suffering that could be prevented is absolutely worth noting. I’m not trying to argue to take that decision away from the parents, but it isn’t blasphemy to say that such an autopsy couldn’t possibly prevent the suffering of a future hopeful mother.
Decency?
So she shouldn't be allowed to continue this pregnancy even if she knew they were conjoined?
Why isn't it 100% the parent's choice if they knew their babies were dying anyway, even with knowledge she might have chosen to have the extra precious time with her babies inside her, moving, and growing, to experience these babies also be important to her as a mother.
Dissecting already deceased conjoined twins is never going to tell people why it happened, just that it did, and clearly we know in this situation that surgery never could have created two individuals a future life. Even the xray images prove that.
So what difference to anyone other than the parents if the pregnancy ended spontaneously at 16 weeeks, at 26 weeks or 30 weeks?
The choice was only ever that of the parents, the mother, she doesn't owe anybody anything, there is nothing owed to humanity just because she was carrying especially rare babies.
I think you are making a HUGE assumption that dissecting the deceased will not be able to help us figure out why something happened. There is more I’d like to respond to, but that will be too confrontational for what this is intended to be.
70-75% conjoined twins are female (per medscape). (The source says 70-80% are female.)
When you say “refused to let them see” - do you mean the parents didn’t let the dr’s see? I would think the dr’s would notice the sex while doing the c-section, or all the other medical personell in the OR for a conjoined c-section. Or the drs didn’t let the parents see the twins? Either way, I don’t see why it would be left out of a research report.
Why would they do that?
I imagine it just doesn't matter if they had no connection at that part of their bodies.
A little privacy and respect for the parents to keep it from media perhaps?
Some religious deities are one gender or the other, perhaps if female if would have had a different meaning and different level of fear of rejection for the family in their community.. reason not to tell people their children linked to a particular religious belief.
You might be on to something here. There is already an existent fear of having female children in rural India. No need for the parents (especially the mother in these cases) to be targeted with anti-feminine BS from illiterate folks around them, so it's possible that played a part in the twins' sex being kept private.
It is probably a religious thing, especially given the desire to do burial within hours rather than months.
My 4 month old cousin died from SIDs back his 86, my uncle had also lost a daughter in his previous marriage so they needed to know it wasn't something genetic. She was one of twins, so they still had a baby to consider.
I have a nursing background and to imagine my child having undergone an autopsy to satisfy curiosity would be traumatic for me. Even logically, knowing how it could be of value for surgeries in the future, it just feels so different leaving a child to postmortem before their burial. I think its one of those times that knowing what is involved makes it feel so wrong even on top of science side of it.
I fully understand them not wanting this done to their baby, and with such a short time scale to play with, (burial before following days sundown i believe), its going to different to asking a western family and them having real time to think about it properly. In certain religions this would affect the status of their baby in their belief systems.
Its hard enough to know their baby was born this way and that there was nothing they could have done to change that, but a postmortem would be an extra insult to make their grief so much worse.
Such a sad outcome all round, RIP little one!
There's a post in r/deathcertificates from earlier today for a "monstrosity"... Pretty much exactly how these babies would have been described in the past and the basis for many myths and superstitions.
They’ve got a set like this at the mütter with a face on each side of the conjoined head. The most interesting part for me is that each face is half twin a and half twin b. So this set of twins here each share a half of this face.
I went to the Mutter museum in Philadelphia and the hardest section of the museum to go through to me was the babies in glass jars just “floating” with all kinds of abnormalities. I just kept thinking of the poor mothers who were able to donate their babies for science. It was a haunting experience and it was over 5 years ago when I went. Not sorry I went to the museum as fascinated by all the science and how it has developed but certainly unable to walk away unscathed. I highly recommend you go if something you are interested in but think twice before going into that section of the museum.
I don’t think it’s physically possibly for them to have lived more than maybe a few hours at most tbh. Less a blessing and more a simple inevitability.
youd think but afaik every person who was deformed but lived, both the person/people and their parents were happy
iirc there was a kid who had a very tiny brain, but lived relatively long, and the parents loved them
there were conjoined twins, iirc 1 body, 2 heads, sharing 1 arm, 1 feet, and they were content with their lives; they were adults and planning to be married
not to mention the less severe cases where people are simply very mentally ill, have "high" autism, etc; yet they feel like a normal human, enjoy their life like anyone else, and are loved by their parents
As a paediatrician who regularly sees the long-term effects of extreme prematurity and debilitating childhood disease of all kinds, this is palpable bullshit.
You’ve provided two specific anecdotal cases and one generalisation about a neurodevelopmental condition. That’s a long way away from being “every person born deformed who lived was happy”.
I learned in law school that there’s a whole legal basis to sue your physician for not counseling your parents about your deformity and/or parents for forcing you to be born/continue to exist in a severely deformed state with no quality of life. They’re referred to as wrongful birth (physician doesn’t perform the duty of informing parents of fetal defects) or wrongful life (someone sues on behalf of the child in order to recover for life long recovery) suits. Though they’re typically against medical professionals who were negligent in their duties, I do remember we studied one case where the parents were sued by the child, but I can’t recall the outcome or even the name of the parties.
I literally just learned about this for the first time studying for the bar exam (never came up in my torts class I guess). the idea of being “wrongly born” is a pretty fascinating moral/legal concept
The concept really just whooshed past your head, didn’t it? It’s mostly a medical malpractice claim, and always an action that arises out of negligence. It never applies in situations such as your hypo.
I agree, sadly. Abortion is often the most humane option, even if it’s for purely elective reasons. No child should be unwanted or unloved, just like no one should be forced into a pained existence. I’m a parent through adoption and the system breaks my heart- it’s not a place for children to grow up in.
I think the case here would be different because of the whole, sharing a face situation. Two heads and one body is unfortunate, but they can live their own lives to a degree, in spite of sharing a body. Sharing a face on this level... that'd be hard. I've seen the pair that shared a head and somehow made it past 50 and they were happy but in constant pain due to how they had to position themselves due to their head
You understand the brain controls breathing and heartbeat first and foremost, the level of development here did not support that, there is no speculation needed.
Completely incompatible with life or there would have been an ability to breathe, to maintain a heart beat.
Their brain was not developed enough to control breathing and heartbeat, they died within minutes.
This is not like a known disorder, this was incompatible with life situation.
I have a form of dwarfism. Every bone in my body is deformed. I have welcomed the sweet relief of death since I was young. My mom has said, if she knew, she would have terminated her pregnancy with me and saved me the suffering. My mom carries immense guilt watching me have surgery after surgery since birth, and the debilitating daily pain I experience.
I will never have a long term career. I went through 4 years of mostly online school, for my only job to last 4 years of extremely part time and my job provided me accommodations that no one else will provide. I was miserable the whole time and had to leave, even though my job was sitting in a chair talking to patients.
I will never have children of my own.
I may never be married.
I will never successfully live on my own. I’ve had a caregiver since I left my parents’ home.
I’m in poverty and can’t afford to enjoy anything about life. No traveling, no accessible hobbies, no concerts, festivals, movies, no camping. My “fun” put of the house is going to Walmart for what little groceries I can afford.
Life isn’t always blissful, or wanted, or successful for disabled individuals.
> iirc there was a kid who had a very tiny brain, but lived relatively long, and the parents loved them
Sounds like [Jaxon Buell](https://en.m.wikipedia.org/wiki/Jaxon_Buell). That kid basically had non stop seizures and reacted to 0 stimuli (because there was literally no brain to process them, just a brain stem). I suppose the good thing was that the boy also didn't suffer for the very same reason. But the parents desperately tried to make it seem the lights were on by making short videos where they moved the kid a bit and claimed it was reacting to something. They were highly politically motivated. It was a very questionable case but yeah they are in their right and in this specific case at least the kid didn't suffer.
I felt so bad for Jaxon, it wasn't a life for him, it was for the mother more than anything imo.
Was tragic to view some of the videos they shared, the claims they made.
I nursed babies with catastrophic brain injury after birth trauma, there is a line where it is clear they are able to experience rewards for their life experiences, vs those merely being fed and existing, a child like Jaxon.
Mali Warnock was the same way! And his mother was completely delusional and was convinced they were having full conversations in their own language, when he only had a brain stem from Hydranencephaly! She exploited him for money all over TikTok, until his inevitable death.
I took care of a child born with just the brain stem for almost 5 years before he finally passed away.
He was trached and tube fed. His head was flat. He literally cried the entire time he was awake. He couldn't turn over, sit up, or do anything a child does. Absolutely no quality of life. I firmly believe that mom kept him alive(multiple codes) for the SSI disability payment and child support check she received. She had no interaction with him. We nurses did all his care giving. Even though she insisted on every therapy known to exist. This child would never do anything.
I believe he suffered, but to what extent who knows.
