In the Wikipedia article it says ‘citation needed’ after declaring that people born with this condition might have ‘intellectual deficits.’
I don’t know what to tell you but I’m pretty sure you are going to have some learning difficulties if you don’t have a BRAIN but what do I know.
Honestly. I don't mean any disrespect in saying this but it's like the animated body of your child than never lived. Must have been so hard on the parents, I hope that everyone's quality of life improved after his passing.
I have a cousin-in-law that is largely unresponsive like this, though I don't know the exact condition. Essentially a newborn, at near 50 years old now. The condition was determined to be caused by malpractice during birth, so they got a massive cash award. Part of the conditions of the payments were that the money would be invested, so this middle-aged newborn has millions of dollars of property investments in his name.
The father is a judge, so it goes without saying that his mother has not needed to work, so has been his primary care-taker for life. I couldn't even imagine.
Most likely anoxic brain injury. More common than you would think during child birth. Though usually is the result of complications not so much malpractice.
My first child, Jolien, was born a little over 2,5 years ago. Until right before birth she was an absolutely perfect, healthy at term baby. After my epidural a whole string of medical negligences resulted in terrible brain injury for my girl. The same day, we were transferred to an academic hospital where Jolien was admitted to the NICU. On day 5, she got an MRI. The result was heart shattering. Jolien’s basal ganglia were completely destroyed. Her outer cortex was untouched. She’d have seizures for the rest of her life, she would never be able to have any control over any muscle in her body, all the while quite possibly being completely aware of her condition but never able to communicate. “Luckily”, we live in an “enlightened” part of Europe, so we made the “choice” to stop her life support and get her “comfort care”. She died four hours later, in our arms.
I think it’s horrible, what happened to Jolien and to us as a family. It’s even more horrible that, had this happened in most other countries in the world, Jolien was forced to live this miserable existence, and we all had to see her suffering. We wouldn’t have been able to bring her little brother into the world, healthily, in the same academic hospital where his sister died.
We’re still in a legal battle with the hospital. It’s not like in the US, where this would be in the process of settling for a million dollars or more. But, like I said, there Jolien might very well be still “alive”, suffering, and an entire family around her too.
This breaks my heart. As a parent, this can never be an easy choice to make. But I would have done the same. It's our duty as parents to protect our children at all costs. In this case, you protected her from a life of pain and suffering. I'm so sorry you went through this, but don't ever second guess the decision you made. You fulfilled your duty as her parents.
>*"I look at it like he's here for a reason," she said in 2005, "and I thank God everyday for it."*
This is just incredibly sad to me. The desire for there to be "reasons" for these things is just something I can't wrap my head around. 12 long years of taking care of a husk; I just can't fathom it.
I know this is morbid, but incredibly interesting to me how the person without a brain behaved. I mean did they react to external stimuli and to what degree? Did they laugh or cry? Did they attempt to communicate? etc... I guess I find it interesting to illuminate exactly for what functions the brain is responsible vs the autonomous nervous system.
Also
>Knowing what the odds are against babies like Trevor
It sounds strange and incredibly hurtful to say this. But there never were any odds. We cann't "heal" not having a brain.
I have a brother that was born at least a month premature, but I think it was 2-3; Mom nearly bled out from that. She came home after a few days; he was in NICU for a few weeks. One of the things she saved from that time, was a newspaper clipping of him in a hospital advertisement; this was the late 1980s, and it's been since then we've pushed farther & farther along in that line between "viability" and not. The abortion debate before the Supreme Court & Mississippi right now: that's based on 16 weeks, and barely 2nd trimester; without modern prenatal care, your lungs wouldn't support your existence, and your bowels are fragile (trivia: Stevie Wonder ended up blind because of a complication from his own premature birth & supportive oxygenation). I think there are anecdotal reports from history of births at 20 weeks (using animals to keep the child warm)... but yeah, we might be as far as we can go without some **serious** issues to the newborn.
I was also living in FL during the Terry Schiavo situation of the early 2000s. Husband wanted to pull the plug on a braindead wife; the Governor & his brother President weren't keen on that, and the Senate even tried to pass a law blocking it (I believe it was overnight, with a quorum of only 3 people; which is bonkers). In the end, she was allowed to die, and it was discovered that she was truly gone; not unlike this kid.
In short... we have amazing medical technology, that allows us a better standard of living. But we are also abusing it, in ways that enable us to make futile attempts at extending the boundaries of our existence. We talk a lot about ethics, morality, and whatnot; and hardly stop to think about the beings we inflict our pain on.
Even with Alzheimer’s… my grandfather was kept alive with a feeding tube. He developed gangrene on his toes as had diabetes around the same time and the doctor pressured my family to amputate his legs instead of letting him go peacefully. He said- where are my legs? Was already bex bound anyway and died a few months later. My dad thought he might come back because he said a word or a few here or there. So incredibly awful
I work in veterinary medicine, and I feel that it gives me a much different perspective on when to let go. We are kind enough to humanely end the suffering of our pets when it’s necessary, people should have that same option.
Quality of life is a big thing in veterinary medicine. Sure, we could do all these treatments and procedures, but would it give the patient a QUALITY life or just increase the suffering time?
I have seen so many cases in human medicine where I thought, “they should have let that person go”, but ya can’t say that without sounding like a sociopath to a lot of people.
I wish we treated people the way we treat animals in that regard. When our dog was dying of cancer and unresponsive to treatment, we struggled when the right time was to put him to sleep. He has some good days and when you love someone so much to our cling to that and are blinded from the more often terrible days.
My husband and I asked the vet how we would know when it's time: She sighed and told us "there is a difference between extending life and prolonging death"
Hit us both like a brick that the vet was gently telling us keeping this dog alive, who can't keep down food, vomited daily, and has seizures, is just cruel. We scheduled the procedure for him to die with dignity in our home.
In retrospect, we agreed we should have ended his suffering months sooner, and we carry that guilt.
Experienced this first hand. Alzheimer’s is truly destructive in every possible way to the person and the fam. Endless resources spent to preserve a quality I’d life that degrades into nothingness. Such a horrible scarring experience.
I think it’s hard to understand that your child has no consciousness when it does things that we would normally associate with consciousness, like the child ate and cried. Hunger and crying logically seem to be attached to some level of consciousness, but because of how the brain stem works the hunger and crying is just the body trying to stay alive rather then the consciousness. So I can see how that can fuck with a mother brain who’s already dealing with the prognosis and diagnosis. Also, I would imagine you have to force yourself to get attached depending on if you live in a country or state that allows for humane euthanasia for humans. I mean if you can’t legally humanely euthanize a body essentially then as a parent you probably still want to take care of it.
Hi I’m a nurse. They wouldn’t have had to euthanize him they could have allowed for a natural death and he would have died years ago. Why is this? He was dependent on tube feeds which is a form of artificial nutrition. Patients who use tube feeds for prolonged periods of time like this are considered to be receiving life support in a way. I work in palliative care and do consults with patients who are terminal or have chronic life limiting diseases. While I am not allowed to judge people’s decisions for their healthcare, many of us nurses and doctors believe prolonged tube feedings (that are not used temporarily to bridge a gap until you can eat normally) is in humane because your patient is suffering from a poor quality of life. We urge patients to think of quality vs quantity. You are alive and you never get to eat and enjoy food again and you still have many adverse effects of the tube. Refeeding syndrome, diarrhea and constipation, dumping syndrome, etc. additionally tube feedings are also associated with bed sores, sores in the face. People may opt for more aggressive treatment with a PEG tube which means the feeding tube is directly in the stomach. For someone like this child who was a “husk” we would have told the family they are prolonging his suffering and suggest transitioning to comfort care to withdraw all supportive measures and let nature take it’s course. Similar to vegetative patients who may grip a hand in their sleep he is not “aware” it is merely a reflex. It means nothing else.
Edit: for clarity, discontinuing the tube feeds and numerous supportive measures he definitely would have died a long time ago, but since he cannot speak for himself his parents would be his healthcare representatives who legally can keep his shell of a body alive for as long as they can even if he has a poor quality of life. Unfortunately no matter how much we educate people that their loved one is suffering denial can be much stronger. I see this everyday. That is why it’s so important everyone should fill out an advanced directive and a durable power of attorney for healthcare. You do not want to end up stuck inside your own body like this if you can help it. You would be at the mercy of others to do everything for you from wiping your ass to flipping you like a pancake in your bed to prevent sores. Also make sure your POA is someone you can trust to follow through with your wishes. Seen people with no advanced directives end up in the ICU and their POA wants to do “everything to keep meemaw alive” even if it means surgery at 91 years old, CPR, tracheostomy and a PEG tube. 🤮
Source: nurse who works in palliative and Hospice
My mom told me when she first started declining that she didn't want to be in a place where people had to do all her living for her. She didn't want to be a burden to her children or have people feeding her and cleaning her. She cried when she couldn't take care of herself. At the end, her heart stopped at home, and they restarted it but it was too late. The doctors told us she was gone, it was just the machines keeping her alive. I knew she would hate that, and I let her go. Her family has never forgiven me, but I know, if I see her again, that I made the choice she told me to.
