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

everybody in Portugal said:
Yeah but 3D-printed tracheas in particular are not a good example of how useful that technology could potentially be. The whole scandal is horrifying and well worth reading more into if you are interested.

Paolo Macciarini is a transplant-specific Menege/Gallagher/Rumer type, much more interested in pushing the boundaries of the surgery than he is concerned with pt wellbeing. The Karolinska were involves and ended up caugh up in — here is his Wikipedia as a very basic primer.

There are a couple of great documentaries out there too for further info. I've not seen the Apple TV one but it's meant to be p good.

sneak edit: the 3D printing was not necessarily the only issue with these surgeries, the trachea models they used were 'seeded' with the pts own stem cells. I'm not enough of a sciencefag to know, but I think it was the constructions themselves and not the stem cells that were thought to be the issue though.
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Powerlevel: I'm in the Midwest, and had heard about some major medical centers doing something similar. It looks like they've gone back to using human tissue after this 3D stuff didn't work so well.

All I'm going to say about Ja'Bari is that he looks like he's completely miserable.
 
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AnOminous said:
Unless there's something right with their brain and it's the human version of apoptosis to turn yourself the fuck off if you're in that bad a shape.
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I think that's the case, whether or not they have any awareness of it.

The trisomy kids I mentioned need to be resuscitated every time they go on a long breath holding spell, so I assume they have enough damage that their brain doesn't work like most peoples.,
 
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booklover said:
He appears to have a Hispanic mother, and if the father's not in the picture, betcha he's black.
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The father is indeed black.
420efb6c-8923-4370-aab0-41cfbd7b803a-large16x9_IMG_2834.jpegjabari-gray-3-5a70d6e7783344188582c3b1e4e955cb.jpg
I find it extremely distressing that the poor baby hasn't grown in size and remains as big as he was at 11 months. The family seems delusional to his condition but they at least appear to be keeping him comfortable and dont parade him around as much as other potato parents.
 
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SpiceyHuman said:
The father is indeed black.
View attachment 4422504View attachment 4422516
I find it extremely distressing that the poor baby hasn't grown in size and remains as big as he was at 11 months. The family seems delusional to his condition but they at least appear to be keeping him comfortable and dont parade him around as much as other potato parents.
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I assume he has some type of dwarfism along with the skin issue. But his aplasia cutis is of unknown origin. So he isn't diagnosed with any syndrome.

Here's an article. His eyelids have fused shut after several surgeries to open them. At one point his chin fused to his chest. Doctors wanted to remove him from life support but the mother had him moved to another facility. There are two older siblings.

https://www.today.com/health/baby-born-without-skin-texas-be-released-hospital-t164472

Almost a year after Ja’bari Gray arrived into the world without skin in most places on his tiny body, he’s finally home.

The baby has healed well with the help of lab-grown skin grafts and was released from Texas Children’s Hospital in Houston on Nov. 13.

Though he still has more surgeries ahead of him, his mother Priscilla Maldonado described his condition as "perfect" and said it was amazing to have him home.

"I'm overwhelmed with happiness," Maldonado, 25, who lives in Houston, told TODAY. "Everything is going fine. It's working out a lot better than I expected."

Ja’bari was supposed to be released from the hospital in October, but doctors decided to delay his discharge until he was completely weaned off pain medication, Maldonado said.

A team of multidisciplinary experts including plastic surgeons, otolaryngologists, ophthalmologists, neonatologists, critical care physicians and dermatologists have been working together to care for the baby's complex needs, said Lindsey Fox, a spokeswoman for Texas Children's Hospital.

"Though Ja'bari will require additional care in the future, we are glad he is able to go home with his family," she noted in a statement. The hospital declined to make a doctor available for an interview.

Maldonado has finally been enjoying bonding experiences most new moms get to experience right after birth: skin-to-skin contact, cuddles and kisses. Last week, the baby enjoyed his first "official" bath in a little tub after months of sponge baths at the hospital.

Ja’bari seems really happy when his mom holds him, making contented cooing noises, she added.