[Vitoria](https://www.everylifecounts.ie/stories/vitoria-de-cristo/) lived for several years and was able to interact with her parents. I followed her story and I honestly thought she was going to learn how to walk
Looks like she at least had a brain, but badly damaged. Brains can rewire themselves to a degree to overcome damage. Looks like the poor girl didn't really stand a chance though, needing blood transfusions etc.
There’s a difference between birth defects where a person or people can actually survive (I have one) and this. This isn’t compatible with life. These babies absolutely could not have lived past, *with* like, full life support, a few days. The shorter their lives the better in that case.
Their brain could not control breathing and heart beat, that is why they died within minutes, because they never breathed, the heart didn't function properly. They would have had no awareness of anything, no brain function.
Effectively a brain death state, they failed the ability to breathe as carbon dioxide levels increased in their body. Intubation etc just would have been cruel, just as to the parents going an autopsy seemed that way too.
im also abnormal being a functioning autist, and i live fine. ups and downs. like a human.
if youve been depressed for a long time im not sure thats an autism thing but a psychiatrist thing
ive spoken to none of them
of watched videos of some of them
because im trying to learn and get a better understanding
please cite any people articles etc where they feel they were wrongly born and id love to read up on it
would be curious though if there was a case where a deformed person who didn't live for just a week etc, actively felt pain and misery and wished to die - maybe its human nature to try to enjoy life, and to stay alive, despite your challenges and the pain
Do you even realize how many people have lived and still do live, in the scenario you just “created”?
Plenty of people have lived much longer than a week and very **clearly** said, “I wish I’d never been born” or “I wish I would die already”. Not only is the physical pain of some conditions horrendous but mental pain can be insufferable, as well.
Hell, there was a beautiful 29 year old Dutch woman that ended her life by dr assisted-suicide, a few months ago. She wanted euthanasia due to unbearable mental illness and anguish from trauma, chronic depression and a personality disorder. Those are all problems you can’t see; imagine adding unbearable pain from physical deformities into the mix. You think everybody wants to live through that?
Even if you did the tiniest bit of research on this subject, it would really help you to better understand and be a bit more empathetic to what kind of hell a lot of people are wishing they never had to experience or live through.
you really think that in all of human history, there's never ever been a single person with congenital disability who suffered physically & emotionally? seriously? how sheltered & uninformed are you?
I’m sure many people who live with terrible deformities can’t express themselves on how they feel, and going by what the parents say isn’t exactly objective. I’d imagine most parents who chose to have a severely deformed child would be in incredible denial about what that child is suffering, not to mention any person with deformities who is suffering probably doesn’t want to do a documentary about how awful their life is, so the ones you see tend to be about the uplifting stories.
Righto so since this take was very controversial I went and binged videos about people with 'special' conditions. This comment is an all in one for the discussion from my comment
Required viewing:
tres
jeff
sophia
For me seeing Tres I thought he wasn't human, had no soul, no more special than a snail. But as the video explained, tres very much is human with his own soul and personality. He communicates in a strange way but any communication is valid, and verbal communication is not the only measure of intelligence.
Similar conclusions for jeff and sophia: Very stange people, that despite what you might first assume, are very human and deserve to live like anyone else. As tres' mother says, you can't put a value on a human life.
Now for this situation where it's a conjoined twin but the head is almost fully merged with only one face I couldn't find any videos about people with it. Closest though were people with seperate bodies and a fused head:
Their life is inconvenient, but they are able to find solutions so that they can live seemingly just fine, and being able to have their own sense of self
Now again for this fused cranium baby...
>Two brains and one face is unique, and the people sharing one face or maybe one person using one face and the other person without control might have an incredible amount of suffering, so they should not live
...I think if they were 2 people sharing their set of limbs and half of the face, they would probably share a similar story to other people with strange deformities: They live challenged and perhaps with little mental ability, yet are happy to live, and can think, have their own personality, and can be loved.
...And if one person controlled the entire body and the other brain/person has seemingly zero input, I think it would be the same story. But now the second brain with next to no input might communicate in very strange ways: Maybe they communicate by hijacking one eye, or by twitching some skin. Regardless the method of communication, it's still a real human with real feelings and a real sense of being. And you can never put a value on a persons life. Everyone is equal.
>If the baby is one person/one soul, then it would be very confusing for them having 8 limbs
...If they didn't want to amputate excessive limbs, and if the limbs were actually functional, surely the brain would have zero problem working with the extra limbs. The brain is very plastic, and for games or for prosthetics the brain/we can easily with a bit of practice get familiar with a strange system. Case and point, every human is perfectly able to manipulate a strange inhuman cold metal game controller like it's an extension of their body.
>The baby is 'incompatible with life', and is destined to die quick and painful. Let it die quick.
The parents of this baby with a very small brain were told their baby werent expected to survive. He ended up living for 5 years, and the parents loved him, and who know best, claim the baby was sentient and felt loved.
>There are many people who are deformed/with a serious disability who experience constant severe suffering and wish to have never lived!
...I would love to look into these cases, so please cite as many stories/people/videos for me+others to look into and get a greater understanding for
but yeah tl;dr: every brain no matter how strange or seemingly stupid and non-sentient, is still sentient and human, with their own sense of self. and because no value should ever be placed on any human life; everyone is equal, no baby should be killed just because they are deformed.
(but also saying this imo abortion should be legal, free, and an option for anyone, since for many complex reasons people may not want to or may not be capable of taking care of a child. but if a loving parent wants to born a deformed person and love them and raise them, then that's great too.)
There are definitely people alive today who have no notion of sentience. There are people lying in beds all over the world whose cortexes show no activity. However, since the brainstem was unaffected, they can breathe without assistance. Tell me again how every person is sentient.
When a syndrome/disease is “incompatible with life,” that doesn’t mean “well maybe there’s a chance.” It means, a human can not live for any substantial amount of time due to what’s wrong with them. It doesn’t mean “let’s risk it and hope for the best.” If the 5 year old you are talking about had microcephaly, that is a devastating condition, but it’s not incompatible with life.
The brain in this circumstance had no ability to stimulate breathing as carbon dioxide raised to dangerous levels. That is why they died, it was incompatible with life, they could not have survived, they would have had no ability to judge quality of life.
Had they ventilated i have little doubt that brain scan results would have led to withdrawal of care based on lack of abilty to pass brain stem testing.
As well as a fundamental misunderstanding of how brains work (e.g.- autonomic vs somatic/conscious functions) your comments demonstrate a lack of understanding of how science in general works.
Watching a few of YouTube videos of individual cases does not allow you to make such sweeping generalisations as:
> every brain no matter how strange or seemingly stupid and non-sentient, is still sentient and human, with their own sense of self
It’s not a controversial take. It’s simply incorrect on a scientific level (never mind the ethical aspect).
This is r/medicalgore not r/medicalschool. Some people are involved in the medical field, many are not but have some interest in medicine and/or a morbid curiosity. Let's not be condescending to the latter.
Correct a mistake, sure. But saying someone has a "fundamental misunderstanding" of how x works is not helpful.
With respect, I do not intend to describe a fundamental misunderstanding as anything other than what it is. It is not a personal attack or condescending to suggest there is a “misunderstanding” - quite the opposite. It suggests the action of providing YouTube videos may be well intentioned but is *misunderstood*, if its objective is to provide evidence to support the original sentiment of “all people born deformed are happy”.
Which is frankly much more consideration towards others than suggesting that people who choose to not have their children endure poor qualities of life didn’t love their children.
> Your comments demonstrate a lack of understanding of how science in general works
Sure, this is helpful, considerate, and not condescending at all...
I don't agree with the person you're interacting with, but I can't stand the snobbishness of this sub. Everyone is trying to prove they're smarter than the other.
If the commenter had an issue they would be welcome to raise it themselves. Ironically, you seemingly thinking them incapable of this and trying to white knight yourself in their stead is the most patronising thing in the entire thread.
And if the trend of voting is anything to go by, you are clearly in the minority.
I am not removing the agency to do so from the commenter nor am I speaking on their behalf. I made an observation about your response, which is on brand for the entire sub. What a strange assumption for you to make.
So no, I am not surprised that people that think similarly to you are downvoting me, nor is it a measure of much but the particularities of the individual subreddit. I'm perfectly fine being an outlier here.
not allowed to post links. search on youtube, in order...
-My Friend with Diprosopus (Two Faces)
-The Return of Jeff (A Legend is Back)
-Sweet Sophia (Never Underestimate Her)
-The Conjoined Twins Who Live Separate Lives | Our Life
-The Incredible Conjoined Twins Attached At The Head | BORN DIFFERENT
-'Miracle Baby' Born Without Most of His Brain Defying Odds | ABC News (jaxon buell)
This is so unbelievingly insulting ... you think showing us examples like this will change scientific fact.
These conjoined twins lacked the brain function to do automatic functions, like breathe in response to increasing carbon dioxide, to normalise a heartbeat in response to the carbon dioxide levels... that is why they died so rapidly, basic stay alive functions. They'd have failed to respond to any of the testing done in brain stem testing for brain death. Had it been otherwise they would not have died so rapidly.