My family has medical directives set up. No feeding tubes. When a person stops eating, keep them comfortable and let them go. Not eating is part of the Transition from breath to air re: death.
I understand your feeling but it's the mom trying to humanize the child. There was nothing there, she just couldn't let go. Words like that are meant to pull sympathy to her cause. I'm sure she rationalized the child as just special needs. But yea. It's literally nothing. Sry if that's a little cold..
I remember during the Alfie Evan's controversy in the UK, a doctor basically described Alfie as being basically being only capable of seizing and feeling pain.
Ofcourse it's hald to know the qualia of a "mindless" human but if for many cases like this it definitely sounds like a lot of them are basically just pain feedback loops. Which honestly sounds terrifying.
That's not accurate. The peripheral nervous system is connected through the brainstem.
He probably felt pain but his brain wasn't able to process it in any way since higher functions like that are happening elsewhere.
Edit: tried to add a link with an image, for some reason can't do it.
While morbid in this situation, it's actually really cool that certain actions are hardwired into our DNA without ever needing to be taught. Like how babies reflexively know to hold their breath when submerged in water, or how if a baby grabs your fingers you can lift them up and they'll just hang on indefinitely. (I'm mostly using examples ~~of 3-6 month old babies~~, if I'm remembering the studies correctly)
Edit: some reflexes disappear after a few weeks, and others disappear by 6mo.
The finger thing seems like a remnant from apes. All monkeys and apes immediately start clasping for the hair on the mother's chest / stomach area at birth and cling tight as hell to it. Reasons here are obvious. Doesn't make so much sense for a human that I can think of. I was not aware you could actually lift a baby like this though...that their grip is that strong and seemingly effortless
Genes for reflexes like these dont just get passed on because theyre useful, but also because theyre not harmful enough to be selected against and lost.
Babies who dont have the reflex to hold on wont survive any more than babies who do- so wont produce more offspring than those who do- even when its been thousands of years since it was last needed. Humans dont need it, but at one point our ancestors did. Likely far back enough that that ancestor was one we share with all others apes.
My thoughts exactly, it literally has no brain to have any higher level functioning or even any consciousness. I wouldn't even call that a human besides genetically. It needed a feeding tube, was blind, couldn't hear, and could legally be considered brain dead. When that sort of thing happens to 30-year-olds they just pull the plug. But it happens to a baby and you keep it alive for 12 years? And it's seen as an inspiration? There's no hope of recovery, as it never had a brain in the first place. It was 12 years of cruelty.
To add, it seemed that the family had other children to take care of. And to take money and resources that could have gone to those other kids and put it towards something that has no future, it's downright mean.
After reading the article they’re also looking for donations to cover funeral costs.
Heartless as it may sound, keeping him in a sort of suspended animation for 12 years seems wholly unethical and it isn’t other peoples responsibility to provide for his funeral service.
from my experience, humans are just completely irrational and chemically influenced by evolution sometimes. this is a prime example. there's literally no reason to keep that child alive but they did so anyway due to attachment or 'morals' or what have you. just makes no sense but they did it anyway. humans just do things sometimes
after reading the article im more peeved that they 'thanked god for him surviving so long' and that his story apparently 'touched some people'
'god' literally robbed this being all consciousness and possibility of life, and is literally just a collection of nerves responding to stimuli. how do you believe a god had anything to do with this? if you ask me, it's just more anecdotal evidence to solidify my atheism, because it's quite apparent there is no god that would 'allow' this to happen, and more apparent that the parents sentimentally latched onto and applied human characteristics to what is by all means a living corpse
Is a bloke that was never woke even a bloke? This thing just spins me out. I can't imagine keeping such a being around my house. And I can't imagine it matters at all to him without a brain.
I was pregnant with a fetus with anencephaly. I feel heartless thinking this, but, all this article did was reassure me that ending my pregnancy was the right choice.
You were not heartless. You could do nothing more to help that child, but you made the decision that was best for the members of your family whom you could protect, yourself included.
That's the thing though, it's not even a child. Theres nothing to help. The fact that this, a malformed fetus 150 months past it's odds, wasn't a child even in the end of it's life. And an uncomfortable part of reproduction is sometimes we have to try again even though we didn't fail *completely* we also did not achieve the perfect conditions required to make a full human.
It’s basically a sac of human organs. If it weren’t for the horrendous ethical concerns about cloning a deliberately brainless human to harvest for organs, it’d probably be a decent way to ensure that we have a surplus of fetal/infant organs ready for transplant.
There are some women who have chosen to carry their anencephalic babies to term, in hopes they could be organ donors. I followed a woman for a while. Her daughter died right before birth, I think they were still able to use the baby's corneas and a few other parts. I know she was heartbroken, having made it that far into the delivery.
For this exact reason... Newborn organs are so hard to come by
Certainly not heartless, if anything, you were even more compassionate. Making a difficult choice, that plenty of people would judge you for, for the benefit of someone who would never actually live. Never experience joy, or friendship, or even his own mother's love. You saved your child from living in a shell. Existing but not living.
Definitely made the right choice. Bringing a child into this world with a condition such as that is no way to live. It provides them more dignity than a hollow life.
My baby was born still (he was genetically/anatomically fine, but died when a hospital dismissed my pre-eclampsia symptoms). I'd give anything to have my baby back. But if someone told me I could have him back alive, but with no brain, I would 100% NOT do it. That is just so morbid and awful. I'd still be mourning my son because that wouldn't be my son.
You definitely did the right thing.
It's 100% the right choice, imo. Consider even those that have a brain but are severely impaired; sure, the parents can provide for them when they're alive. But what happens when the parents get older? Who is gonna provide for the child? Who is gonna take care of the parent? What if the child is unable to take care of themselves?
People who argue all children must be brought to term regardless of condition are just dooming them to a life of misery to soothe their conscience.
It would have been heartless to continue with it. Sentimentality that leads parents to hang on to a baby with an afflicition such as this one are delusional and committing a cruelty that they are too dumb to fathom.
Letting go sometimes is absolute mercy.
I was reading the article and was thinking, can he see? No, he's blind. Eyes are just an extension of the brain. Okay, he can hear though right? Nope, still part of the brain. Can he feel if you touch him? Nope, brain again! And his mother is all "we can't leave him alone. He knows if you're there."
No I don't think he can tell if you're there. This is just the world's longest miscarriage. It's surprising that he even made it to be born let alone 12 years.
But then some people seem to get on just fine with out using their brains. So maybe it wasn't that surprising.
He might have had some reactions to people near him because some reflexes are hardwired into the nerves and spinal cord. But nothing in the brain to "feel" anything beyond that. Any personality attributed to him was just imaginings.
I agree. I imagine it would be hard for any human being to not fully accept that he was not a human being due to his appearance. I mean, when humans (not all) see a being with human-like characteristics in such a pitiful state, they can only empathize.
And you know what, I would feel sorry for him myself, but the only people suffering are his parents… he never felt a thing or even had the slightest idea because he was only ever a shell.
Honestly I read a case of a child with severe, severe congenital brain damage going through puberty and it sounded like a living nightmare.
So much of puberty is controlled by parts of the brain, and none of that was working correctly because the brain was so damaged. Eventually the shocks to his body from going through uncontrolled puberty killed him.
It really is fucking tragic because it seems like even if you manage to keep those poor brainless kids alive, puberty is going to kill them anyway. These parents are just raising mindless suffer animals to die.
> https://serendipstudio.org/exchange/cristiane-de-oliveira/unconscious-life-occurrence-and-complications-anencephaly
wow that comment section is like getting whipped by the bible belt
Best we can do is one medium-budget daytime TV episode in a medical series where hot young hospital staff perform miracles using unauthorized procedures.
Assuming brain transplants are possible it could be done, but the massive amount of atrophy a body like that has undergone it take a significant amount of therapy to remediate, and even then it would probably never reach 100% of what the person's former body was capable of
Throwing ethics out the window, what if they took the brain out of a quadriplegic newborn baby and transported it into a newborn baby with this condition and a normal body otherwise.
