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Sue sue

Take 6
Priscilla Maldonado was expecting a healthy baby but when her child was born on 01/01/19 the room fell silent. Little Ja'bari Gray had no skin on the lower part of his body.
The disease is so rare the doctors don’t know how to treat it.
The family is asking for help for medical expenses and funeral cost since his prognosis is grave.

 
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Someone posted in the comments on the GoFundMe page that her baby was born with the same syndrome last year, and has survived and the skin has regrown. She showed before and after pics. Hopefully the same can happen for little Ja'bari.

Krystalyn
24 mins ago
My daughter was born with the same thing in November she only had 30 % of her skin she was flown to Seattle children's and they treated her as a burn victim.. She is doing great now she is 4 months old and is home now her skin healed on its own it was a miracle.. I didn't have anyone when I was going through this so if I could offer you any support or anything I'm here for you. I pray your baby heals like my Emma did. I saw your story on the news and just had to find you. God be with your baby. I put before and after or pictures to give you some hope. If God healed my baby he will do the same for you! Keep the faith and don't let them tell you he will be like that forever. Prayers to you
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From my own personal experience I know that most cops are assholes, but I respect them because they find missing kids and have to do stuff like tell people that their child is dead because they wrapped their overpowered sports-car around a tree at 3am.

I also know that most doctors are conceited, arrogant, condescending bitches, but I respect them because they have to deal with shit like this.

I can't imagine what it's like to be presented with a case like this and being told 'If you can't fix it, this child dies'.
 
Babies and young children have amazing abilities to regrow things. But... JTFC! I searched for images of aplasia cutis. There's patches that regenerate or fix themselves, and then there is no skin below the neck.
Anyone who remembers 7th grade health class knows that the largest organ on the human body is skin. That's a helluva fix.
GRIM
 
San Antonio baby born without skin denied transfer, family says http://va.topbuzz.com/s/wyRpFN

The family of 3-month-old Ja'bari Gray said insurance denied a transfer to The Texas Children's Hospital in Houston that could help save his life. His mom, Priscilla Maldonado, says she was told that TCH doctors could treat his rare skin condition called Aplasia Cutis.

"Lost, confused, hurt, you know, it's a child's life that's on the line. It should be no questions asked. It should be approved how it is," said Maldonado.

She says the insurance company told her she was 'out of network' and they would not be able to cover the baby's transfer and stay.
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I doubt the baby that lived through it was also 3 pounds at birth and couldn't breathe. Doesn't sound like the baby is viable.

Also, they got $12k from the Go Fund Me. If it's really that important to the parents to attempt to at least partially fix the baby, why not use that money? Only money from insurance is acceptable?
 
I doubt the baby that lived through it was also 3 pounds at birth and couldn't breathe. Doesn't sound like the baby is viable.

Also, they got $12k from the Go Fund Me. If it's really that important to the parents to attempt to at least partially fix the baby, why not use that money? Only money from insurance is acceptable?
12,000.00 wouldn't pay for the first day of treatment. Deductible can be as high as 7,000.00 alone. Insurance is something you have until you cross the insurance company's cost/benefit assessment, and the only benefit under their consideration is their own.
 
12,000.00 wouldn't pay for the first day of treatment. Deductible can be as high as 7,000.00 alone. Insurance is something you have until you cross the insurance company's cost/benefit assessment, and the only benefit under their consideration is their own.

I can understand the cost benefit issue, but if it really costs THAT much it seems like it's a terrible idea for them to cover it because that is an insane cost for a lost cause. The cost of attempting to save a baby that isn't even viable wouldn't cost the company money, it costs all the other insurance subscribers money. It's not right, but that is how it currently works (which is a whole other horrible issue).

The baby is not even breathing on its own, the baby needs a machine for basic life function, so I personally don't think it is worth making the other people on insurance pay for a wild shot in the dark.
 
When the baby was born the mother acknowledged that he was in great pain and suffering. Now she wants enormous sums of money spent to prolong it.
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It's not right, but that is how it currently works (which is a whole other horrible issue).
That is how insurance works. It is not horrible, it is an overall benefit. Insurance is all about risk assessment. And making money on risk assessment.
 
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I doubt the baby that lived through it was also 3 pounds at birth and couldn't breathe. Doesn't sound like the baby is viable.
There are pictures of him at the gofundme link. It's not just skin thats missing. His whole body is not fully formed. His eyes are still fused shut, his hands are fused and it doesn't appear like his neck area formed proper. He cannot breathe on his own. He doesn't even have a mouth.

Maybe an unpopular opinion but if it was me I'd pull the plug. Not for financial reasons but because he'd be in extreme pain(and they've told her as much already) and realistically what kind of a life would he ever have even if he survived? I wouldn't want to watch my child suffer like that.
 
@Sue sue It was Medicaid that denied her.
Just one day after Medicaid denied a potentially life-saving medical transfer for a baby born without skin, the family of baby Ja'bari Gray says the insurance provider has decided to approve it.

According to family members, Medicaid and hospital officials were inundated with complaints following our story about the three-month-old child.

Medicaid had previously denied a medical transfer that would send Ja'bari to the Texas Children's Hospital in Houston for a treatment that could save his life.

"Lost, confused, hurt, you know, it's a child's life that's on the line. It should be no questions asked. It should be approved how it is," mom Priscilla Maldonado said on Thursday.


She says the insurance company told her she was 'out of network' and they would not be able to cover the baby's transfer and stay.

"From day one, they said he had no chance of surviving and I would hate to give up or everybody else to give up on him when he's made it this far in life," said Maldonado.

Gray was born Jan. 1, 2019 without skin from the neck down and a severely damaged airway. Maldonado has now filed to change her insurance.

"They don’t know how to treat it," Maldonado said. "They’re treating it as burns."

@Muriel Schwenck @spiff @McDanel @Nell
 
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So Medicaid caves on a decision if people read a news item and complain? Weird.

Also, the mom's updates on the GoFundMe indicates she is of pretty low intelligence. She could not even tell what her baby's heart rate and oxygen level were while sitting in the hospital next to the monitor. If this baby survives and comes home, how will she possibly be able to care for him? I would assume his care, if he lives, will be complex.

Also, after checking out all the new photos on the GoFundMe, I have to say this child is far more damaged and disabled than I originally thought. The damage is not just his skin, it is profound. He has significant deformities. What kind of life would he have if he survives?
 
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