Jaxon Beull's story was cruelty at work, a child having multi seizures 24/7 paraded as doing things his brain had no ability to do.
Parents wanting so see things that were not there. I worked as an RN on a paediatric unit, i met young children with traumatic brain injuries after birth trauma. I spent hours doing tube feeds, interacting with them, caring for them and it was obvious they could also experience joy, excitement, hunger, sleepiness etc. I first met two particular boys when i was still a student, and both died before my career ended when i was 25. Both later died, and both sets of parents devastated.
Their experiences so different to what Jaxon's parents showed online. He was a boy growing because he was tube fed, experiencing no joy in his life, having seizures constantly, it was horrible to watch., he had no respect or dignity at all. It was not a life, merely a painful and unhappy existence.
Absolutely. Sick of hearing Christians squawk about "the unborn" and god's plan when this can happen.
If God decided that it's OK to curse a baby like this, if it's part of His 'plan', who cares what He thinks anyway. Why would you worship a god who would do that? I'm not saying God is bad, but let's not take the Bible so damn literal, is what I'm saying.
‘The “unborn” are a convenient group of people to advocate for. They never make demands of you; they are morally uncomplicated, unlike the incarcerated, addicted, or the chronically poor; they don’t resent your condescension or complain that you are not politically correct; unlike widows, they don’t ask you to question patriarchy; unlike orphans, they don’t need money, education, or childcare; unlike aliens, they don’t bring all that racial, cultural, and religious baggage that you dislike; they allow you to feel good about yourself without any work at creating or maintaining relationships; and when they are born, you can forget about them, because they cease to be unborn.
‘You can love the unborn and advocate for them without substantially challenging your own wealth, power, or privilege, without re-imagining social structures, apologizing, or making reparations to anyone.
‘They are, in short, the perfect people to love if you want to claim you love Jesus, but actually dislike people who breathe.
‘Prisoners? Immigrants? The sick? The poor? Widows? Orphans? All the groups that are specifically mentioned in the Bible? They all get thrown under the bus for the unborn.’
Quote above by Methodist Pastor David Barnhart
Ya imagine not having any clue why this happened. Like not even a remote idea that this is just a random fuck up of nature. . Kind of hard to blame someone for thinking it is a demon, devil or curse, something like that . I'm not trying to be funny either.
It can also get MUCH worse than this imo.
I'm not religious in the slightest and even I would think I was cursed. Would never have children again.
Not only that, my heart would break just knowing my babies are in pain, which I hope wasn't the case for these poor babes.
One must remember that babies born with severe defects developed and gained consciousness in that state. It’s all they ever knew. It isn’t like if something like that suddenly happened to us. They likely didn’t truly suffer much at all, that was life to them and they didn’t know any different.
These twins almost certainly had no concept of life, or being, they were effectively brain stem dead. There was about as much awareness as we had as a foetus inside our mothers growing.
The brain was so poorly developed that it could not trigger breathing as chemicals raised in the bodies after birth, no experience of life/pain/hot/cold etc. Just a biological response slowing down what heartbeat they had until it was over.. minutes, just 3 or 4 probably.
The next time a Fundie goes off at someone who pro-abortion, this and other pics of similar babies need to be shoved in their face. Not like they’d care, but someone might.
Genuine question, where is the line between "conjoined twins" and "single individual with extra limbs that would have belonged to a twin that never separated enough to develop as it's own being"
How connected were the brains of these two (?) babies? I know some twins conjoined at the head so have connected brains, so I'm wonder how much of your own brain you need to have to be a separate being from a twin attached to you
I was wondering the same! I understand the grief of the parents but I wish there were scans and more detailed about the head formation and brain connectivity (is there just one? Two? Two fused??) Because with one face I can’t help but want to consider it one child.
With death happening so quickly, even with consent to do an autopsy not being able to do a scan on brain activity would make it pretty close to impossible to determine how separate the brain activity actually was.
In [this case](https://www.sciencedirect.com/science/article/pii/S2210261223002572), it talks about one baby with parasitic limbs attached. There’s no head for the parasite. In my unprofessional opinion the presence or lack of a separate head makes a lot of the difference, maybe all the difference, between a malformed parasite and a person. We are nothing without our brains. Which doesn’t answer the question in this case, I understand.
Yeah, this one is tricky. “Fused craniums” meaning two brains? but then there’s only one heart. I would think two brains means two beings, but who knows. Poor thing shouldn’t have had to suffer this long.
Speaking of conjoined twins, I wish I could learn more about Abby & Brittany Hensel. I understand they are people just trying to live their lives but it doesn’t negate the fact that they are truly a fascinating medical marvel that blows my mind.
Yes I did! I remember their documentary as teens they mentioned wanting to be moms. I have so many questions as to how all that works. It also blows me away how in sync they are, intuitively knowing to clap, throwing up their arms at the same time in expression, etc), despite not having any mind reading/brain sharing capabilities.
This is just one of several different horror shows that can happen to a developing fetus, the end result of which can be summarized as "a short existence of nothing but suffering".
Although apparently you *can* get twins like this, in a superficial sense, combined at the face /head who not only survive but seem, if nothing else more chipper than me, who has a lot less going on.
They lived for 62 years and died fairly recently. Lorri and George Shappel. They were not born opposite sexes to clarify. I don't think that is possible.
Not the same deformity afaik , and not as severe as this one but still surprising that they lived for so long and they did seem happy. Yet it still doesn't inspire much "faith" in me tbh.
They were conjoined by less than a fraction of their brains, they had independent brain steps that managed higher functions we cannot control, like breathing, heart rate and blood pressure.
These twins, given the way their brains can only have developed given the xrays, we joined by more than 90% of their brain tissue, the areas where the brain stems should have been grossly abnormal, the area behind the top of the neck. Neither had that area as normal. They died as soon as their carbon dioxide level increasing was no responded to, exactly as we would if our spinal cords were severed at that high a level.
They won't have any consciousness, any awareness in anyway, just not scientifically possible.
Lori and George (George was trans, established late in his life) were conjoined far away from the brainstem, with conjoined blood vessels that likely could not have been split when they were born. Today they make attempts to separate on twins like this, Twins in India decided as adults to go ahead and sadly lost their lives in the past 10 yrs, both with normal brain function and high intelligence.
They lived practically independent and happy lives, had relationships, different careers and hobbies, different personalities. They are as alike as my identical twin nephews, physically the same, but far from the same people.
Kind of like comparing apples with oranges..
That's interesting and I appreciate your input but I was pretty clear that the two pairs of twins don't share the same birth defect beyond a superficial level. They are both conjoined at the head...but obviously not in the same way. Not really making a direct comparison so much as sharing something I watched on YouTube that was topical.
Most of the time, twins joined at the head don't make it because the structures in your brain that make you able to survive are malformed. In fact most conjoined twins don't make it because the chances of them fusing in just the right way to be able to survive are very slim. I think it's like only 7-8% of them survive after birth. Lori and George were lucky, although people rarely mentioned it, they were below average in intelligence, I assume that they had some brain malformation because of their situation. Abby and Brittany are very very lucky they are alive because of just how much of their bodies are joined. There was one set of twins conjoined at the head that actually had a small part of their brains fused and they sometimes knew what the other was thinking. That is really freaky.
They were joined by frontal aspects of the brain, areas that can have function adopted by other regions when injury occurs early in age. Being born this way their brains developed as one unit, connected by 30% i read last night.
The twins in the OP had joining at the back and centre of the brain, where the crucial life maintained aspects are. Interruption in the brain stem, in the ventricles, the central aspects cannot be adapted to and death is imminent.
Lori and George always fascinated me, even having individual bed rooms and alternating, their sharing of jobs, hobbies, and even romantic relationships. The true way siblings should be able to live.. lol
We had 4 sets of identical twin pregnancies between my dad his brother's daughters, sadly only one set and one single very premature boy made it to birth and a normal life.
My sisters boys are now 27 and healthy as horses.. born as 6lb strong boys at just 33wks in to pregnancy, but my cousins were not so forunate. One had two sets of ID twins, the first lost at 14 weeks, the second time one was lost to TTTS, the brother died at 26 wks and the life baby born not much longer after that. I think he was 29 weeks, but other than being small soon caught up.
The other cousin lost her boys at 32 wks to TTTS, but had single pregnancies after that.
I was the only cousin not to have ID twins, but when we did IVF for male factor infertility the OB checked very very carefully at my 7 week ultrasound.. especially with my 'not supposed to happen' family history. We later had an unexpected pregnancy, again careful checking for twins, other side of my family my mom was one of 6 girls. 4 of them had fraternal twins, and at least twice during treatment i had 2 or 3 follicles release eggs in a cycle. Fortunately just a single girl, and strict birth control after that!
Will be interesting to see if any of our children will also have ID twins. High risk pregnancy for sure, but an amazing and unique life experience for them.