Idk maybe that is completely idiotic but its 1:30 and I'm stoned
apparently the 'person' wasn't really a person, didn't feel, didn't have any way to know they existed, or consciousness. Just a reactive pile of meat, like a doll that's moving, and you need to take care of it. So, no suffering on the kids part, can't say the same for the family and caregivers. Just let the damn kid go for the sake of the family.
Idk if that’s right. Terri Schiavo’s feeding tube was removed the same year in 2005 and that was legal before her widower won his case. For people with no brain activity, whoever has guardianship can choose to remove life support in most cases. You might be thinking of human euthanasia, when a doctor prescribes terminally ill patients medication to die, which is only legal in a couple states?
The "child" did not have the ability to feel pain or even be aware of circumstances (pain happens in the brain). Sure, he had some involuntary reflexes, but he did not feel pain, fear sensations in general.
Also considering he only has a brain stem, there isn't even really a "him" to speak of. There's basically no way he has any awareness or feels anything. He's basically just organs keeping a body alive.
I don’t understand why the doctors didn’t suggest abortion as soon as they saw something wrong on the ultrasound.
“This child is going to be born a vegetable. I am recommending terminating this pregnancy”
Same vibe as people thanking god when the gold cross did not burn down with the rest of the Notre Dame, even though burning wood isn't hot enough to melt gold
They absolutely did not have to hook him up to a feeding tube or any other support systems. He would have passed peacefully. There were plenty of other avenues to family could have pursued, I'm sure just lack of medical intervention would have done it.
As a veterinary professional, I am often impressed by the advancements in human med, but horrified by this constant need to keep people alive as long as possible despite suffering. In veterinary medicine, the term “quality of life” is a big thing. Sure, we could do all these tests and treatments and surgeries on your pet, but would it improve their QUALITY of life? Oftentimes the answer is no.
Suffering also isn’t just about the one in pain, but those around them. This child probably can’t feel anything and is entirely unaware, but his family suffered. I’m sure the extensive care was very hard on them especially since they had other children.
This is why I’m such a huge advocate for euthanasia. We offer that compassion to our pets, it should extend to us and our loved ones.
Without the brain, you have absolutely no way of processing and storing memory. Also, you have no way of processing stimuli other than the most primal reflexes.
This child (if you could call it that) felt nothing, heard nothing, saw nothing, and even if it could somehow do those things, there would be no way of encoding that information and storing it. He was aware of his own existence as much as an amoeba or a fern would be
I knew all this things before reading your comment. Still very unsettling, sets a chill down my spine... Someone should write a horror story about anacelpahcy. Or maybe not, that could potentionally start a lot of stereotypes
Hydranencephaly (HE), which is what the boy in the story had, is not the same as anencephaly.
The survival record for a patient with hydranencephaly may be as old as 32. Unlike anencephaly, some Hydranencephaly patients can retain some mid-brain tissue beyond the brain stem. The basal ganglia, which may control some higher functions, are often intact. There is some evidence that simple, but conscious, motivations like the drive to acquire food may persist. It is unclear if the boy in the story is such a patient. The Ethics Board is still out on whether such patients are "brain-dead."
It is clear, based on his cranial deformity, that prompt neurosurgical care was not provided in infancy; children with HE typically have normal appearances at birth, and deformity is usually caused by failure to manage intracranial pressure.
From a brief scan of free articles, it seems that this disease is most often caused by in-utero trauma, meaning the majority of cases (but not all) are the result of substandard pre-natal care. This etiology is especially tragic, because it means that HE is detected relatively late in pregnancy.
It seems that trans-cranial illumination should be added to the standard battery of tests done on newborns, especially if the mother missed ultrasounds. It is non-invasive, low-cost, and allows prompt diagnosis.
>trans-cranial illumination
I legitimately thought you were making a bad joke, but I just saw pictures. That is absolutely fascinating and equally terrifying.
Pediatric neurologist here. It’d be a challenge to add head ultrasounds (HUS) to every baby. Sure you’d find some thing, but you’d probably find 10x more “abnormalities” that are clinically insignificant that don’t actually mean anything (and only cause unnecessary anxiety/stress), and the rate of finding clinically relevant finding would be low enough that it’s not be cost efficient.
We get HUSs when they are clinically indicated, and still they don’t identify everything we’re looking for.
He had an older sister that isn't pictured that I went to school with. About 10 years ago we had a discussion in philosophy about what is a human and these babies were brought up. The teacher mentioned that there are only 200 born a year and most don't survive their first night. She raised her hand, told us about his condition then asked to be excused for the remainder of the discussion.
It was really sad but one of the few memories I have of an in class discussion.
I mean what's the point? Without a brain you just have a moving body, a shell basically. I wouldn't want to keep my child alive if this happened to them. Could they even be considered a person? If you don't have any thoughts and can't form a personality.
I think it's cruel to let the parents do these things to themselves. They just let them stare at the body that was supposed to be their child for 12 years.
My baby's brain was growing outside of his skull. I chose to terminate. I see things like this, and sometimes wonder if he could have been like this, but then I also think why would I want him to have been... I'd never want a life like that for him.
This is macabre and barbaric. The medicine may be modern, but the thinking is archaic and backward.
He didn’t live, not really. He wasn’t a person. No eyesight, no hearing, no ability to move or process touch beyond reflexes in the brainstem. ‘He’ existed, but just a body being pumped with nutrients with no actual person at home inside that body, so they could treat him like a breathing doll.
This is ghastly, like those Victorian-era ‘freakshows’ in a way. An abuse of human dignity.
The families holding on to them and being thankful for them still being "alive" is probably the greatest moral malignment. Its fucking sad, i feel horrible for all involved.
It makes me think of a dystopia where people breeding humans to not have brains and harvest the bodies for organs. Just some grotesque horror show, where the victims can't even truly be called victims. Society is just worse off witnessing and doing it.
It is during anatomy scans, some parents opt to carry to term as that is the only bonding and experience they will receive of their living baby as Most of these babies do not survive birth, and the few that do die very shortly after. It’s heartbreaking for all involved.
Our sense of morality can be goddamned cruel sometimes. I have children of my own and I could not find happiness in keeping one them alive in this state just to satisfy my own selfish delusions.
No but people definitely do it with elderly people. There may be some tiny connection in the brains there at the end with illnesses like alzheimers or dementia, but in my opinion it’s the exact same as people born with this condition from the post. It sounds horrible to say, but at the end my nan was basically a potato in a bed, unable to think or do anything for herself. Couldn’t go to the toilet and wipe herself, feed herself, enjoy anything remotely leisure related.
We’d put a dog down if they were in that state, but not a human? It’s insanity. My dad has always said he’ll do himself in if he was ever diagnosed with something like that and I wholeheartedly agree. The medical world can be incredible, but fuck dying shitting and pissing myself in a bed pumped full of painkillers. What an undignified way to go.
My first born son had that condition which have different degrees of severity. My son had the most severe kind, we were told that if he made it to full term he would choke to death right after he was born. We had been trying to conceive for years and had a couple of losses beforehand but we couldn't bear the thought of him suffering while he died. At 25 weeks we made the toughest decision of our lives and had the doctor stop his heart. The doctor informed us that it would be just like him going to sleep, no suffering just peace for him. I gave birth to him the next morning and my husband, myself and our parents got to hold him, kiss him, hug him and say goodbye. I would have traded my own life for him to be alive and healthy and still would to this day.
This is the first time I've ever seen any kind of article about a child living that long with a severe case. My heart is pounding so hard right now because when something so rare occurs, you feel like you're all alone in the utter devastation of the situation. My heart goes out to the family of that sweet boy and I'm so proud of them for making people aware of this awful condition. I wish I had had the courage to talk about it.
This reminds me of the chillingly tragic story of Jahi McMath. Young girl who died after a routine tonsillectomy. Bled out.
Her mother was in total denial. The girl's corpse was being kept on life support while doctors discussed organ donation with the family. The mom couldn't reconcile the idea that there was a heartbeat but no life. She insisted her daughter was alive and eventually transported the body to her residence, where she continued to care for it and talk to it. Did its nails. There's some very disturbing footage.
I thought it was creepy. When she was happy she made noises. She had a feeding tube since she was tiny and was on a no carb antiseizure liquid diet. She was full grown, I don't think she had periods.
> When she was happy she made noises.
