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ATLANTA (FOX 5 Atlanta) – Dr. Saul Karpen, a liver specialist at Children & # 39; s Healthcare in Atlanta, remembers touching Julia Navarro's small abdomen and knowing what her parents and herself were facing. Karpen chose his words with caution in November 2017.
"I'm trying to give quite a bit of information because I think the whole thing is so difficult," says Dr. Karpen. "But, I think they've had it wonderfully and said, 'OK, what do we do?'
The baby of Analy and Jose Navarro was born in August 2017. She was so small and weighed just 5 pounds. Over the weeks, Julia was not gaining weight like other newborns. And there was something else.
"She had this strange color on her skin," explains Navarro. "It was like a dark green tan, almost, it would not go away."
In a few days, the Navarros realized why their baby was so yellow. Julia has been diagnosed with biliary atresia, or BA, a liver disease that affects one in 10,000 babies.
"And while it sounds rare, it's the number one reason that a child needs a liver transplant in the world," Dr. Karpen said.
Karpen says that the sooner you can diagnose biliary atresia, the more treatment options you have. At 4 months, Julia was too old to undergo a procedure in Kasai that could help her avoid a transplant.
"It was at that time that we discovered that she was eventually going to need a transplant," recalls Anayl Navarro. "I was like," Can I be a donor? "And they said:" Well, ideally, we want a deceased donor, but we'll get you tested if that's the case. " 39, is your plan B. "
The surgeons wanted to give Julia time to become stronger.
"But the most difficult thing is that infants can get very sick," says Dr. Karpen.
That's what happened to Julia.
At Christmas 2017, Julia's belly began to swell with liquid, a sign that her liver was out of order. In mid-January 2018, she was placed on a waiting list for a deceased donor liver. A month later, the Navarros baby was admitted to CHOA with internal bleeding and other complications. His little liver was closing quickly.
Overnight, "Plan B" became "Plan A." A doctor from Emory University Hospital is eager to complete the badessment of Anayl Navarro 's liver donor.
"When they confirmed that I was a man apart, I felt that I could breathe," she says.
On March 26, 2018, Children & # 39; s Healthcare of Atlanta lifted her transplant flag for Julia Navarro. The surgeons took a piece of Analy liver and gave it to his 7 month old baby.
Dr. Karpen says that surgery has a 90% success rate. Julia's new liver will grow as her growth progresses and that of her mother will regenerate. Biliary atresia, he says, will not come back. But there are so many things, says Karpen, that they do not know this disease.
"The difference is that for our number one disease, what causes it and how can we intervene," he asks.
To help the researchers find answers, Analy and other mothers with biliary atresia she met during Julia's treatment came up with an idea. In January 2019, they created the BA Hero Fund, a fundraiser that has already led to a promising breakthrough. Dr. Karpen and his team have identified a gene that could be the cause of AB in some children.
"So, I'm happy to say that we may be starting to clear the window of grime and we will see something, and then we will begin to understand the cause and define new targets for therapeutic intervention," he said. Dr. Karpen says
For Analy and Jose, and for Julia, who now has one year of liver transplant, the BA Hero Fund is a way of saying "thank you" for their second chance.
"Because you help babies and other families," says Analy Navarro. "You save lives."
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