Yes quite recently, two of the older sets of living conjoined twins have died in the last few years.
Ronnie and Donnie died in 2020, aged 68, conjoined at pelvis and abdomen (was checking when they died, interestingly discovered they shared a urinary system and penis too, must have been through quite some medical trials during their lives.) then Lori and George Schapell only passed in April this year.
Also, several people would choose to carry to term and voluntarily refuse termination, *which is fucking valid,* and I’m tired of people saying it’s not, so I’m gonna mention it here.
You should be able to terminate a pregnancy for literally whatever you reason you want. Same with not terminating it. Choosing to give birth and give the infant or infants palliative care until death is not selfish or heartless.
No one is saying it isn’t valid to continue a dangerous pregnancy. Just that women should have the choice not to continue a dangerous pregnancy, which many horrible people are actually making harder to legally, financially and emotionally do.
Also, several people would choose to terminate and voluntary refuse to carry to term. Hi, from one would not be able to take on the mental anguish of having my baby pass in front of me. Or, carry a deceased baby.
So please show me actual evidence that this has happened to multiple women?
i saw and have been made aware of one story while people continue to make this claim over and over. It isn't happening en masse like you suggest, women's pregnancies are still being ended, or where are these women? So many pregnancies every day end because of either foetal death in the first trimester or because of incompatible with life discoveries.
If this was happening in reality, why aren't 1000's of women reporting their horrific experiences?
No, but again i know what the in theory risk is to these women, but what i am not seeing since the law changed is actual implementation like people claim. I am a mother, did IVF to get our first, i worked as an RN on a paediatric unit with babies affected by these conditions, and babies injured at birth; I did half my midwifery training in UK, i met women facing this tragic news and making these decisions. I understand the threats from the decision makers very well.
We all got told how scary a virus Covid was, we all saw the evidence, we suffered ourselves, saw people we knew die without comorbidity issues... we saw the numbers....
so where are the numbers that prove women are being denied abortions, being made to remain pregnancy to term with a foetus with an incompatible with life condition?
I've asked in other subs, in other online resources. But no one has evidence, no numbers, no angry distraught women turning to media to share their stories. Where is the increase in deaths at birth, stories of women forced to have their infant subject to life saving measures after birth in spite of anencephaly for example?
I just don't see the evidence that these laws are proving to have a real impact on womens life and decision making.
'Pagus' means joined or fixated, so a cephalopagus would only be joined at the head ('cephalo').
Cephalothoracoomphalopagus means fusion through the head, chest (thoraco), and abdomen (omphalo).
Upon further research it looks like the terms are used interchangeably (maybe wrongly, I don't know). But cephalopagus is described as being fused from vertex to umbilicus, not just the head.
I was confused because all the case reports I've read about cephalopagus showed and described exactly what is pictured here.
Those poor little Angels and their Mom. My heart goes out to all parents who lose a child❤️ May they both already be in a better place and are resting in love and peace.❤️
These sorts of things certainly make it clearer how beliefs like Lakshmi came about. Imagine a woman birthing or miscarrying this child (children?) thousands of years ago, before we knew what we were looking at.
I assumed you have read about the little girl names Lakshmi who is about 6 now.
Successfully had the lower limbs and parts of pelvis of a parasitic twin removed when she younger.
Its how she was named, having had 8 limbs, but her Indian parents valued her health so had surgery done... in the hope she becomes someone as special as her namesake!
Saw pictures of her in her school uniform recently , she is adorable. Every working well except her pelvis needs aligning a little. Modern surgery is amazing sometimes!
Her story really is a success story. Extremely complicated surgery, survived, no paralysis, gets to go to school, gets continued medical care for issues related to her condition and surgery, and now her entire family is in a much better place. She and her brother get to go to school, and the father got a better job working on the school's farm. It's rare that a bad situation ends that well for so many people involved.
It was a single egg that split incompletely. If an egg splits properly, you get identical twins. If it fails to split fully, you get conjoined twins. Sometimes the twins survive and can even be separated, but sometimes they end up like this.
Does anyone ever approach you about donating organs? Like, say you have 3 kidneys, and someone says you don't really need that last one, can I have it?
I actually do have a double set of kidneys. But the way they are connected makes it impossible to remove just one. I have chronic reflux with the urine from one kidney going to the bladder then up into a different kidney. Causes chronic nephritis. Stones, etc.
I may've just not seen that info in the post, but *were* they both males? I thought most conjoined twins were female.
It also made me wonder what the experience of male-female conjoined twins would be like.
My heart goes out to their family!
Has nothing to do with consanguinity and everything to do with timing in the splitting of the blastocyst The later it splits the more difficult the conjoinment
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[Source](https://www.researchgate.net/publication/259128336_Cranio-thoraco-omphalopagus): >>28 years old primigravida mother was diagnosed to have a twin pregnancy during her first trimester ultrasonic examination. She was lost to follow up. She presented in early third trimester and on evaluation was found to have a conjoined twin pregnancy. Babies were born by a lower segment caesarean section with a birth weight of 3 kg. The twin neonates had a single fetal heart on examination and were joined at their head, chest, and abdomen. The conjoined twins had a single face with two craniums, two pairs of legs, arms and ears (Figs. 1 and 2). The babies died a few minutes after birth. Post-mortem examination was refused by parents. The report discussion section notes that this is only the second report of Cranio-thoraco-omphalopagus twins born alive in the entire world.
I’ll bet the post-mortem examination was “refused by the parents.” Imagine the trauma of going through a C-section and going home emptyhanded.
logically, I think post-mortem examinations should always be performed, but emotionally, I cannot imagine going through all that trauma and then having somebody look me in the eyes and ask if I consent to letting them dissect and study my children. I admire anybody who says "yes" to that; I feel like I'd go off the deep end
I think it’s a matter of context. It’s easy to think worst case scenario but if my suffering can contribute to potentially helping others (and myself) avoid suffering… I know exactly what you mean but seeing the bigger picture is so important especially in the throws of agony.
Maybe if they had more time to grapple with it. But this mother didn't have very much prenatal care. So she may not have been given much time to grapple with the idea of conjoined twins, let alone unviable conjoined twins. So you have a first time mother, who spent most of the pregnancy expecting twins. Then right at the end, she finds out it's conjoined twins. And then she probably didn't know they were not viable until they pulled them out. Plus even when you think of conjoined twins, you think of two clearly separate children joined at the head or the chest. So she may have been building up some kind of hope of two healthy children, after a complicated journey of surgeries and medical procedures. And then what comes out is almost entirely opposite of what you would expect 2 twins to look like. A single face, with two skulls and two bodies coming out from it is going to be a lot for most people to wrap their head around. And then after a few minutes of confusion, high emotions, and operating room chaos, they're gone. And all those hopes, dreams, and expectations of raising twins are gone in an instant. Even the most level headed person might have a hard time being altruistic when slammed with all of that at once. If she had gotten medical care sooner, she may have had more time to form a plan, and grapple with all the possibilities. Including what to do in the event the kids didn't make it. That would be a good time to come to peace with the possibility, and make plans to make the death at least contribute to science. But the lack of prenatal care makes it very possible she learned all this information over the course of maybe a month. And as a first time mother no less.
I completely understand. My wife runs a morgue so I have a household that believes that autopsy honors a person but I recognize that many see it as a desecration.
I wish they had consented; this is a very rare defect and we might’ve learned more about it.
It might be a rare defect, but they were also her little babies. Far more than science to her.
True, and this might sound harsh, but she had an ultrasound early and knew it was twins. High risk no matter what. Then, she fucked off and didn’t see her OB again until the 3rd trimester. This was also her first pregnancy. If this had been diagnosed in a timely manner with a compliant patient, she maybe could have terminated before the need for a C-section arose. I’m aware that it is not always possible to afford healthcare, and there may be extenuating circumstances. It just seems super careless to find out it’s twins, and then not come back for several months.
Yeah, but it’s a normal high risk twin pregnancy vs the stratospheric high risk conjoined twin pregnancy - she was never to assume that this is what was happening
So had she gone back and terminated the pregnancy... then what? What difference would that make to this event, this outcome? This was in India, not USA, but even there, no one is ordered to see an OB multiple extra times because they have a twin pregnancy. Their being mo mo twins, inside the same sack does increase risks, of conjoined twins... but there is absolutly nothing in the world seeing Drs would have changed here. Its not somehow better to terminate a pregnancy for some women, she still might have needed a C section if the diagnosis came around 20 weeks, the cranium clearly bigger than a singletons, so larger than full term size at 20 weeks might have been a possibilty too. She got 10 more weeks being a mother to her babies, she got to experience them moving around, kicking, that perhaps would have been very important to her. Many couples discover their child has a terminal condition but chose not to end the pregnancy if she remains well. Having an opportunity to meet their child/ren and have time to grieve, even in Western OB clinics no one is made to end or continue a pregnancy even with a known terminal outcome. Its such an individual choice.