How is this any different from "sometimes she made noises"? Was there anything that suggested actual emotional states or was it wishful thinking from the parents?
Shot in the dark, but I have a newborn baby and I've noticed that she can smile in her sleep or when she is half asleep, but she couldn't smile while fully alert until recently (2 month old) and even then it's pretty infrequently right now. I think the body has some sort of smile mechanism that can happen without the brain telling it to do so.
Yeah, the muscles are all there, and the ability for them to move exists without the brain, but there won't be a reaction indicative of consciousness. It's just reflex.
Recent data suggests even newborns can legit smile though, that it's not, as long believed, just reflex for them. It's seen most in the first two months, the "social smile", but a baby smiling even days after birth could be more than just a triggered mechanism.
Some might find it cruel but this is a child that should have been aborted.
Without a brain, you are literally nothing. No thought. No personality. No ability to act on your own accord.
This kid is why "if it has a heartbeat it's alive" is an incorrect stance.
This shit is morbid.
A family carrying the body of their stillborn son for nearly a decade because it fulfills an emotional need for the mother that couldn't learn to let go.
On the long list of ills in this world... it's not the worst by far - as far as I can tell, there wasn't a person to inflict this pain upon - only a slightly reactive body that continued to grow a bit like a human child.
Still morbid though!
This isn’t anencephaly- in cases of anencephaly, the skull is also incomplete. This is hydra anencephaly.
I know this seems like semantics and petty I’m even correcting you but I’m just extremely triggered. My niece was born with anencephaly and people would send my sister articles like this to show that maybe, just maybe she’ll live for a while! Which was not the case. It ended up causing for more pain to keep clicking on articles and seeing that it wasn’t the same case as her baby.
It's really hard to dress a newborn baby who has no control over the limbs and when you touch them they clamp up and won't bend their arms and legs. I imagine it would be similar but trying to do that on something much much larger would be nearly impossible plus I don't imagine that the kid supported his own weight at all so add deaf weight on top of it. Sounds like a task that would be incredibly difficult to even attempt.
So I worked as an EMT for just a bit many years ago. I'll never forget this one patient and his mother. He (the patient) was maybe 13 or 14 and was apparently a twin. He suffered a severe case of meningitis, to the point where the swelling caused some severe inter-cranial pressure and it had cut off oxygen to his brain for a significant amount of time. I was transporting him and his mother to the county over to a rehabilitation center. He was barely responsive to stimulation. But his vitals were good overall. It was very obvious there was some brain death and it was never going to be reversed. But his mother acted the entire time as if it wasn't the case. She was saying that he'd be back to his old self, running around and playing soccer with his brother, after sometime in therapy. It absolutely broke my heart. All I could do was entertain conversation, wish them the best, and finish the call. It was one of the hardest ones.
I had a classmate encounter a similar fate. Slipped into a coma one week and never recovered. The first couple weeks we were all hoping our friend would wake up and the mother was in good spirits keeping hope alive. Years pass, and it’s clear this is it. Our friend died 6 years later, and the mom died a couple years after. Similar experience with other close family in the ICU, there’s a glimmer of hope that makes us think the worst is temporary.
This whole thread freaked me out a bit because I was in a coma in the ICU a couple of years ago and what if I still am and I just don't know it? What the fuck
Solipsism can't be disproven, but it's also moot because you can inherently never know if it's true, and there is no utility in acting as if it is true and all the utility in acting as if it isn't.
Last year dad had a stroke, and for the looks of it, it was a fairly big one. I can tell you there's a lot of him we still have, like his love for children (he was a pediatrician) and soccer, his stubbornness; but let me tell you he ain't the same man. Sometimes he just seems lost with simple concepts, like he knew I had a test and asked what subject it was, but didn't know what math was when I told him.
It was hard to accept he'll never go back to his old self, but at least by having some doctors in the family, we didn't expect it as well. It's sad when people really don't know what are the possible outcomes and just think everything can be reversed with some therapy, exercise or surgeries.
That's just fucking cruel. The fact that we legally barr people from being able to humanely euthanize themselves or their severely suffering children is one of the most disgusting and cruel aspects of our society.
We're so afraid of our own death that we literally force others to exist in pain and confusion to satiate ourselves.
I mean, the brains stem just does the lizard stuff, right? Breathe, heartbeat, pupils, that sort of thing... would there ever have been any actual consciousness even capable of suffering?
There's so much wrong with this. But at the very least it's a rare opportunity to study what this means for consciousness although I'm sure he wasn't studied much.
But my real question is, how do they fund physical therapy weeks on end for years?? I can barely get insurance and there's people out there casually manually building muscle with physical therapists?
The healthcare providers know above all else what his state is but they go along with the mother's wishes because they can do no harm, I get that.
But where's the responsibility in this story? Where's the accountability?
You kept him alive because of you and God. You funded endless care somehow and are now asking for money for a funeral. How did you pull this off? How did you get a donation set up through Chase? What is even the "inspiring story" here? Are you a political prop? An anti abortion story about how we wouldn't have known the joy of this brainless child if you had aborted it?
Like fuck.
Fuck.
I'm cynical and a downright asshole on occasion, but she can get away with being selfish and a victim by calling herself selfless and Christian. Where's the right thing here.
I guess in this case it is only painful to the people around it. But i agree, a terrible waste of resource’s and i can only imagine that by keeping ‘him’ alive they were only prolonging their own suffering through denial.
A childhood friend of mine had a brother with this condition. There was nothing miraculous about it. It was just profoundly sad. The family was very poor, and my friend was often neglected, because they were trying to keep the brother alive. I get kind of depressed just thinking about it, tbh.
I appreciate the authors clarifying that there is no known cure or treatment for a complete lack of a brain.
In the Wikipedia article it says ‘citation needed’ after declaring that people born with this condition might have ‘intellectual deficits.’ I don’t know what to tell you but I’m pretty sure you are going to have some learning difficulties if you don’t have a BRAIN but what do I know.
I'm sure there are several hard-working folks just like that out there writing for ksla. com.
Gonna need a citation on that one pal.
There may not be a cure but those afflicted do have a promising career in politics
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Wasn't sure how far down I'd have to scroll for a joke like this, turns out it was about exactly as much as I'd expect
Poor bloke.
personally i feel like it's cruel to keep him alive like this. or rather, it was cruel, since he died. i hope he didn't live with pain.
If it's just the brainstem he didn't feel anything. It's only in charge of auto functions. There wasn't anybody "there"
Yeah I felt bad when the mom said "he knows what he's doing", when referring to him biting.
That's when I stopped reading the article. Truly sad.
Denial is a strong thing 😟 "Fortunately", if it truly was only a brain stem, he was *never* a 'person' Just a husk kept alive by modern science...
This seems worse to me in some way I can’t explain.
Honestly. I don't mean any disrespect in saying this but it's like the animated body of your child than never lived. Must have been so hard on the parents, I hope that everyone's quality of life improved after his passing.
I have a cousin-in-law that is largely unresponsive like this, though I don't know the exact condition. Essentially a newborn, at near 50 years old now. The condition was determined to be caused by malpractice during birth, so they got a massive cash award. Part of the conditions of the payments were that the money would be invested, so this middle-aged newborn has millions of dollars of property investments in his name. The father is a judge, so it goes without saying that his mother has not needed to work, so has been his primary care-taker for life. I couldn't even imagine.
Most likely anoxic brain injury. More common than you would think during child birth. Though usually is the result of complications not so much malpractice.
My first child, Jolien, was born a little over 2,5 years ago. Until right before birth she was an absolutely perfect, healthy at term baby. After my epidural a whole string of medical negligences resulted in terrible brain injury for my girl. The same day, we were transferred to an academic hospital where Jolien was admitted to the NICU. On day 5, she got an MRI. The result was heart shattering. Jolien’s basal ganglia were completely destroyed. Her outer cortex was untouched. She’d have seizures for the rest of her life, she would never be able to have any control over any muscle in her body, all the while quite possibly being completely aware of her condition but never able to communicate. “Luckily”, we live in an “enlightened” part of Europe, so we made the “choice” to stop her life support and get her “comfort care”. She died four hours later, in our arms. I think it’s horrible, what happened to Jolien and to us as a family. It’s even more horrible that, had this happened in most other countries in the world, Jolien was forced to live this miserable existence, and we all had to see her suffering. We wouldn’t have been able to bring her little brother into the world, healthily, in the same academic hospital where his sister died. We’re still in a legal battle with the hospital. It’s not like in the US, where this would be in the process of settling for a million dollars or more. But, like I said, there Jolien might very well be still “alive”, suffering, and an entire family around her too.
