- Joined
- Feb 24, 2019
They would refer to it as snowing when i volunteered in a unit setting. Figured it was so families didn't know what it meant.
🤝 Community Tard Baby General (includes brain dead kids) - Fundies and their genetic Fuckups; Parents of corpses in denial
- Thread starter jurassic bark
- Start date
-
🐕 Changes are being made. Got a request? Shoot your shot.
💹 I am interested in growing the non-English section of the site. Discuss.
🖼️ Old attachments may be broken. I am rebuilding the local filesystem. They are not lost.
- Joined
- Feb 20, 2021
Double posting to avoid confusion.
I'm glad I'm not the only one who has been lurking this Instagram account. I've had the exact same thoughts about Amelie's brain activity or lack thereof. There are tons of photos of her with her eyes open, and there is just...nothing there. At some point, all of the interventions and procedures stop being something done "for" a child and become something done "to" her. I think Amelie passed that point a long time ago. The mom posts often about Amelie's "big brown eyes" and how "cute" she is, but...
I had felt like a complete asshole for even thinking any of this about that poor baby. I should have known that other Kiwis were thinking the same.
(To be clear, this is not a situation I'd wish on my worst enemy, and it's heartbreaking to contemplate. I just don't expect that her long term prognosis is that great. I casually follow two other 23 week micropreemies, one of whom has very severe bronchopulmonary dysplasia like Amelie, and miraculously, both of these other babies seem to be meeting appropriate milestones for their adjusted age.)
It's been described that way for a long time, as a slang term.
Back when I worked in a hospital pharmacy, not a day went by that I wouldn't see orders that said something like "Demise imminent; DC (discontinue) all medications. Morphine XYZmg IV q30min prn, Ativan ABCmg IV q30min prn. (PRN means pro re nata, or as needed.)
Dunkleosteus
kiwifarms.net
- Joined
- Feb 16, 2021
I do know of a boy born at 23+4. Had like 3 brain bleeds, nearly died like 10 times, his mother ended up with severe mastitis and ended up in the ICU as well.
His parents actually did decide to stop intervention, he had an infection and was given antibiotics and they basically said this'll be the last time they do this to him, they didn't want to put him through more than they already had.
He obviously pulled through and improved considerably from that point. He's like 8 now and while he's a bit slow and has shitty lungs (like a lot of micro premies) he could've turned out significantly worse. His parent haven't had more kids either, his early birth was caused by a problem his mother has and they don't want to risk it again.
I have heard boys tend to fair worse than girls in these situations, is there any truth to that Medikiwis? I figure it might just be skewed from a lot of X chromosome disorders affecting boys more but
.
His parents actually did decide to stop intervention, he had an infection and was given antibiotics and they basically said this'll be the last time they do this to him, they didn't want to put him through more than they already had.
He obviously pulled through and improved considerably from that point. He's like 8 now and while he's a bit slow and has shitty lungs (like a lot of micro premies) he could've turned out significantly worse. His parent haven't had more kids either, his early birth was caused by a problem his mother has and they don't want to risk it again.
I have heard boys tend to fair worse than girls in these situations, is there any truth to that Medikiwis? I figure it might just be skewed from a lot of X chromosome disorders affecting boys more but
.
- Joined
- Mar 23, 2021
Girls do better. And african american kids do better. It's a pretty robust finding but here's one example.I have heard boys tend to fair worse than girls in these situations, is there any truth to that Medikiwis? I figure it might just be skewed from a lot of X chromosome disorders affecting boys more but
- Joined
- Jun 21, 2021
Lord forgive me but he looks like a goomba from super Mario. Here’s hoping he finds peace soon.
A tree
kiwifarms.net
- Joined
- Jul 6, 2021
I sued and won. It paid out the day after my "rainbow baby" was born. I haven't shared this story on the farms and rarely share it anywhere because its too much for a lot of people to deal with.
- Joined
- Aug 4, 2020
In the hospitals I’ve worked for, we call it Wimpy White Boy syndrome. May seem insensitive or whatever, but newborn white males tend to do less worse as far as needing respiratory assistance than girls, especially those of color. A white male born at 37 weeks may inexplicably be on a cpap after birth, while a black female born at 32 weeks may be breathing completely on her own, and all of us in the unit wouldn’t be surprised.