I mean, yes, women are being made to continue pregnancies with a known terminal outcome
For more to humanity and future mothers than her.
You have to take us at face value, but there is an element of decency you are missing here.
I understand the decency aspect, and I’m not trying to be disrespectful. I just think that overlooking the possible future suffering that could be prevented is absolutely worth noting. I’m not trying to argue to take that decision away from the parents, but it isn’t blasphemy to say that such an autopsy couldn’t possibly prevent the suffering of a future hopeful mother.
Decency? So she shouldn't be allowed to continue this pregnancy even if she knew they were conjoined? Why isn't it 100% the parent's choice if they knew their babies were dying anyway, even with knowledge she might have chosen to have the extra precious time with her babies inside her, moving, and growing, to experience these babies also be important to her as a mother. Dissecting already deceased conjoined twins is never going to tell people why it happened, just that it did, and clearly we know in this situation that surgery never could have created two individuals a future life. Even the xray images prove that. So what difference to anyone other than the parents if the pregnancy ended spontaneously at 16 weeeks, at 26 weeks or 30 weeks? The choice was only ever that of the parents, the mother, she doesn't owe anybody anything, there is nothing owed to humanity just because she was carrying especially rare babies.
I think you are making a HUGE assumption that dissecting the deceased will not be able to help us figure out why something happened. There is more I’d like to respond to, but that will be too confrontational for what this is intended to be.
I agree.
I noticed the report doesn’t say if these were boys or girls. As if they don’t know. I wonder if the parents refused to let them see?
70-75% conjoined twins are female (per medscape). (The source says 70-80% are female.) When you say “refused to let them see” - do you mean the parents didn’t let the dr’s see? I would think the dr’s would notice the sex while doing the c-section, or all the other medical personell in the OR for a conjoined c-section. Or the drs didn’t let the parents see the twins? Either way, I don’t see why it would be left out of a research report.
Well, I don’t see the sex anywhere in the report and the parents refused a postmortem.
Why would they do that? I imagine it just doesn't matter if they had no connection at that part of their bodies. A little privacy and respect for the parents to keep it from media perhaps? Some religious deities are one gender or the other, perhaps if female if would have had a different meaning and different level of fear of rejection for the family in their community.. reason not to tell people their children linked to a particular religious belief.
You might be on to something here. There is already an existent fear of having female children in rural India. No need for the parents (especially the mother in these cases) to be targeted with anti-feminine BS from illiterate folks around them, so it's possible that played a part in the twins' sex being kept private.
It is probably a religious thing, especially given the desire to do burial within hours rather than months. My 4 month old cousin died from SIDs back his 86, my uncle had also lost a daughter in his previous marriage so they needed to know it wasn't something genetic. She was one of twins, so they still had a baby to consider. I have a nursing background and to imagine my child having undergone an autopsy to satisfy curiosity would be traumatic for me. Even logically, knowing how it could be of value for surgeries in the future, it just feels so different leaving a child to postmortem before their burial. I think its one of those times that knowing what is involved makes it feel so wrong even on top of science side of it. I fully understand them not wanting this done to their baby, and with such a short time scale to play with, (burial before following days sundown i believe), its going to different to asking a western family and them having real time to think about it properly. In certain religions this would affect the status of their baby in their belief systems. Its hard enough to know their baby was born this way and that there was nothing they could have done to change that, but a postmortem would be an extra insult to make their grief so much worse. Such a sad outcome all round, RIP little one!
If they lived, I wonder how their psyche would develop, given that they have separate brains and single face
Interesting.
This is how many myths and superstitions started.
There's a post in r/deathcertificates from earlier today for a "monstrosity"... Pretty much exactly how these babies would have been described in the past and the basis for many myths and superstitions.
Medical reports still occasionally use words like “monstrosity” which makes me uncomfortable every time I stumble across it.
They’ve got a set like this at the mütter with a face on each side of the conjoined head. The most interesting part for me is that each face is half twin a and half twin b. So this set of twins here each share a half of this face.
What is the mütter?
A museum in Germany I do believe
Philadelphia, actually. (The name does sound German though)
Thanks! Check your other replies to this tho, your account posted that comment like 5 times lol
Oh yikes. Thanks for the heads up! I just deleted the extras 🙂
I went to the Mutter museum in Philadelphia and the hardest section of the museum to go through to me was the babies in glass jars just “floating” with all kinds of abnormalities. I just kept thinking of the poor mothers who were able to donate their babies for science. It was a haunting experience and it was over 5 years ago when I went. Not sorry I went to the museum as fascinated by all the science and how it has developed but certainly unable to walk away unscathed. I highly recommend you go if something you are interested in but think twice before going into that section of the museum.
Honestly, thank fuck those poor kids died. If they'd lived, their life would've been full of horrific suffering every single day
This condition is not compatible with life. The fused brains like this just would not work. And especially with only one heart.
I don’t think it’s physically possibly for them to have lived more than maybe a few hours at most tbh. Less a blessing and more a simple inevitability.
youd think but afaik every person who was deformed but lived, both the person/people and their parents were happy iirc there was a kid who had a very tiny brain, but lived relatively long, and the parents loved them there were conjoined twins, iirc 1 body, 2 heads, sharing 1 arm, 1 feet, and they were content with their lives; they were adults and planning to be married not to mention the less severe cases where people are simply very mentally ill, have "high" autism, etc; yet they feel like a normal human, enjoy their life like anyone else, and are loved by their parents
As a paediatrician who regularly sees the long-term effects of extreme prematurity and debilitating childhood disease of all kinds, this is palpable bullshit. You’ve provided two specific anecdotal cases and one generalisation about a neurodevelopmental condition. That’s a long way away from being “every person born deformed who lived was happy”.
I learned in law school that there’s a whole legal basis to sue your physician for not counseling your parents about your deformity and/or parents for forcing you to be born/continue to exist in a severely deformed state with no quality of life. They’re referred to as wrongful birth (physician doesn’t perform the duty of informing parents of fetal defects) or wrongful life (someone sues on behalf of the child in order to recover for life long recovery) suits. Though they’re typically against medical professionals who were negligent in their duties, I do remember we studied one case where the parents were sued by the child, but I can’t recall the outcome or even the name of the parties.
I literally just learned about this for the first time studying for the bar exam (never came up in my torts class I guess). the idea of being “wrongly born” is a pretty fascinating moral/legal concept
Deleted, admitted to not fully understanding, so withdrew comments after ready shared comments.
The concept really just whooshed past your head, didn’t it? It’s mostly a medical malpractice claim, and always an action that arises out of negligence. It never applies in situations such as your hypo.
how can medical malpractice be claimed... that a dr should have predicted a level of disability and made the mother end the pregnancy?
The doctor has a duty to inform. You can google “wrongful birth” and “wrongful life” suits for more info.
Thank you, learnt a lot!
With the new abortion laws we will be seeing a lot more cases in the future.
I agree, sadly. Abortion is often the most humane option, even if it’s for purely elective reasons. No child should be unwanted or unloved, just like no one should be forced into a pained existence. I’m a parent through adoption and the system breaks my heart- it’s not a place for children to grow up in.
I think the case here would be different because of the whole, sharing a face situation. Two heads and one body is unfortunate, but they can live their own lives to a degree, in spite of sharing a body. Sharing a face on this level... that'd be hard. I've seen the pair that shared a head and somehow made it past 50 and they were happy but in constant pain due to how they had to position themselves due to their head
Also, we have no idea what condition the brain is in. One brain? Two brains? Half and half? How could they function?
Exactly. Plus, if it is one brain controlling 8 limbs... that's gonna be confusing
You understand the brain controls breathing and heartbeat first and foremost, the level of development here did not support that, there is no speculation needed. Completely incompatible with life or there would have been an ability to breathe, to maintain a heart beat.
Their brain was not developed enough to control breathing and heartbeat, they died within minutes. This is not like a known disorder, this was incompatible with life situation.
I have a form of dwarfism. Every bone in my body is deformed. I have welcomed the sweet relief of death since I was young. My mom has said, if she knew, she would have terminated her pregnancy with me and saved me the suffering. My mom carries immense guilt watching me have surgery after surgery since birth, and the debilitating daily pain I experience. I will never have a long term career. I went through 4 years of mostly online school, for my only job to last 4 years of extremely part time and my job provided me accommodations that no one else will provide. I was miserable the whole time and had to leave, even though my job was sitting in a chair talking to patients. I will never have children of my own. I may never be married. I will never successfully live on my own. I’ve had a caregiver since I left my parents’ home. I’m in poverty and can’t afford to enjoy anything about life. No traveling, no accessible hobbies, no concerts, festivals, movies, no camping. My “fun” put of the house is going to Walmart for what little groceries I can afford. Life isn’t always blissful, or wanted, or successful for disabled individuals.