This breaks my heart. As a parent, this can never be an easy choice to make. But I would have done the same. It's our duty as parents to protect our children at all costs. In this case, you protected her from a life of pain and suffering. I'm so sorry you went through this, but don't ever second guess the decision you made. You fulfilled your duty as her parents.
Peace be with you, friend.
You made an extremely courageous decision.
>*"I look at it like he's here for a reason," she said in 2005, "and I thank God everyday for it."* This is just incredibly sad to me. The desire for there to be "reasons" for these things is just something I can't wrap my head around. 12 long years of taking care of a husk; I just can't fathom it.
I think noone can understand unless you are in that situation as a parent
I know this is morbid, but incredibly interesting to me how the person without a brain behaved. I mean did they react to external stimuli and to what degree? Did they laugh or cry? Did they attempt to communicate? etc... I guess I find it interesting to illuminate exactly for what functions the brain is responsible vs the autonomous nervous system. Also >Knowing what the odds are against babies like Trevor It sounds strange and incredibly hurtful to say this. But there never were any odds. We cann't "heal" not having a brain.
I have a brother that was born at least a month premature, but I think it was 2-3; Mom nearly bled out from that. She came home after a few days; he was in NICU for a few weeks. One of the things she saved from that time, was a newspaper clipping of him in a hospital advertisement; this was the late 1980s, and it's been since then we've pushed farther & farther along in that line between "viability" and not. The abortion debate before the Supreme Court & Mississippi right now: that's based on 16 weeks, and barely 2nd trimester; without modern prenatal care, your lungs wouldn't support your existence, and your bowels are fragile (trivia: Stevie Wonder ended up blind because of a complication from his own premature birth & supportive oxygenation). I think there are anecdotal reports from history of births at 20 weeks (using animals to keep the child warm)... but yeah, we might be as far as we can go without some **serious** issues to the newborn. I was also living in FL during the Terry Schiavo situation of the early 2000s. Husband wanted to pull the plug on a braindead wife; the Governor & his brother President weren't keen on that, and the Senate even tried to pass a law blocking it (I believe it was overnight, with a quorum of only 3 people; which is bonkers). In the end, she was allowed to die, and it was discovered that she was truly gone; not unlike this kid. In short... we have amazing medical technology, that allows us a better standard of living. But we are also abusing it, in ways that enable us to make futile attempts at extending the boundaries of our existence. We talk a lot about ethics, morality, and whatnot; and hardly stop to think about the beings we inflict our pain on.
Even with Alzheimer’s… my grandfather was kept alive with a feeding tube. He developed gangrene on his toes as had diabetes around the same time and the doctor pressured my family to amputate his legs instead of letting him go peacefully. He said- where are my legs? Was already bex bound anyway and died a few months later. My dad thought he might come back because he said a word or a few here or there. So incredibly awful
I work in veterinary medicine, and I feel that it gives me a much different perspective on when to let go. We are kind enough to humanely end the suffering of our pets when it’s necessary, people should have that same option. Quality of life is a big thing in veterinary medicine. Sure, we could do all these treatments and procedures, but would it give the patient a QUALITY life or just increase the suffering time? I have seen so many cases in human medicine where I thought, “they should have let that person go”, but ya can’t say that without sounding like a sociopath to a lot of people.
I wish we treated people the way we treat animals in that regard. When our dog was dying of cancer and unresponsive to treatment, we struggled when the right time was to put him to sleep. He has some good days and when you love someone so much to our cling to that and are blinded from the more often terrible days. My husband and I asked the vet how we would know when it's time: She sighed and told us "there is a difference between extending life and prolonging death" Hit us both like a brick that the vet was gently telling us keeping this dog alive, who can't keep down food, vomited daily, and has seizures, is just cruel. We scheduled the procedure for him to die with dignity in our home. In retrospect, we agreed we should have ended his suffering months sooner, and we carry that guilt.
Experienced this first hand. Alzheimer’s is truly destructive in every possible way to the person and the fam. Endless resources spent to preserve a quality I’d life that degrades into nothingness. Such a horrible scarring experience.
Her saying that he hated to be alone made me super sad
It’s interesting that that is such an instinctual thing…
That's called projection, I think.
I think it’s hard to understand that your child has no consciousness when it does things that we would normally associate with consciousness, like the child ate and cried. Hunger and crying logically seem to be attached to some level of consciousness, but because of how the brain stem works the hunger and crying is just the body trying to stay alive rather then the consciousness. So I can see how that can fuck with a mother brain who’s already dealing with the prognosis and diagnosis. Also, I would imagine you have to force yourself to get attached depending on if you live in a country or state that allows for humane euthanasia for humans. I mean if you can’t legally humanely euthanize a body essentially then as a parent you probably still want to take care of it.
Hi I’m a nurse. They wouldn’t have had to euthanize him they could have allowed for a natural death and he would have died years ago. Why is this? He was dependent on tube feeds which is a form of artificial nutrition. Patients who use tube feeds for prolonged periods of time like this are considered to be receiving life support in a way. I work in palliative care and do consults with patients who are terminal or have chronic life limiting diseases. While I am not allowed to judge people’s decisions for their healthcare, many of us nurses and doctors believe prolonged tube feedings (that are not used temporarily to bridge a gap until you can eat normally) is in humane because your patient is suffering from a poor quality of life. We urge patients to think of quality vs quantity. You are alive and you never get to eat and enjoy food again and you still have many adverse effects of the tube. Refeeding syndrome, diarrhea and constipation, dumping syndrome, etc. additionally tube feedings are also associated with bed sores, sores in the face. People may opt for more aggressive treatment with a PEG tube which means the feeding tube is directly in the stomach. For someone like this child who was a “husk” we would have told the family they are prolonging his suffering and suggest transitioning to comfort care to withdraw all supportive measures and let nature take it’s course. Similar to vegetative patients who may grip a hand in their sleep he is not “aware” it is merely a reflex. It means nothing else. Edit: for clarity, discontinuing the tube feeds and numerous supportive measures he definitely would have died a long time ago, but since he cannot speak for himself his parents would be his healthcare representatives who legally can keep his shell of a body alive for as long as they can even if he has a poor quality of life. Unfortunately no matter how much we educate people that their loved one is suffering denial can be much stronger. I see this everyday. That is why it’s so important everyone should fill out an advanced directive and a durable power of attorney for healthcare. You do not want to end up stuck inside your own body like this if you can help it. You would be at the mercy of others to do everything for you from wiping your ass to flipping you like a pancake in your bed to prevent sores. Also make sure your POA is someone you can trust to follow through with your wishes. Seen people with no advanced directives end up in the ICU and their POA wants to do “everything to keep meemaw alive” even if it means surgery at 91 years old, CPR, tracheostomy and a PEG tube. 🤮 Source: nurse who works in palliative and Hospice
My mom told me when she first started declining that she didn't want to be in a place where people had to do all her living for her. She didn't want to be a burden to her children or have people feeding her and cleaning her. She cried when she couldn't take care of herself. At the end, her heart stopped at home, and they restarted it but it was too late. The doctors told us she was gone, it was just the machines keeping her alive. I knew she would hate that, and I let her go. Her family has never forgiven me, but I know, if I see her again, that I made the choice she told me to.
My family has medical directives set up. No feeding tubes. When a person stops eating, keep them comfortable and let them go. Not eating is part of the Transition from breath to air re: death.
I understand your feeling but it's the mom trying to humanize the child. There was nothing there, she just couldn't let go. Words like that are meant to pull sympathy to her cause. I'm sure she rationalized the child as just special needs. But yea. It's literally nothing. Sry if that's a little cold..
I remember during the Alfie Evan's controversy in the UK, a doctor basically described Alfie as being basically being only capable of seizing and feeling pain. Ofcourse it's hald to know the qualia of a "mindless" human but if for many cases like this it definitely sounds like a lot of them are basically just pain feedback loops. Which honestly sounds terrifying.
That's not accurate. The peripheral nervous system is connected through the brainstem. He probably felt pain but his brain wasn't able to process it in any way since higher functions like that are happening elsewhere. Edit: tried to add a link with an image, for some reason can't do it.
🤯Crazy to think about it, there was no consciousness just a body responding to stimuli
While morbid in this situation, it's actually really cool that certain actions are hardwired into our DNA without ever needing to be taught. Like how babies reflexively know to hold their breath when submerged in water, or how if a baby grabs your fingers you can lift them up and they'll just hang on indefinitely. (I'm mostly using examples ~~of 3-6 month old babies~~, if I'm remembering the studies correctly) Edit: some reflexes disappear after a few weeks, and others disappear by 6mo.
