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Mother shares story of son’s rare disease, hopes to alert other parents

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MOSS BLUFF, La. – A mother is sharing the story of her son’s rare disease in hopes that it sheds light on the life-threatening liver condition affecting 1 in 10,000 babies.

Looking at 15-month-old Asher, you wouldn’t know just how different he is from the other 1-year-olds.

The only external sign of a medical condition that made him sick shows on his face, where he has scratched his skin that itches intensely.

Asher’s mom, Shayla, is a registered nurse, a role that she plays out at home everyday.

When she was pregnant with Asher, a cyst was found on his liver at his 20 week ultrasound.

That was the only red flag.

When Asher was born, the 8 pound, 10 ounce baby boy seemed healthy.

But as the first two months of Asher’s life played out, he was not growing like a baby should.

“He was jaundiced. He had the pale colored poo. He was losing weight. He was starving all the time,” Shayla remembered.

Shayla’s family was very concerned and took Asher to the hospital when his skin turned yellow.

“They did blood work. Everything came back abnormal. All of his labs were through the roof,” she said.

The baby was rushed to Texas Children’s Hospital where he was diagnosed with biliary atresia.

The disease affects the bile ducts in the liver.

Babies with this condition have bile build up in the liver, causing liver disease.

“That’s why he was losing weight, that’s why he was yellow, because the bile had no way to get out of the liver and it was backing up and his whole body was toxic with it, basically,” Shayla said.

The bile build up scarred and damaged Asher’s liver.

He underwent the only surgical treatment for biliary atresia to reconstruct the bile ducts and restore bile flow.

While Asher’s condition is under control today, he will need a liver transplant one day.

“His doctors have told me to keep an eye out for any kind of vomiting, blood, or passing blood in his stool and when that happens he will be listed at that time,” Shayla said.

Shayla says she hopes his story will alert other parents to the signs she missed.

“I missed every sign and because of that, his liver was severely damaged. It’s not common, but I feel like it’s common enough to where people should know about it, they should know the signs,” she said.

The cause of biliary atresia is unknown.

Symptoms usually appear between two to six weeks after birth and include yellowing of the skin and eyes, swollen abdomen, light colored stools, and itching.

 

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