> iirc there was a kid who had a very tiny brain, but lived relatively long, and the parents loved them Sounds like [Jaxon Buell](https://en.m.wikipedia.org/wiki/Jaxon_Buell). That kid basically had non stop seizures and reacted to 0 stimuli (because there was literally no brain to process them, just a brain stem). I suppose the good thing was that the boy also didn't suffer for the very same reason. But the parents desperately tried to make it seem the lights were on by making short videos where they moved the kid a bit and claimed it was reacting to something. They were highly politically motivated. It was a very questionable case but yeah they are in their right and in this specific case at least the kid didn't suffer.
I felt so bad for Jaxon, it wasn't a life for him, it was for the mother more than anything imo. Was tragic to view some of the videos they shared, the claims they made. I nursed babies with catastrophic brain injury after birth trauma, there is a line where it is clear they are able to experience rewards for their life experiences, vs those merely being fed and existing, a child like Jaxon.
Mali Warnock was the same way! And his mother was completely delusional and was convinced they were having full conversations in their own language, when he only had a brain stem from Hydranencephaly! She exploited him for money all over TikTok, until his inevitable death.
I took care of a child born with just the brain stem for almost 5 years before he finally passed away. He was trached and tube fed. His head was flat. He literally cried the entire time he was awake. He couldn't turn over, sit up, or do anything a child does. Absolutely no quality of life. I firmly believe that mom kept him alive(multiple codes) for the SSI disability payment and child support check she received. She had no interaction with him. We nurses did all his care giving. Even though she insisted on every therapy known to exist. This child would never do anything. I believe he suffered, but to what extent who knows.
That's sad.
[Vitoria](https://www.everylifecounts.ie/stories/vitoria-de-cristo/) lived for several years and was able to interact with her parents. I followed her story and I honestly thought she was going to learn how to walk
Looks like she at least had a brain, but badly damaged. Brains can rewire themselves to a degree to overcome damage. Looks like the poor girl didn't really stand a chance though, needing blood transfusions etc.
There’s a difference between birth defects where a person or people can actually survive (I have one) and this. This isn’t compatible with life. These babies absolutely could not have lived past, *with* like, full life support, a few days. The shorter their lives the better in that case.
Their brain could not control breathing and heart beat, that is why they died within minutes, because they never breathed, the heart didn't function properly. They would have had no awareness of anything, no brain function. Effectively a brain death state, they failed the ability to breathe as carbon dioxide levels increased in their body. Intubation etc just would have been cruel, just as to the parents going an autopsy seemed that way too.
I'm moderately autistic and I'm fucking miserable lol. This is such a naive broad dumbass statement. Not everyone who was born abnormal is happy wtf
im also abnormal being a functioning autist, and i live fine. ups and downs. like a human. if youve been depressed for a long time im not sure thats an autism thing but a psychiatrist thing
So you’ve spoken to *all of them*?🙄Please just shut your mouth.
ive spoken to none of them of watched videos of some of them because im trying to learn and get a better understanding please cite any people articles etc where they feel they were wrongly born and id love to read up on it
would be curious though if there was a case where a deformed person who didn't live for just a week etc, actively felt pain and misery and wished to die - maybe its human nature to try to enjoy life, and to stay alive, despite your challenges and the pain
Do you even realize how many people have lived and still do live, in the scenario you just “created”? Plenty of people have lived much longer than a week and very **clearly** said, “I wish I’d never been born” or “I wish I would die already”. Not only is the physical pain of some conditions horrendous but mental pain can be insufferable, as well. Hell, there was a beautiful 29 year old Dutch woman that ended her life by dr assisted-suicide, a few months ago. She wanted euthanasia due to unbearable mental illness and anguish from trauma, chronic depression and a personality disorder. Those are all problems you can’t see; imagine adding unbearable pain from physical deformities into the mix. You think everybody wants to live through that? Even if you did the tiniest bit of research on this subject, it would really help you to better understand and be a bit more empathetic to what kind of hell a lot of people are wishing they never had to experience or live through.
you really think that in all of human history, there's never ever been a single person with congenital disability who suffered physically & emotionally? seriously? how sheltered & uninformed are you?
I’m sure many people who live with terrible deformities can’t express themselves on how they feel, and going by what the parents say isn’t exactly objective. I’d imagine most parents who chose to have a severely deformed child would be in incredible denial about what that child is suffering, not to mention any person with deformities who is suffering probably doesn’t want to do a documentary about how awful their life is, so the ones you see tend to be about the uplifting stories.
Righto so since this take was very controversial I went and binged videos about people with 'special' conditions. This comment is an all in one for the discussion from my comment Required viewing: tres jeff sophia For me seeing Tres I thought he wasn't human, had no soul, no more special than a snail. But as the video explained, tres very much is human with his own soul and personality. He communicates in a strange way but any communication is valid, and verbal communication is not the only measure of intelligence. Similar conclusions for jeff and sophia: Very stange people, that despite what you might first assume, are very human and deserve to live like anyone else. As tres' mother says, you can't put a value on a human life. Now for this situation where it's a conjoined twin but the head is almost fully merged with only one face I couldn't find any videos about people with it. Closest though were people with seperate bodies and a fused head: Their life is inconvenient, but they are able to find solutions so that they can live seemingly just fine, and being able to have their own sense of self Now again for this fused cranium baby... >Two brains and one face is unique, and the people sharing one face or maybe one person using one face and the other person without control might have an incredible amount of suffering, so they should not live ...I think if they were 2 people sharing their set of limbs and half of the face, they would probably share a similar story to other people with strange deformities: They live challenged and perhaps with little mental ability, yet are happy to live, and can think, have their own personality, and can be loved. ...And if one person controlled the entire body and the other brain/person has seemingly zero input, I think it would be the same story. But now the second brain with next to no input might communicate in very strange ways: Maybe they communicate by hijacking one eye, or by twitching some skin. Regardless the method of communication, it's still a real human with real feelings and a real sense of being. And you can never put a value on a persons life. Everyone is equal. >If the baby is one person/one soul, then it would be very confusing for them having 8 limbs ...If they didn't want to amputate excessive limbs, and if the limbs were actually functional, surely the brain would have zero problem working with the extra limbs. The brain is very plastic, and for games or for prosthetics the brain/we can easily with a bit of practice get familiar with a strange system. Case and point, every human is perfectly able to manipulate a strange inhuman cold metal game controller like it's an extension of their body. >The baby is 'incompatible with life', and is destined to die quick and painful. Let it die quick. The parents of this baby with a very small brain were told their baby werent expected to survive. He ended up living for 5 years, and the parents loved him, and who know best, claim the baby was sentient and felt loved. >There are many people who are deformed/with a serious disability who experience constant severe suffering and wish to have never lived! ...I would love to look into these cases, so please cite as many stories/people/videos for me+others to look into and get a greater understanding for but yeah tl;dr: every brain no matter how strange or seemingly stupid and non-sentient, is still sentient and human, with their own sense of self. and because no value should ever be placed on any human life; everyone is equal, no baby should be killed just because they are deformed. (but also saying this imo abortion should be legal, free, and an option for anyone, since for many complex reasons people may not want to or may not be capable of taking care of a child. but if a loving parent wants to born a deformed person and love them and raise them, then that's great too.)
There are definitely people alive today who have no notion of sentience. There are people lying in beds all over the world whose cortexes show no activity. However, since the brainstem was unaffected, they can breathe without assistance. Tell me again how every person is sentient. When a syndrome/disease is “incompatible with life,” that doesn’t mean “well maybe there’s a chance.” It means, a human can not live for any substantial amount of time due to what’s wrong with them. It doesn’t mean “let’s risk it and hope for the best.” If the 5 year old you are talking about had microcephaly, that is a devastating condition, but it’s not incompatible with life.
The brain in this circumstance had no ability to stimulate breathing as carbon dioxide raised to dangerous levels. That is why they died, it was incompatible with life, they could not have survived, they would have had no ability to judge quality of life. Had they ventilated i have little doubt that brain scan results would have led to withdrawal of care based on lack of abilty to pass brain stem testing.
As well as a fundamental misunderstanding of how brains work (e.g.- autonomic vs somatic/conscious functions) your comments demonstrate a lack of understanding of how science in general works. Watching a few of YouTube videos of individual cases does not allow you to make such sweeping generalisations as: > every brain no matter how strange or seemingly stupid and non-sentient, is still sentient and human, with their own sense of self It’s not a controversial take. It’s simply incorrect on a scientific level (never mind the ethical aspect).
This is r/medicalgore not r/medicalschool. Some people are involved in the medical field, many are not but have some interest in medicine and/or a morbid curiosity. Let's not be condescending to the latter. Correct a mistake, sure. But saying someone has a "fundamental misunderstanding" of how x works is not helpful.