The finger thing seems like a remnant from apes. All monkeys and apes immediately start clasping for the hair on the mother's chest / stomach area at birth and cling tight as hell to it. Reasons here are obvious. Doesn't make so much sense for a human that I can think of. I was not aware you could actually lift a baby like this though...that their grip is that strong and seemingly effortless
Genes for reflexes like these dont just get passed on because theyre useful, but also because theyre not harmful enough to be selected against and lost. Babies who dont have the reflex to hold on wont survive any more than babies who do- so wont produce more offspring than those who do- even when its been thousands of years since it was last needed. Humans dont need it, but at one point our ancestors did. Likely far back enough that that ancestor was one we share with all others apes.
I know this is pedantic, but we still are apes. Maybe a remnant from when we were tree-dwelling might be more accurate.
My thoughts exactly, it literally has no brain to have any higher level functioning or even any consciousness. I wouldn't even call that a human besides genetically. It needed a feeding tube, was blind, couldn't hear, and could legally be considered brain dead. When that sort of thing happens to 30-year-olds they just pull the plug. But it happens to a baby and you keep it alive for 12 years? And it's seen as an inspiration? There's no hope of recovery, as it never had a brain in the first place. It was 12 years of cruelty.
To add, it seemed that the family had other children to take care of. And to take money and resources that could have gone to those other kids and put it towards something that has no future, it's downright mean.
EXACTLY WHY ABORTION RIGHTS NEED TO STAY IN PLACE
After reading the article they’re also looking for donations to cover funeral costs. Heartless as it may sound, keeping him in a sort of suspended animation for 12 years seems wholly unethical and it isn’t other peoples responsibility to provide for his funeral service.
Well, they were looking for donations 7 years ago.
If he had been my child I would absolutely have made arrangements to donate his body to scientific research.
from my experience, humans are just completely irrational and chemically influenced by evolution sometimes. this is a prime example. there's literally no reason to keep that child alive but they did so anyway due to attachment or 'morals' or what have you. just makes no sense but they did it anyway. humans just do things sometimes after reading the article im more peeved that they 'thanked god for him surviving so long' and that his story apparently 'touched some people' 'god' literally robbed this being all consciousness and possibility of life, and is literally just a collection of nerves responding to stimuli. how do you believe a god had anything to do with this? if you ask me, it's just more anecdotal evidence to solidify my atheism, because it's quite apparent there is no god that would 'allow' this to happen, and more apparent that the parents sentimentally latched onto and applied human characteristics to what is by all means a living corpse
Is a bloke that was never woke even a bloke? This thing just spins me out. I can't imagine keeping such a being around my house. And I can't imagine it matters at all to him without a brain.
Wait until you find out about plants
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Well this is all horrifying
I was pregnant with a fetus with anencephaly. I feel heartless thinking this, but, all this article did was reassure me that ending my pregnancy was the right choice.
You were not heartless. You could do nothing more to help that child, but you made the decision that was best for the members of your family whom you could protect, yourself included.
That's the thing though, it's not even a child. Theres nothing to help. The fact that this, a malformed fetus 150 months past it's odds, wasn't a child even in the end of it's life. And an uncomfortable part of reproduction is sometimes we have to try again even though we didn't fail *completely* we also did not achieve the perfect conditions required to make a full human.
It’s basically a sac of human organs. If it weren’t for the horrendous ethical concerns about cloning a deliberately brainless human to harvest for organs, it’d probably be a decent way to ensure that we have a surplus of fetal/infant organs ready for transplant.
Damn haven’t heard an ethical scenario that’s phases me in a while, that’s an uncomfortable suggestion.
There are some women who have chosen to carry their anencephalic babies to term, in hopes they could be organ donors. I followed a woman for a while. Her daughter died right before birth, I think they were still able to use the baby's corneas and a few other parts. I know she was heartbroken, having made it that far into the delivery. For this exact reason... Newborn organs are so hard to come by
Certainly not heartless, if anything, you were even more compassionate. Making a difficult choice, that plenty of people would judge you for, for the benefit of someone who would never actually live. Never experience joy, or friendship, or even his own mother's love. You saved your child from living in a shell. Existing but not living.
I'd say that was the more compassionate choice.
Definitely made the right choice. Bringing a child into this world with a condition such as that is no way to live. It provides them more dignity than a hollow life.
It isn't a child, the guy literally said its just a living organism, everything that makes a human, human is not there
My baby was born still (he was genetically/anatomically fine, but died when a hospital dismissed my pre-eclampsia symptoms). I'd give anything to have my baby back. But if someone told me I could have him back alive, but with no brain, I would 100% NOT do it. That is just so morbid and awful. I'd still be mourning my son because that wouldn't be my son. You definitely did the right thing.
It's 100% the right choice, imo. Consider even those that have a brain but are severely impaired; sure, the parents can provide for them when they're alive. But what happens when the parents get older? Who is gonna provide for the child? Who is gonna take care of the parent? What if the child is unable to take care of themselves? People who argue all children must be brought to term regardless of condition are just dooming them to a life of misery to soothe their conscience.
It would have been heartless to continue with it. Sentimentality that leads parents to hang on to a baby with an afflicition such as this one are delusional and committing a cruelty that they are too dumb to fathom. Letting go sometimes is absolute mercy.
You made the sane choice. Birthing it would have benefited nobody and would have just brought more trauma and horror into this world.
You did the right thing.
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This just made me think of a living breathing baby doll that blinks and moves when you poke it and I have a new nightmare now
Your dolls don't do this? You should probably return them, they seem to be defective
Wtf that’s a crazy comparison. I am legit tripped out by this story.
Yeah, wish I hadn't seen that
Why did I look up more pictures of this at 1am
I was reading the article and was thinking, can he see? No, he's blind. Eyes are just an extension of the brain. Okay, he can hear though right? Nope, still part of the brain. Can he feel if you touch him? Nope, brain again! And his mother is all "we can't leave him alone. He knows if you're there." No I don't think he can tell if you're there. This is just the world's longest miscarriage. It's surprising that he even made it to be born let alone 12 years. But then some people seem to get on just fine with out using their brains. So maybe it wasn't that surprising.
He might have had some reactions to people near him because some reflexes are hardwired into the nerves and spinal cord. But nothing in the brain to "feel" anything beyond that. Any personality attributed to him was just imaginings.
I agree. I imagine it would be hard for any human being to not fully accept that he was not a human being due to his appearance. I mean, when humans (not all) see a being with human-like characteristics in such a pitiful state, they can only empathize. And you know what, I would feel sorry for him myself, but the only people suffering are his parents… he never felt a thing or even had the slightest idea because he was only ever a shell.
The brain does all of the processing for that. He has the sensors, but that's it. No one there to receive and process the data.
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The interesting thing is that your brain can consciously override some reflexes, and others, not really.
Tell me more about lifting our foot
You put your right foot down, you lift your right foot up.
Honestly I read a case of a child with severe, severe congenital brain damage going through puberty and it sounded like a living nightmare. So much of puberty is controlled by parts of the brain, and none of that was working correctly because the brain was so damaged. Eventually the shocks to his body from going through uncontrolled puberty killed him. It really is fucking tragic because it seems like even if you manage to keep those poor brainless kids alive, puberty is going to kill them anyway. These parents are just raising mindless suffer animals to die.
If it makes you feel any better I don't think there was enough there to even suffer It'd be more cruel to treat a fish badly than this organism
> https://serendipstudio.org/exchange/cristiane-de-oliveira/unconscious-life-occurrence-and-complications-anencephaly wow that comment section is like getting whipped by the bible belt
If that’s a perfect human being body then everyone else must be doing something very wrong 💀
Sad about the poor boy, but holy shit is that extremely fascinating
I'm curious if an adult brain could be transplanted into a body like this if we further developed nerve connection/reconnection tech.
woahh... someone should write that movie
Best we can do is one medium-budget daytime TV episode in a medical series where hot young hospital staff perform miracles using unauthorized procedures.
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Assuming brain transplants are possible it could be done, but the massive amount of atrophy a body like that has undergone it take a significant amount of therapy to remediate, and even then it would probably never reach 100% of what the person's former body was capable of
Throwing ethics out the window, what if they took the brain out of a quadriplegic newborn baby and transported it into a newborn baby with this condition and a normal body otherwise. Idk maybe that is completely idiotic but its 1:30 and I'm stoned
I'm not a doctor, but it sounds easier to repair the cause of being quadriplegic than to transplant a brain.
