ATLANTA (FOX 5 Atlanta) – Child health care from the Atlanta delivery specialist Dr. Saul Karpen remembers Julia Navarro's little belly and knew what she and her parents were up to. Karpen carefully chose his words back in November 2017.
"I try to give small pieces of information because I think its totality is so difficult," Dr. Carp. "But I think they got it great and said," Okay, what should we do? "
Analy and Jose Navarro & # 39; s baby was born in August 2017 and she was so small, weighing only 5 pounds. As the weeks passed, Julia did not gain weight like other newborns. And there was something else.
"She had this weird coloring on her skin," says Analy Navarro. "It was almost a dark green color, it just wouldn't disappear."
Within a few days, the Navarros knew why their baby was so jaundice. Julia was diagnosed with atresia bile, or BA, a liver disease that affects 1 in 10,000 babies.
"And while it sounds rare, it's the most important reason for any child to need a liver transplant worldwide," Dr. Carp.
The sooner you can diagnose biliary atresia, Karpen says, the more treatment options you have. After 4 months, Julia was too old to undergo a Kasai procedure that could help her avoid a transplant.
"Then we found out that she would eventually need a transplant," recalls Anayl Navarro. "I thought & # 39; can I be a donor? & # 39; And they said: & # 39; Well, ideally we want a deceased donor, but we will have you tested if that is your plan B. & # 39 ; "
Surgeons wanted to give Julia time to become stronger.
"But the hardest part is that the babies can get very sick," Dr. says. Carp.
That's what happened to Julia.
By Christmas 2017, Julia's belly started to swell with fluid, a sign that her liver was failing. Halfway through January 2018 she was placed on a waiting list for a deceased donor liver. A month later, Navarros' baby was admitted to CHOA with internal bleeding and other complications. Her small liver closed quickly.
& # 39; At night, & # 39; Plan B & # 39; one day later & # 39; Plan A & # 39 ;. Doctor at Emory University Hospital hurried to complete Anayl Navarro's liver donor evaluation.
"When they confirmed that I was a party to her, it felt like I could breathe," she says.
On March 26, 2018, Children & # 39; s Healthcare of Atlanta lifted the transplant flag for Julia Navarro. Surgeons took a piece of Analy & # 39; s liver and gave it to her 7 month old.
Dr. Karpen says the operation has a success rate of 90 percent. Julia & # 39; s new liver grows as she grows and her mother's will will regenerate. Biliary atresia, he says, will not be back. But there is so much, Karpen says, they know nothing about this disease.
"The gap is, for our number one disease, what the cause is and how we intervene," he asks.
To help researchers find answers, Analy and other biliary atresia mothers she met during the treatment of Julia came up with the idea. In January of 2019, they created the & # 39; BA Hero Fund & # 39 ;, which raised research funding that has already led to a promising breakthrough. Dr. Karpen and his team have identified a gene that he says is the cause of BA in some children.
"So, I am happy to say that maybe we will start cleaning up the dirt from the window, and see something, and then get a grip on the cause, and some new goals for therapeutic intervention," Dr. Karpen says
For Analy and Jose, and for Julia – now one year after her liver transplant, the BA Hero Fund is a way to & # 39; thank you & # 39; to say for their second chance.
"Because your baby & # 39; s help and you help other families," says Analy Navarro. "You save lives."