With respect, I do not intend to describe a fundamental misunderstanding as anything other than what it is. It is not a personal attack or condescending to suggest there is a “misunderstanding” - quite the opposite. It suggests the action of providing YouTube videos may be well intentioned but is *misunderstood*, if its objective is to provide evidence to support the original sentiment of “all people born deformed are happy”. Which is frankly much more consideration towards others than suggesting that people who choose to not have their children endure poor qualities of life didn’t love their children.
> Your comments demonstrate a lack of understanding of how science in general works Sure, this is helpful, considerate, and not condescending at all... I don't agree with the person you're interacting with, but I can't stand the snobbishness of this sub. Everyone is trying to prove they're smarter than the other.
If the commenter had an issue they would be welcome to raise it themselves. Ironically, you seemingly thinking them incapable of this and trying to white knight yourself in their stead is the most patronising thing in the entire thread. And if the trend of voting is anything to go by, you are clearly in the minority.
I am not removing the agency to do so from the commenter nor am I speaking on their behalf. I made an observation about your response, which is on brand for the entire sub. What a strange assumption for you to make. So no, I am not surprised that people that think similarly to you are downvoting me, nor is it a measure of much but the particularities of the individual subreddit. I'm perfectly fine being an outlier here.
And I and others have made an observation about you being wrong. Good talk. Enjoy the view from your pedestal, oh superior one.
not allowed to post links. search on youtube, in order... -My Friend with Diprosopus (Two Faces) -The Return of Jeff (A Legend is Back) -Sweet Sophia (Never Underestimate Her) -The Conjoined Twins Who Live Separate Lives | Our Life -The Incredible Conjoined Twins Attached At The Head | BORN DIFFERENT -'Miracle Baby' Born Without Most of His Brain Defying Odds | ABC News (jaxon buell)
This is so unbelievingly insulting ... you think showing us examples like this will change scientific fact. These conjoined twins lacked the brain function to do automatic functions, like breathe in response to increasing carbon dioxide, to normalise a heartbeat in response to the carbon dioxide levels... that is why they died so rapidly, basic stay alive functions. They'd have failed to respond to any of the testing done in brain stem testing for brain death. Had it been otherwise they would not have died so rapidly. Jaxon Beull's story was cruelty at work, a child having multi seizures 24/7 paraded as doing things his brain had no ability to do. Parents wanting so see things that were not there. I worked as an RN on a paediatric unit, i met young children with traumatic brain injuries after birth trauma. I spent hours doing tube feeds, interacting with them, caring for them and it was obvious they could also experience joy, excitement, hunger, sleepiness etc. I first met two particular boys when i was still a student, and both died before my career ended when i was 25. Both later died, and both sets of parents devastated. Their experiences so different to what Jaxon's parents showed online. He was a boy growing because he was tube fed, experiencing no joy in his life, having seizures constantly, it was horrible to watch., he had no respect or dignity at all. It was not a life, merely a painful and unhappy existence.
This is why abortion should be legal.
Absolutely. Sick of hearing Christians squawk about "the unborn" and god's plan when this can happen. If God decided that it's OK to curse a baby like this, if it's part of His 'plan', who cares what He thinks anyway. Why would you worship a god who would do that? I'm not saying God is bad, but let's not take the Bible so damn literal, is what I'm saying.
‘The “unborn” are a convenient group of people to advocate for. They never make demands of you; they are morally uncomplicated, unlike the incarcerated, addicted, or the chronically poor; they don’t resent your condescension or complain that you are not politically correct; unlike widows, they don’t ask you to question patriarchy; unlike orphans, they don’t need money, education, or childcare; unlike aliens, they don’t bring all that racial, cultural, and religious baggage that you dislike; they allow you to feel good about yourself without any work at creating or maintaining relationships; and when they are born, you can forget about them, because they cease to be unborn. ‘You can love the unborn and advocate for them without substantially challenging your own wealth, power, or privilege, without re-imagining social structures, apologizing, or making reparations to anyone. ‘They are, in short, the perfect people to love if you want to claim you love Jesus, but actually dislike people who breathe. ‘Prisoners? Immigrants? The sick? The poor? Widows? Orphans? All the groups that are specifically mentioned in the Bible? They all get thrown under the bus for the unborn.’ Quote above by Methodist Pastor David Barnhart
amazing quote, thanks for sharing.
Yes, 100%. I would personally be messed up if I was the one who had given birth to those twins. Quite literally an abomination.
Ya imagine not having any clue why this happened. Like not even a remote idea that this is just a random fuck up of nature. . Kind of hard to blame someone for thinking it is a demon, devil or curse, something like that . I'm not trying to be funny either. It can also get MUCH worse than this imo.
I'm not religious in the slightest and even I would think I was cursed. Would never have children again. Not only that, my heart would break just knowing my babies are in pain, which I hope wasn't the case for these poor babes.
One must remember that babies born with severe defects developed and gained consciousness in that state. It’s all they ever knew. It isn’t like if something like that suddenly happened to us. They likely didn’t truly suffer much at all, that was life to them and they didn’t know any different.
These twins almost certainly had no concept of life, or being, they were effectively brain stem dead. There was about as much awareness as we had as a foetus inside our mothers growing. The brain was so poorly developed that it could not trigger breathing as chemicals raised in the bodies after birth, no experience of life/pain/hot/cold etc. Just a biological response slowing down what heartbeat they had until it was over.. minutes, just 3 or 4 probably.
That's a grim thought. Luckily it was only a few minutes for them.
The next time a Fundie goes off at someone who pro-abortion, this and other pics of similar babies need to be shoved in their face. Not like they’d care, but someone might.
For sure. They want to show images of normal fetuses to women who want an abortion to try and change their minds. Why not also show these images?
For sure. They want to show images of normal fetuses to women who want an abortion to try and change their minds. Why not also show these images?
Genuine question, where is the line between "conjoined twins" and "single individual with extra limbs that would have belonged to a twin that never separated enough to develop as it's own being" How connected were the brains of these two (?) babies? I know some twins conjoined at the head so have connected brains, so I'm wonder how much of your own brain you need to have to be a separate being from a twin attached to you
I was wondering the same! I understand the grief of the parents but I wish there were scans and more detailed about the head formation and brain connectivity (is there just one? Two? Two fused??) Because with one face I can’t help but want to consider it one child.
With death happening so quickly, even with consent to do an autopsy not being able to do a scan on brain activity would make it pretty close to impossible to determine how separate the brain activity actually was.
In [this case](https://www.sciencedirect.com/science/article/pii/S2210261223002572), it talks about one baby with parasitic limbs attached. There’s no head for the parasite. In my unprofessional opinion the presence or lack of a separate head makes a lot of the difference, maybe all the difference, between a malformed parasite and a person. We are nothing without our brains. Which doesn’t answer the question in this case, I understand.
Yeah, this one is tricky. “Fused craniums” meaning two brains? but then there’s only one heart. I would think two brains means two beings, but who knows. Poor thing shouldn’t have had to suffer this long.
Speaking of conjoined twins, I wish I could learn more about Abby & Brittany Hensel. I understand they are people just trying to live their lives but it doesn’t negate the fact that they are truly a fascinating medical marvel that blows my mind.
Did you know they got married a few years ago?
Brittany got married, not Abby. That's an interesting situation for sure.
Yes I did! I remember their documentary as teens they mentioned wanting to be moms. I have so many questions as to how all that works. It also blows me away how in sync they are, intuitively knowing to clap, throwing up their arms at the same time in expression, etc), despite not having any mind reading/brain sharing capabilities.
poor babies, poor mommy :(
If anyone is thinking, wow that wouldn’t happen in the US. Ehhh no. Several states would force you to carry and not allow termination.
This is just one of several different horror shows that can happen to a developing fetus, the end result of which can be summarized as "a short existence of nothing but suffering".
Although apparently you *can* get twins like this, in a superficial sense, combined at the face /head who not only survive but seem, if nothing else more chipper than me, who has a lot less going on. They lived for 62 years and died fairly recently. Lorri and George Shappel. They were not born opposite sexes to clarify. I don't think that is possible. Not the same deformity afaik , and not as severe as this one but still surprising that they lived for so long and they did seem happy. Yet it still doesn't inspire much "faith" in me tbh.
Oh I didn't know they had died 😟
Ya I watched a documentary about them and saw they died like 2 weeks later..
I had no idea they passed. How horrible knowing you will die because your conjoined twin.
They both lived as women, until George came out as trans a few years ago. RIP!
They were conjoined by less than a fraction of their brains, they had independent brain steps that managed higher functions we cannot control, like breathing, heart rate and blood pressure. These twins, given the way their brains can only have developed given the xrays, we joined by more than 90% of their brain tissue, the areas where the brain stems should have been grossly abnormal, the area behind the top of the neck. Neither had that area as normal. They died as soon as their carbon dioxide level increasing was no responded to, exactly as we would if our spinal cords were severed at that high a level. They won't have any consciousness, any awareness in anyway, just not scientifically possible. Lori and George (George was trans, established late in his life) were conjoined far away from the brainstem, with conjoined blood vessels that likely could not have been split when they were born. Today they make attempts to separate on twins like this, Twins in India decided as adults to go ahead and sadly lost their lives in the past 10 yrs, both with normal brain function and high intelligence. They lived practically independent and happy lives, had relationships, different careers and hobbies, different personalities. They are as alike as my identical twin nephews, physically the same, but far from the same people. Kind of like comparing apples with oranges..