Before coming home this month, the baby had spent his entire life so far in the neonatal intensive care unit.

There were serious doubts whether the boy would survive, but he has grown from 3 pounds at birth to 17 pounds now and seems to be living up to his name, which means “fighter” or “valiant” in Swahili.

Ja’bari was born in San Antonio, Texas, on Jan. 1, 2019, via an emergency cesarean section at 37 weeks into Maldonado’s pregnancy. An ultrasound showed he wasn't gaining weight and his heart rate was dropping.

Maldonado, who has two other children, remembers it was eerily quiet during the delivery and she didn't hear a baby cry.

When she was finally able to get a glimpse of the boy in the NICU later that day, Ja’bari was covered in dressings to keep his body protected and moisturized. He had skin on his head, face and parts of his legs, but it was missing in many other places on his body, including his chest, back, shoulders and arms.

“It was just red. Bright red,” Maldonado recalled of seeing his uncovered flesh when she talked with TODAY in July. “You could see all his veins (through it), everything was exposed.”

He required a breathing tube, pain medication and complex care. His eyes were fused shut and, over time, his chin fused to his chest.

Doctors in San Antonio wanted to disconnect him from life support, Maldonado said, but she fought to have him transferred to another facility. Texas Children’s Hospital in Houston was the only one that would take him, she noted.

Ja’bari was transferred there in April. In May, special skin grafts were applied to the baby’s body. The sheets of skin were grown by a biopharmaceutical company in Massachusetts, the San Antonio Express-News reported. Cells from a biopsy of skin behind the baby’s ear were sent to the company and then grown in a lab, Maldonado said. Doctors then covered his neck, chest, back and right arm with the grafts.

“They used 12 trays (of skin),” she noted.

The surgery was a success and Ja’bari is now 100% covered with skin, Maldonado said. The grafts have completely healed and he has been breathing on his own since his breathing tube was removed in September. He continues to be fed via a gastrostomy tube in his stomach. Medicaid is covering the baby's medical bills.


The G-tube is the only additional care he needs — otherwise, it's like caring for a typical baby, Maldonado noted. She received training at the hospital on how to clean the feeding tube and how to put it back in if it comes out.

The baby’s condition is called aplasia cutis, a term that simply describes the absence of skin, but doctors still don’t know what caused it, Maldonado said.

Ja’bari will have to have more surgeries on his arms, his right hand and right foot. His eyelids have fused shut again after two surgeries to open them, so they may require another procedure. But none of the problems are life-threatening, so Maldonado has been more optimistic about his recovery.

“It feels like having a baby all over again — actually being able to take the baby home,” she said. “It’s like a dream come true, finally.”
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Of course the Mexican benny sucker has to demonize the US medical system for wanting to stop his life support and minimizes his health problems. As if they were considering it just to be mean. It's cool that they made custom skin grafts, but who knows if it will be self-sustaining for life like normal skin.
Cute he can coo though, hopefully he experiences some joy in life.
 
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She also seems to think that if they just open his eyelids he’ll be able to see…but I’m pretty sure that deprivation of visual stimuli during critical window of development means his visual cortex won’t have developed and he’ll always be blind or close to blind. The structure of the eyes might be intact but the brain won’t be able to read the signals.

she uses the term “delayed” as though she fully believes he’s just temporarily behind his peers until they can correct his Cronenbergian body-horror, and then he’ll finally ✨thrive✨
 
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GainsGoblin said:
She also seems to think that if they just open his eyelids he’ll be able to see…but I’m pretty sure that deprivation of visual stimuli during critical window of development means his visual cortex won’t have developed and he’ll always be blind or close to blind. The structure of the eyes might be intact but the brain won’t be able to read the signals.

she uses the term “delayed” as though she fully believes he’s just temporarily behind his peers until they can correct his Cronenbergian body-horror, and then he’ll finally ✨thrive✨
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Very coolly, nope! Turns out curing congenital blindness can result in decent vision. Since Ja’bari should have normal eyes under the skin, and it’s just thin skin, his results should be similar to these kids — https://www.science.org/content/art...lind-people-sight-illuminates-brain-s-secrets — somewhere between excellent and awful.