雑音🐈
kiwifarms.net
- Joined
- Nov 28, 2017
Aren't male fetuses that have something go wrong with development also more likely to result in a miscarriage than female? I thought I read that somewhere, possibly in an article about anorexic moms, that female potato babies are more likely to be born than male ones purely because males don't make it to term.
This is yet another component of "more boys are born, but they are much more likely to die early in life than girls."
It's also another reason why conjoined twins that live long enough in utero to have a chance of being born alive are usually female (70%)
It's also another reason why conjoined twins that live long enough in utero to have a chance of being born alive are usually female (70%)
A Detachable Penis
kiwifarms.net
- Joined
- Nov 12, 2018
One reason why males have worse outcomes is that they have only one X chromosome. Every other chromosomal monosomy is fatal except this one because 1. Gene dosage and 2. Having at least one fatal allele on one chromosome is very likely, so two is necessary to make up for it.
Evolution be dumb sometimes.
Evolution be dumb sometimes.
- Joined
- Dec 29, 2014
Eh, one male can sire a hell of a lot more offspring in a lifetime than a female can carry, so it's honestly not surprising females are the more robust sex- not that it matters if they're a potato. Or at all, given how plenty of people now opt not to have children, in part due to the risk of having a complication such as a potato. We might benefit from female robustness at birth but failed pretty miserably to evolve safer pregnancies and births after evolving larger brains; compared to other mammals, our pregnancies are ticking time bombs. If you like your own life more than children, fuck that shit, get a dog or some house plants.
We use our larger brains to short-cut evolution with medical science, but as has been mentioned, we've reached a bizarre point where we can keep near- and total-corpses "alive" and now doctors have to tell the families of pts to let them die instead of letting them try to save them sometimes, so we've really only added to the list of crap that can go wrong with reproduction instead of reducing it as intended. It was better when a fatal deformity was just that, fatal- parents faced a trauma, but with only one outcome. Now they get the added stress and trauma of wondering if they made the right choice, regardless of which choice they made.
Even some of our grifters seem to wrestle with that once in a while, but they double down instead of backing off treatments, because they are fucked up. Too bad behavioral pathology of these people will likely never be studied.
I just sent this link to the person who started this GFM. If any organization could help him, it's them.
FACES: The National Craniofacial Association | United States
FACES: The National Craniofacial Association is a non-profit organization serving children and adults throughout the United States with severe craniofacial deformities resulting from birth defects, injuries, or disease.
www.faces-cranio.org
bigfart420666
kiwifarms.net
- Joined
- Apr 29, 2020
i stumbled across this page tn, mom has 2 downies, but one seems much worse off. from what i can tell the girl is adopted and clearly her favorite. the much more severely disabled boy isn’t shown or talked about much unless in pics w the girl. what i want to know, you guys think the boy is alert at all? there’s a few videos of him he seems like he’s definitely not in there but who knows. also how are they ALWAYS AT DISNEY??? does this mom use her make a wish kids and go every damn weekend or what?
www.instagram.com
and now this mf just gets harder and harder to look at as time goes on. them spazz ass movements in the beginning just. sent me. to hell.
and them hands also send me there.
why do moms of these things insist on showing them off?
god bless this mom for being able to handle this shit cuz lord knowssssssssss i don’t have it in me
www.instagram.com
Login • Instagram
Welcome back to Instagram. Sign in to check out what your friends, family & interests have been capturing & sharing around the world.
www.instagram.com
and now this mf just gets harder and harder to look at as time goes on. them spazz ass movements in the beginning just. sent me. to hell.
and them hands also send me there.
why do moms of these things insist on showing them off?
god bless this mom for being able to handle this shit cuz lord knowssssssssss i don’t have it in me
Login • Instagram
Welcome back to Instagram. Sign in to check out what your friends, family & interests have been capturing & sharing around the world.
www.instagram.com
Last edited by a moderator:
- Joined
- Feb 24, 2019
She's been doing that for years found her off reese's rainbow back in the early 2010s. The boy has a lot more issues then down syndrome:
http://jaxsonsfight.blogspot.com/p/jaxsons-story.html
Jaxson was born November 20, 2005. After a difficult pregnancy, he came into the world screaming! As soon as they layed my baby on my chest, I knew he was different. They let me hold him only for a second, because they said he was having respiratory problems. As I held him I mentioned that he looked "Downs". After the nurses took him away I looked at Ray and told him I thought he had Down syndrome. His response was ok, lets do this!