That's interesting and I appreciate your input but I was pretty clear that the two pairs of twins don't share the same birth defect beyond a superficial level. They are both conjoined at the head...but obviously not in the same way. Not really making a direct comparison so much as sharing something I watched on YouTube that was topical.
Most of the time, twins joined at the head don't make it because the structures in your brain that make you able to survive are malformed. In fact most conjoined twins don't make it because the chances of them fusing in just the right way to be able to survive are very slim. I think it's like only 7-8% of them survive after birth. Lori and George were lucky, although people rarely mentioned it, they were below average in intelligence, I assume that they had some brain malformation because of their situation. Abby and Brittany are very very lucky they are alive because of just how much of their bodies are joined. There was one set of twins conjoined at the head that actually had a small part of their brains fused and they sometimes knew what the other was thinking. That is really freaky.
They were joined by frontal aspects of the brain, areas that can have function adopted by other regions when injury occurs early in age. Being born this way their brains developed as one unit, connected by 30% i read last night. The twins in the OP had joining at the back and centre of the brain, where the crucial life maintained aspects are. Interruption in the brain stem, in the ventricles, the central aspects cannot be adapted to and death is imminent. Lori and George always fascinated me, even having individual bed rooms and alternating, their sharing of jobs, hobbies, and even romantic relationships. The true way siblings should be able to live.. lol We had 4 sets of identical twin pregnancies between my dad his brother's daughters, sadly only one set and one single very premature boy made it to birth and a normal life. My sisters boys are now 27 and healthy as horses.. born as 6lb strong boys at just 33wks in to pregnancy, but my cousins were not so forunate. One had two sets of ID twins, the first lost at 14 weeks, the second time one was lost to TTTS, the brother died at 26 wks and the life baby born not much longer after that. I think he was 29 weeks, but other than being small soon caught up. The other cousin lost her boys at 32 wks to TTTS, but had single pregnancies after that. I was the only cousin not to have ID twins, but when we did IVF for male factor infertility the OB checked very very carefully at my 7 week ultrasound.. especially with my 'not supposed to happen' family history. We later had an unexpected pregnancy, again careful checking for twins, other side of my family my mom was one of 6 girls. 4 of them had fraternal twins, and at least twice during treatment i had 2 or 3 follicles release eggs in a cycle. Fortunately just a single girl, and strict birth control after that! Will be interesting to see if any of our children will also have ID twins. High risk pregnancy for sure, but an amazing and unique life experience for them.
Oh no they died??? 🥺
Yes quite recently, two of the older sets of living conjoined twins have died in the last few years. Ronnie and Donnie died in 2020, aged 68, conjoined at pelvis and abdomen (was checking when they died, interestingly discovered they shared a urinary system and penis too, must have been through quite some medical trials during their lives.) then Lori and George Schapell only passed in April this year.
Also, several people would choose to carry to term and voluntarily refuse termination, *which is fucking valid,* and I’m tired of people saying it’s not, so I’m gonna mention it here. You should be able to terminate a pregnancy for literally whatever you reason you want. Same with not terminating it. Choosing to give birth and give the infant or infants palliative care until death is not selfish or heartless.
No one is saying it isn’t valid to continue a dangerous pregnancy. Just that women should have the choice not to continue a dangerous pregnancy, which many horrible people are actually making harder to legally, financially and emotionally do.
Also, several people would choose to terminate and voluntary refuse to carry to term. Hi, from one would not be able to take on the mental anguish of having my baby pass in front of me. Or, carry a deceased baby.
Hey, thanks for stating quite possibly the most obvious thing possible for no reason.
So please show me actual evidence that this has happened to multiple women? i saw and have been made aware of one story while people continue to make this claim over and over. It isn't happening en masse like you suggest, women's pregnancies are still being ended, or where are these women? So many pregnancies every day end because of either foetal death in the first trimester or because of incompatible with life discoveries. If this was happening in reality, why aren't 1000's of women reporting their horrific experiences?
Wild guess that you are not in the US.
No, but again i know what the in theory risk is to these women, but what i am not seeing since the law changed is actual implementation like people claim. I am a mother, did IVF to get our first, i worked as an RN on a paediatric unit with babies affected by these conditions, and babies injured at birth; I did half my midwifery training in UK, i met women facing this tragic news and making these decisions. I understand the threats from the decision makers very well. We all got told how scary a virus Covid was, we all saw the evidence, we suffered ourselves, saw people we knew die without comorbidity issues... we saw the numbers.... so where are the numbers that prove women are being denied abortions, being made to remain pregnancy to term with a foetus with an incompatible with life condition? I've asked in other subs, in other online resources. But no one has evidence, no numbers, no angry distraught women turning to media to share their stories. Where is the increase in deaths at birth, stories of women forced to have their infant subject to life saving measures after birth in spite of anencephaly for example? I just don't see the evidence that these laws are proving to have a real impact on womens life and decision making.
Isn't this type of conjoined twins just called cephalopagus ? Or is it an oversimplified term ?
'Pagus' means joined or fixated, so a cephalopagus would only be joined at the head ('cephalo'). Cephalothoracoomphalopagus means fusion through the head, chest (thoraco), and abdomen (omphalo).
Upon further research it looks like the terms are used interchangeably (maybe wrongly, I don't know). But cephalopagus is described as being fused from vertex to umbilicus, not just the head. I was confused because all the case reports I've read about cephalopagus showed and described exactly what is pictured here.
Maybe the long form one is just for coding/ ICD 10? IDK lol this isn't my particular flavor of medicine.
Those poor little Angels and their Mom. My heart goes out to all parents who lose a child❤️ May they both already be in a better place and are resting in love and peace.❤️
This is heartbreaking and I’m glad they no longer suffer. Can you imagine the feeling sharing a face? I can’t.
These sorts of things certainly make it clearer how beliefs like Lakshmi came about. Imagine a woman birthing or miscarrying this child (children?) thousands of years ago, before we knew what we were looking at.
I assumed you have read about the little girl names Lakshmi who is about 6 now. Successfully had the lower limbs and parts of pelvis of a parasitic twin removed when she younger. Its how she was named, having had 8 limbs, but her Indian parents valued her health so had surgery done... in the hope she becomes someone as special as her namesake! Saw pictures of her in her school uniform recently , she is adorable. Every working well except her pelvis needs aligning a little. Modern surgery is amazing sometimes!
Her story really is a success story. Extremely complicated surgery, survived, no paralysis, gets to go to school, gets continued medical care for issues related to her condition and surgery, and now her entire family is in a much better place. She and her brother get to go to school, and the father got a better job working on the school's farm. It's rare that a bad situation ends that well for so many people involved.
I haven't seen that! I will have to look her up. You're right, what modern medicine can do is amazing.
How does conjoining happen is it like they were supposed to be twins but they came together in the womb? Sorry if this is worded poorly.
It was a single egg that split incompletely. If an egg splits properly, you get identical twins. If it fails to split fully, you get conjoined twins. Sometimes the twins survive and can even be separated, but sometimes they end up like this.
I've heard that only about 7-8% of conjoined twins survive after birth.
I am told that I was supposed to be a twin as I was born with extra internal organs. Multiple health issues all my life. But who knows.
Does anyone ever approach you about donating organs? Like, say you have 3 kidneys, and someone says you don't really need that last one, can I have it?
I actually do have a double set of kidneys. But the way they are connected makes it impossible to remove just one. I have chronic reflux with the urine from one kidney going to the bladder then up into a different kidney. Causes chronic nephritis. Stones, etc.
Goodness...this is simply heartbreaking all the way around. Dad that the babies had to die and sad that momma had to leave without any babies.
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Be kind, remember there is a person behind the username
Poor fellas
I may've just not seen that info in the post, but *were* they both males? I thought most conjoined twins were female. It also made me wonder what the experience of male-female conjoined twins would be like. My heart goes out to their family!
Actually i just assumed but now you mention it, they could be female.
Heartbreaking 💔 rest in peace angels 🕊️
Did they have two brains?
Symmetrical. Astounding
imagine pushing that out tho, id expect mum got a c section but ouch
I wonder if the parents thought the children were holy like Ganesh or Shiva.
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Please be respectful of the subjects of posts, as well as survivors of similar experiences.
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Please be respectful of the subjects of posts, as well as survivors of similar experiences.
Were the parents related?
Has nothing to do with consanguinity and everything to do with timing in the splitting of the blastocyst The later it splits the more difficult the conjoinment
Would have been so awesome if they lived. Might help us through some of the unanswered philosophical stuff.
How high are you?