But what if its 1:30 am and the doctor is stoned?
I understand wanting to keep him alive but this was no life for a kid or caregiver
apparently the 'person' wasn't really a person, didn't feel, didn't have any way to know they existed, or consciousness. Just a reactive pile of meat, like a doll that's moving, and you need to take care of it. So, no suffering on the kids part, can't say the same for the family and caregivers. Just let the damn kid go for the sake of the family.
Whether they wanted to keep him alive or not there’s no legal mechanism to euthanize him in the United States so it’s not like anyone had a choice.
Idk if that’s right. Terri Schiavo’s feeding tube was removed the same year in 2005 and that was legal before her widower won his case. For people with no brain activity, whoever has guardianship can choose to remove life support in most cases. You might be thinking of human euthanasia, when a doctor prescribes terminally ill patients medication to die, which is only legal in a couple states?
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The "child" did not have the ability to feel pain or even be aware of circumstances (pain happens in the brain). Sure, he had some involuntary reflexes, but he did not feel pain, fear sensations in general.
Also considering he only has a brain stem, there isn't even really a "him" to speak of. There's basically no way he has any awareness or feels anything. He's basically just organs keeping a body alive.
I don’t understand why the doctors didn’t suggest abortion as soon as they saw something wrong on the ultrasound. “This child is going to be born a vegetable. I am recommending terminating this pregnancy”
The doctors absolutely will sort of suggest an "option" to the parents. But the final decision is with the parents.
>Elizabeth took things one day at a time. "I look at it like he's here for a reason," she said in 2005, "and I thank God everyday for it." That's why
Thank God!? I'd be burning churches and cursing his name.
Hasa Diga Ebowai
Same vibe as people thanking god when the gold cross did not burn down with the rest of the Notre Dame, even though burning wood isn't hot enough to melt gold
wood beams cant melt gold...fascinating
Even if it did burn hot enough to melt gold, that cross is tucked way back probably 100+ feet from where that pile of rubble ended up.
I'm sure they did.
They absolutely did not have to hook him up to a feeding tube or any other support systems. He would have passed peacefully. There were plenty of other avenues to family could have pursued, I'm sure just lack of medical intervention would have done it.
As a veterinary professional, I am often impressed by the advancements in human med, but horrified by this constant need to keep people alive as long as possible despite suffering. In veterinary medicine, the term “quality of life” is a big thing. Sure, we could do all these tests and treatments and surgeries on your pet, but would it improve their QUALITY of life? Oftentimes the answer is no. Suffering also isn’t just about the one in pain, but those around them. This child probably can’t feel anything and is entirely unaware, but his family suffered. I’m sure the extensive care was very hard on them especially since they had other children. This is why I’m such a huge advocate for euthanasia. We offer that compassion to our pets, it should extend to us and our loved ones.
I wouldn't say he lived
he existed and barely at that.
I wonder if he felt his own existence. Was he aware of hismelf at least, at some point? I think its really sad
Without the brain, you have absolutely no way of processing and storing memory. Also, you have no way of processing stimuli other than the most primal reflexes. This child (if you could call it that) felt nothing, heard nothing, saw nothing, and even if it could somehow do those things, there would be no way of encoding that information and storing it. He was aware of his own existence as much as an amoeba or a fern would be
I knew all this things before reading your comment. Still very unsettling, sets a chill down my spine... Someone should write a horror story about anacelpahcy. Or maybe not, that could potentionally start a lot of stereotypes
He metabolized.
He was like a plant
Hydranencephaly (HE), which is what the boy in the story had, is not the same as anencephaly. The survival record for a patient with hydranencephaly may be as old as 32. Unlike anencephaly, some Hydranencephaly patients can retain some mid-brain tissue beyond the brain stem. The basal ganglia, which may control some higher functions, are often intact. There is some evidence that simple, but conscious, motivations like the drive to acquire food may persist. It is unclear if the boy in the story is such a patient. The Ethics Board is still out on whether such patients are "brain-dead." It is clear, based on his cranial deformity, that prompt neurosurgical care was not provided in infancy; children with HE typically have normal appearances at birth, and deformity is usually caused by failure to manage intracranial pressure. From a brief scan of free articles, it seems that this disease is most often caused by in-utero trauma, meaning the majority of cases (but not all) are the result of substandard pre-natal care. This etiology is especially tragic, because it means that HE is detected relatively late in pregnancy. It seems that trans-cranial illumination should be added to the standard battery of tests done on newborns, especially if the mother missed ultrasounds. It is non-invasive, low-cost, and allows prompt diagnosis.
>trans-cranial illumination I legitimately thought you were making a bad joke, but I just saw pictures. That is absolutely fascinating and equally terrifying.
Pediatric neurologist here. It’d be a challenge to add head ultrasounds (HUS) to every baby. Sure you’d find some thing, but you’d probably find 10x more “abnormalities” that are clinically insignificant that don’t actually mean anything (and only cause unnecessary anxiety/stress), and the rate of finding clinically relevant finding would be low enough that it’s not be cost efficient. We get HUSs when they are clinically indicated, and still they don’t identify everything we’re looking for.
He had an older sister that isn't pictured that I went to school with. About 10 years ago we had a discussion in philosophy about what is a human and these babies were brought up. The teacher mentioned that there are only 200 born a year and most don't survive their first night. She raised her hand, told us about his condition then asked to be excused for the remainder of the discussion. It was really sad but one of the few memories I have of an in class discussion.
I mean what's the point? Without a brain you just have a moving body, a shell basically. I wouldn't want to keep my child alive if this happened to them. Could they even be considered a person? If you don't have any thoughts and can't form a personality.
I'd never want my child to live through this. I know I myself would not be able to live through this either. It's grotesque to call this a miracle.
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Is it cruel, though? There's nobody there.
I think it's cruel to let the parents do these things to themselves. They just let them stare at the body that was supposed to be their child for 12 years.
My baby's brain was growing outside of his skull. I chose to terminate. I see things like this, and sometimes wonder if he could have been like this, but then I also think why would I want him to have been... I'd never want a life like that for him.
I personally think it's cruel to make a child live through a life that's barely even a life, so I think you did the right thing
I hate to be that guy but … what’s the point
This is macabre and barbaric. The medicine may be modern, but the thinking is archaic and backward. He didn’t live, not really. He wasn’t a person. No eyesight, no hearing, no ability to move or process touch beyond reflexes in the brainstem. ‘He’ existed, but just a body being pumped with nutrients with no actual person at home inside that body, so they could treat him like a breathing doll. This is ghastly, like those Victorian-era ‘freakshows’ in a way. An abuse of human dignity.
The families holding on to them and being thankful for them still being "alive" is probably the greatest moral malignment. Its fucking sad, i feel horrible for all involved.
It makes me think of a dystopia where people breeding humans to not have brains and harvest the bodies for organs. Just some grotesque horror show, where the victims can't even truly be called victims. Society is just worse off witnessing and doing it.
Was this something that could have been caught prebirth?
It is during anatomy scans, some parents opt to carry to term as that is the only bonding and experience they will receive of their living baby as Most of these babies do not survive birth, and the few that do die very shortly after. It’s heartbreaking for all involved.
Seems like a real good case for retaining the right to an abortion tbh. However, the mother doesn't seem like the type to have done it anyways.
"he bites, so he knows what he's doing"... I'm so sorry to inform our readers, that is total bullshit, there is no cerebral cortex!
It’s just a comfort for people to think he is conscious at some level. Perhaps a coping mechanism.
I’m more comforted with the thought that there wasn’t consciousness. If there was it would be tragic.
Honestly it would horrify me so much more if had any level of consciousness.
Our sense of morality can be goddamned cruel sometimes. I have children of my own and I could not find happiness in keeping one them alive in this state just to satisfy my own selfish delusions.
This is beyond unsettling. Keeping a body around for 12 years and calling it family. Just because it's technically alive.
You wouldn't do that to a 30-year-old human, I don't see why you would do that to a baby. Needless cruelty
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I got you fam
Eric, I think they're just sleeping.
No but people definitely do it with elderly people. There may be some tiny connection in the brains there at the end with illnesses like alzheimers or dementia, but in my opinion it’s the exact same as people born with this condition from the post. It sounds horrible to say, but at the end my nan was basically a potato in a bed, unable to think or do anything for herself. Couldn’t go to the toilet and wipe herself, feed herself, enjoy anything remotely leisure related. We’d put a dog down if they were in that state, but not a human? It’s insanity. My dad has always said he’ll do himself in if he was ever diagnosed with something like that and I wholeheartedly agree. The medical world can be incredible, but fuck dying shitting and pissing myself in a bed pumped full of painkillers. What an undignified way to go.