I don't know why, but neither of us went through the grieving period. Not even when we found out he had a serious heart defect. I don't know if its because I worked in the childrens hospital. I knew what the heart defect was, and I had taken care of many DS kids that had it repaired. We just jumped right in to parent mode once again. He was transferred to the childrens hospital for further care the day after he was born. There he was officially diagnosed with AV canal, PDA, and pulmonary hypertension.
He only spent 9 days in the NICU. By far our easiest hospital stay. He had major respiratory issues because his heart was mixing so much blood. But he managed to get through his first Christmas at home.
January and February both he spent time in the hospital for respiratory distress. In March, we hurried to California to get in a trip to Disneyland before his heart surgery.
Days after we returned for our trip, in April, 2006, again he was admitted for respiratory distress. This time it continued to get worse for a week until he was rushed to the PICU and intubated for respiratory and heart failure. Everything just went downhill from then on out!
He had a heart cath where they tried to close his PDA without success. We tried to get his heart surgery scheduled, but it was cancelled twice because he would get infections. It was a vicious cycle. He couldn't get out of the PICU until his heart was repaired. But being in the PICU with so many lines meant constant infections. They decided to do a less invasive heart surgery and close his PDA in early May. 3 days after surgery he suffered a hypoxic brain injury from the staff letting his glucose bottom out to 0 and his temp rise to 108!
We were told his brain damage was severe, and we should probably just take him off life support. We refused! We could see our baby in his eyes and movements, and we weren't giving up on him! We demanded the head heart surgeon, and he took over Jax care. He did a heart surgery to try and close some leaky ducts in his chest, causing fluid to be in his lungs. After the surgery and with some aggressive treatments on his lungs, we were able to get him off the vent and onto bi-pap to wait for his brain to heal enough to have his heart repaired.
10 days after being on bi-pap, he had his full heart repair on July 18, 2006.
Because of his sick lungs, he remained on the vent for 10 days after surgery. But slowly he finally started to improve!
Jaxson finally went home on August 7, 2006, after 4 months in the PICU. He had been intubated for 3 1/2 months, had 4 surgeries, over 200 procedures, and suffered a deadly brain injury. But he was home, and we rejoiced every day we had with our warrior!
Over the next few months he had a few surgeries and hospital stays. But the biggest thing was the seizures started. They slowly got worse and worse, and we tried med after med. They were coming from every part of his brain, because his whole brain had been damaged. We were slowly losing our baby once again.
In January, 2008, he went into status, or constant seizing. They tried all the big gun meds, but even propofol didn't work!
We had to put Jaxson in to a coma, and totally stop all of his brain activity. Once it was stopped, they would slowly wake him back up and hope the seizures had stopped. But because you are stopping all brain activity, his systems all started shutting down. He blew up like a balloon, and they were unable to get his lungs the oxygen they needed. Once again we thought we were saying goodbye to our warrior boy.
But again he pulled through! The status stopped, although he continued to have seizures, and still didn't gain any strides in his developments. He was still like a newborn baby.
October 2008 he was admitted for fluid in both lungs. He ended up with two chest tubes, and they thought he had gone back into status. That was when we found his clotting disorder. They tried to put a picc line in his left arm, and found a huge clot! They scanned his chest and found that he had clotted off all of his major veins in his chest! He was diagnosed with antiphospholipid antibody syndrome, and will require blood thinner shots for the rest of his life. After this hospital stay was when I started my blog.
After starting this blog we met so many wonderful people, and made some great friendships! He had many more hospital stays for small surgeries and respiratory viruses. But we also made many trips to visit friends!