Yadav's experiences are typical. "I can read newspaper headlines with my glasses," he says. But 4 years since his surgery, he still has trouble reading the finer print in newspapers and books.
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GainsGoblin said:
She also seems to think that if they just open his eyelids he’ll be able to see…but I’m pretty sure that deprivation of visual stimuli during critical window of development means his visual cortex won’t have developed and he’ll always be blind or close to blind. The structure of the eyes might be intact but the brain won’t be able to read the signals.

she uses the term “delayed” as though she fully believes he’s just temporarily behind his peers until they can correct his Cronenbergian body-horror, and then he’ll finally ✨thrive✨
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That's such a common thread with these moms. The delusion is so strong to believe they're just one surgery or just one medical miracle away from their child being 100% fully functional and normal. The same thing happens with babies who grow up with constant ear infections that clog their ears with fluid and prevent them from hearing anything but garbled noises. Even when they grow out of it or get proper treatment, they end up with speech delays that can last years. It's even worse for visual impairments. It's not like getting glasses. You might recover and regain use of whatever you lost over time, but being 100% normal and functional? Forget it. Those early years can never be replicated.
 
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Oracular Slug said:
Very coolly, nope! Turns out curing congenital blindness can result in decent vision. Since Ja’bari should have normal eyes under the skin, and it’s just thin skin, his results should be similar to these kids — https://www.science.org/content/art...lind-people-sight-illuminates-brain-s-secrets — somewhere between excellent and awful.
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Oh wow that is really neat, thanks for sharing. Didn’t realize the visual cortex was that plastic.

Kid is still fucked in every other way, though.
 
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People who have Fraser syndrome, who survive birth anyway (does not often happen) have sealed eyelids. There are people who have had this surgically corrected, and had normal eyes underneath.

Fraser syndrome - About the Disease - Genetic and Rare Diseases Information Center

Find symptoms and other information about Fraser syndrome.
rarediseases.info.nih.gov rarediseases.info.nih.gov

The oldest known person with this condition died at the age of (are you ready for this?) 96. She never got a correct diagnosis until a couple years before she died, and had been raised in a school for the blind and later lived in a group home, where she, in her 70s, married a fellow resident. I realize there are ways to be intimate without intercourse, and they would have had to use those because she did not have a uterus or vagina. Anyway, she also had normal intelligence and had been widowed a few years before the interview. The original story had photographs.

academic.oup.com

Fraser syndrome in a 96-year-old female

Abstract. Fraser syndrome is an autosomal recessive disorder in which the life expectancy is <1 year. The main features are cryptophthalmos, ear, nose and sk
academic.oup.com academic.oup.com
 
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booklover said:
People who have Fraser syndrome, who survive birth anyway (does not often happen) have sealed eyelids. There are people who have had this surgically corrected, and had normal eyes underneath.

Fraser syndrome - About the Disease - Genetic and Rare Diseases Information Center

Find symptoms and other information about Fraser syndrome.
rarediseases.info.nih.gov rarediseases.info.nih.gov

The oldest known person with this condition died at the age of (are you ready for this?) 96. She never got a correct diagnosis until a couple years before she died, and had been raised in a school for the blind and later lived in a group home, where she, in her 70s, married a fellow resident. I realize there are ways to be intimate without intercourse, and they would have had to use those because she did not have a uterus or vagina. Anyway, she also had normal intelligence and had been widowed a few years before the interview. The original story had photographs.

academic.oup.com

Fraser syndrome in a 96-year-old female

Abstract. Fraser syndrome is an autosomal recessive disorder in which the life expectancy is <1 year. The main features are cryptophthalmos, ear, nose and sk
academic.oup.com academic.oup.com
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source

The PDF at the end of your link has photos from the autopsy. I appreciate that they called it a "Donald Duck" voice.
 
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