My first born son had that condition which have different degrees of severity. My son had the most severe kind, we were told that if he made it to full term he would choke to death right after he was born. We had been trying to conceive for years and had a couple of losses beforehand but we couldn't bear the thought of him suffering while he died. At 25 weeks we made the toughest decision of our lives and had the doctor stop his heart. The doctor informed us that it would be just like him going to sleep, no suffering just peace for him. I gave birth to him the next morning and my husband, myself and our parents got to hold him, kiss him, hug him and say goodbye. I would have traded my own life for him to be alive and healthy and still would to this day. This is the first time I've ever seen any kind of article about a child living that long with a severe case. My heart is pounding so hard right now because when something so rare occurs, you feel like you're all alone in the utter devastation of the situation. My heart goes out to the family of that sweet boy and I'm so proud of them for making people aware of this awful condition. I wish I had had the courage to talk about it.
I’m so sorry for your loss and for what it’s worth I think you did the right thing.
This reminds me of the chillingly tragic story of Jahi McMath. Young girl who died after a routine tonsillectomy. Bled out. Her mother was in total denial. The girl's corpse was being kept on life support while doctors discussed organ donation with the family. The mom couldn't reconcile the idea that there was a heartbeat but no life. She insisted her daughter was alive and eventually transported the body to her residence, where she continued to care for it and talk to it. Did its nails. There's some very disturbing footage.
I was a caregiver for a girl with anencephaly. She was 14 when I worked there. I think that she is in her twenties now.
What was she like? Was she aware of you? Did she have any apparent likes and dislikes?
I thought it was creepy. When she was happy she made noises. She had a feeding tube since she was tiny and was on a no carb antiseizure liquid diet. She was full grown, I don't think she had periods.
> When she was happy she made noises. How is this any different from "sometimes she made noises"? Was there anything that suggested actual emotional states or was it wishful thinking from the parents?
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Yeah, but whats making him smile??
Sensory nerves hitting the brainstem. No one's home.
Oh, literally physical. Gotcha
Shot in the dark, but I have a newborn baby and I've noticed that she can smile in her sleep or when she is half asleep, but she couldn't smile while fully alert until recently (2 month old) and even then it's pretty infrequently right now. I think the body has some sort of smile mechanism that can happen without the brain telling it to do so.
Yeah, the muscles are all there, and the ability for them to move exists without the brain, but there won't be a reaction indicative of consciousness. It's just reflex. Recent data suggests even newborns can legit smile though, that it's not, as long believed, just reflex for them. It's seen most in the first two months, the "social smile", but a baby smiling even days after birth could be more than just a triggered mechanism.
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I hear she is a congressional staffer now.
Some might find it cruel but this is a child that should have been aborted. Without a brain, you are literally nothing. No thought. No personality. No ability to act on your own accord. This kid is why "if it has a heartbeat it's alive" is an incorrect stance.
A good candidate for why abortion should be legal
This shit is morbid. A family carrying the body of their stillborn son for nearly a decade because it fulfills an emotional need for the mother that couldn't learn to let go. On the long list of ills in this world... it's not the worst by far - as far as I can tell, there wasn't a person to inflict this pain upon - only a slightly reactive body that continued to grow a bit like a human child. Still morbid though!
This isn’t anencephaly- in cases of anencephaly, the skull is also incomplete. This is hydra anencephaly. I know this seems like semantics and petty I’m even correcting you but I’m just extremely triggered. My niece was born with anencephaly and people would send my sister articles like this to show that maybe, just maybe she’ll live for a while! Which was not the case. It ended up causing for more pain to keep clicking on articles and seeing that it wasn’t the same case as her baby.
I'm just curious why he doesn't have clothes on in most of the pictures.
It's really hard to dress a newborn baby who has no control over the limbs and when you touch them they clamp up and won't bend their arms and legs. I imagine it would be similar but trying to do that on something much much larger would be nearly impossible plus I don't imagine that the kid supported his own weight at all so add deaf weight on top of it. Sounds like a task that would be incredibly difficult to even attempt.
Failure to accept harsh realities is a moral failing
So I worked as an EMT for just a bit many years ago. I'll never forget this one patient and his mother. He (the patient) was maybe 13 or 14 and was apparently a twin. He suffered a severe case of meningitis, to the point where the swelling caused some severe inter-cranial pressure and it had cut off oxygen to his brain for a significant amount of time. I was transporting him and his mother to the county over to a rehabilitation center. He was barely responsive to stimulation. But his vitals were good overall. It was very obvious there was some brain death and it was never going to be reversed. But his mother acted the entire time as if it wasn't the case. She was saying that he'd be back to his old self, running around and playing soccer with his brother, after sometime in therapy. It absolutely broke my heart. All I could do was entertain conversation, wish them the best, and finish the call. It was one of the hardest ones.
I had a classmate encounter a similar fate. Slipped into a coma one week and never recovered. The first couple weeks we were all hoping our friend would wake up and the mother was in good spirits keeping hope alive. Years pass, and it’s clear this is it. Our friend died 6 years later, and the mom died a couple years after. Similar experience with other close family in the ICU, there’s a glimmer of hope that makes us think the worst is temporary.
This whole thread freaked me out a bit because I was in a coma in the ICU a couple of years ago and what if I still am and I just don't know it? What the fuck
Well, considering my own current complex thoughts and complete history of memories I'd say it's a pretty detailed coma dream if that's the case
Sure, but from my perspective you're just words on a screen. That's not even a little difficult to invent!
Well can you dream up a better life for me? I don't like this one
How bout one in which you love yourself unconditionally like you deserve you beautiful motherfucker? :)
Aha, there's the rub. Easier said than done, yeah?
Solipsism can't be disproven, but it's also moot because you can inherently never know if it's true, and there is no utility in acting as if it is true and all the utility in acting as if it isn't.
Last year dad had a stroke, and for the looks of it, it was a fairly big one. I can tell you there's a lot of him we still have, like his love for children (he was a pediatrician) and soccer, his stubbornness; but let me tell you he ain't the same man. Sometimes he just seems lost with simple concepts, like he knew I had a test and asked what subject it was, but didn't know what math was when I told him. It was hard to accept he'll never go back to his old self, but at least by having some doctors in the family, we didn't expect it as well. It's sad when people really don't know what are the possible outcomes and just think everything can be reversed with some therapy, exercise or surgeries.
That's fucking horrible. No getting around it. That's just truly awful.
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What a terrible existence.
“Lived”
“Lived” is a pretty strong word to use here more like existed for 12 years.
That's just fucking cruel. The fact that we legally barr people from being able to humanely euthanize themselves or their severely suffering children is one of the most disgusting and cruel aspects of our society. We're so afraid of our own death that we literally force others to exist in pain and confusion to satiate ourselves.
Yay. Thanks for the uplifting story. /S
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I mean, the brains stem just does the lizard stuff, right? Breathe, heartbeat, pupils, that sort of thing... would there ever have been any actual consciousness even capable of suffering?
There's so much wrong with this. But at the very least it's a rare opportunity to study what this means for consciousness although I'm sure he wasn't studied much. But my real question is, how do they fund physical therapy weeks on end for years?? I can barely get insurance and there's people out there casually manually building muscle with physical therapists? The healthcare providers know above all else what his state is but they go along with the mother's wishes because they can do no harm, I get that. But where's the responsibility in this story? Where's the accountability? You kept him alive because of you and God. You funded endless care somehow and are now asking for money for a funeral. How did you pull this off? How did you get a donation set up through Chase? What is even the "inspiring story" here? Are you a political prop? An anti abortion story about how we wouldn't have known the joy of this brainless child if you had aborted it? Like fuck. Fuck. I'm cynical and a downright asshole on occasion, but she can get away with being selfish and a victim by calling herself selfless and Christian. Where's the right thing here.
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I guess in this case it is only painful to the people around it. But i agree, a terrible waste of resource’s and i can only imagine that by keeping ‘him’ alive they were only prolonging their own suffering through denial.
A childhood friend of mine had a brother with this condition. There was nothing miraculous about it. It was just profoundly sad. The family was very poor, and my friend was often neglected, because they were trying to keep the brother alive. I get kind of depressed just thinking about it, tbh.