In 2009 he started having severe respiratory distress problems. Because of all the veins he clotted off, he pulmonary pressures were rising fast! We finally decided to trach Jax in October 2009. Probably one of the hardest decisions I had to make for him!
Even after he was trached, he still continued to have respiratory problems. We knew that his lungs were severely scarred, but this was something more. In August 2010 he had respiratory and heart failure and ended up in the PICU fighting for his life once again.
That was when they finally started him on pulmonary hypertension meds, and put him on the ventilator at night when he sleeps.
Right now Jaxson is still having severe lung problems, we are now looking out of state for treatment and perhaps a new diagnosis.
Developmentally he is making small steps forward. He is finally smiling again, he rolls over frequently, and he is starting to grab things in his hands. We will continue to help him fight, and have as much fun as possible along the way!
I don't know why, but neither of us went through the grieving period. Not even when we found out he had a serious heart defect. I don't know if its because I worked in the childrens hospital. I knew what the heart defect was, and I had taken care of many DS kids that had it repaired. We just jumped right in to parent mode once again. He was transferred to the childrens hospital for further care the day after he was born. There he was officially diagnosed with AV canal, PDA, and pulmonary hypertension.
He only spent 9 days in the NICU. By far our easiest hospital stay. He had major respiratory issues because his heart was mixing so much blood. But he managed to get through his first Christmas at home.
January and February both he spent time in the hospital for respiratory distress. In March, we hurried to California to get in a trip to Disneyland before his heart surgery.
Days after we returned for our trip, in April, 2006, again he was admitted for respiratory distress. This time it continued to get worse for a week until he was rushed to the PICU and intubated for respiratory and heart failure. Everything just went downhill from then on out!
He had a heart cath where they tried to close his PDA without success. We tried to get his heart surgery scheduled, but it was cancelled twice because he would get infections. It was a vicious cycle. He couldn't get out of the PICU until his heart was repaired. But being in the PICU with so many lines meant constant infections. They decided to do a less invasive heart surgery and close his PDA in early May. 3 days after surgery he suffered a hypoxic brain injury from the staff letting his glucose bottom out to 0 and his temp rise to 108!
We were told his brain damage was severe, and we should probably just take him off life support. We refused! We could see our baby in his eyes and movements, and we weren't giving up on him! We demanded the head heart surgeon, and he took over Jax care. He did a heart surgery to try and close some leaky ducts in his chest, causing fluid to be in his lungs. After the surgery and with some aggressive treatments on his lungs, we were able to get him off the vent and onto bi-pap to wait for his brain to heal enough to have his heart repaired.
10 days after being on bi-pap, he had his full heart repair on July 18, 2006.
Because of his sick lungs, he remained on the vent for 10 days after surgery. But slowly he finally started to improve!
Jaxson finally went home on August 7, 2006, after 4 months in the PICU. He had been intubated for 3 1/2 months, had 4 surgeries, over 200 procedures, and suffered a deadly brain injury. But he was home, and we rejoiced every day we had with our warrior!
Over the next few months he had a few surgeries and hospital stays. But the biggest thing was the seizures started. They slowly got worse and worse, and we tried med after med. They were coming from every part of his brain, because his whole brain had been damaged. We were slowly losing our baby once again.
In January, 2008, he went into status, or constant seizing. They tried all the big gun meds, but even propofol didn't work!
We had to put Jaxson in to a coma, and totally stop all of his brain activity. Once it was stopped, they would slowly wake him back up and hope the seizures had stopped. But because you are stopping all brain activity, his systems all started shutting down. He blew up like a balloon, and they were unable to get his lungs the oxygen they needed. Once again we thought we were saying goodbye to our warrior boy.
But again he pulled through! The status stopped, although he continued to have seizures, and still didn't gain any strides in his developments. He was still like a newborn baby.
October 2008 he was admitted for fluid in both lungs. He ended up with two chest tubes, and they thought he had gone back into status. That was when we found his clotting disorder. They tried to put a picc line in his left arm, and found a huge clot! They scanned his chest and found that he had clotted off all of his major veins in his chest! He was diagnosed with antiphospholipid antibody syndrome, and will require blood thinner shots for the rest of his life. After this hospital stay was when I started my blog.
After starting this blog we met so many wonderful people, and made some great friendships! He had many more hospital stays for small surgeries and respiratory viruses. But we also made many trips to visit friends!
In 2009 he started having severe respiratory distress problems. Because of all the veins he clotted off, he pulmonary pressures were rising fast! We finally decided to trach Jax in October 2009. Probably one of the hardest decisions I had to make for him!
Even after he was trached, he still continued to have respiratory problems. We knew that his lungs were severely scarred, but this was something more. In August 2010 he had respiratory and heart failure and ended up in the PICU fighting for his life once again.
That was when they finally started him on pulmonary hypertension meds, and put him on the ventilator at night when he sleeps.
Right now Jaxson is still having severe lung problems, we are now looking out of state for treatment and perhaps a new diagnosis.
Developmentally he is making small steps forward. He is finally smiling again, he rolls over frequently, and he is starting to grab things in his hands. We will continue to help him fight, and have as much fun as possible along the way!
Login • Instagram
Welcome back to Instagram. Sign in to check out what your friends, family & interests have been capturing & sharing around the world.
and now this mf just gets harder and harder to look at as time goes on. them spazz ass movements in the beginning just. sent me. to hell.
and them hands also send me there.
why do moms of these things insist on showing them off?
god bless this mom for being able to handle this shit cuz lord knowssssssssss i don’t have it in me
Login • Instagram
Welcome back to Instagram. Sign in to check out what your friends, family & interests have been capturing & sharing around the world.
The child in the 2nd has thanatropic dwarfism and appears to be happy and able to do things. PrayersforPaisley has that as well, but is NOT anywhere near his abilities.
A tree
kiwifarms.net
- Joined
- Jul 6, 2021
My god that Downie boy has been through medical hell. What a life. Is that even a life?
- Joined
- Feb 3, 2021
At what point does subjecting a child to over 200 procedures and multiple fruitless surgeries become abuse or torture? I'm surprised anyone decided to operate on him that many goddamn times, along with how the hell his parents thought any of that was going to fix their spud. I am a bit curious about how the family affords all the bills and their trips to Disney... Disability checks?
TheCakeIsALie
kiwifarms.net
- Joined
- Jun 15, 2016
and now this mf just gets harder and harder to look at as time goes on. them spazz ass movements in the beginning just. sent me. to hell.
and them hands also send me there.
why do moms of these things insist on showing them off?
god bless this mom for being able to handle this shit cuz lord knowssssssssss i don’t have it in me
Login • Instagram
Welcome back to Instagram. Sign in to check out what your friends, family & interests have been capturing & sharing around the world.
Eh, the mom is a Christian fundie and I’d say Samuel isn’t a typical case of TD so I don’t know if he is worth talking about. He doesn’t look to be in agony unlike Paisley, who looks miserable in every photo. He’s happy, well cared for, and is sentient and can at least communicate, albeit in his own way.
- Joined
- Feb 24, 2019
She may get a stipend for the child she adopted some states you get a monthly payment for adopting a disabled child on top of their disability.
That mother also when she was denied services actually worked with and helped her child gain abilities to sit unassisted, etc.
Paisley's mother just lets her lay there and does nothing to make her move her arms or legs. She calls putting her on her side "mobility training" instead of the normal movements to stop sores and such.
- Joined
- Feb 20, 2021
Oh my god, that poor child. Just let him die already; he clearly wants to.
Ultimately, I think situations like this arise because many "warrior mama" types do not actually view their severely disabled children as human beings. If they did, it would be far more difficult for them to justify all of the heroic measures and invasive procedures. It's not so ethically uncomfortable if you are just manipulating an object, not torturing a kid who wants to die. For all of their reeee-ing about inclusivity and the R word, I really don't believe that many of them actually think about their kids as humans.
Of course, there are tons of exceptions, but in my opinion, there's a particular type of Very Online Instagram Mama who seem more likely to be like this. Amelie's mom, discussed earlier, is one. This woman is another, as is noted empath Robyn.