What exactly is biliary atresia, and where is Jaime now?
We talk a lot about Jaime’s liver, appointments, fluid, feeding therapy and transplant, but we know not everyone knows exactly what biliary atresia means.
Biliary atresia is a rare liver disease that affects babies. The bile ducts that are supposed to carry bile from the liver to the intestines are blocked or damaged. When bile can’t drain the way it should, it builds up in the liver and causes scarring and permanent liver damage.
Jaime was diagnosed when he was just over 2 months old after being jaundiced since birth. In April, he went through a major surgery that included the Kasai procedure to create a new pathway for bile to drain from his liver. He also had a Ladd procedure to correct an intestinal malrotation and had his gallbladder removed at the same time.
The Kasai can help slow the progression of biliary atresia, but it is not a cure.
Even though some of Jaime’s labs have improved and there are plenty of days when he looks like a happy, smiling, perfectly normal baby, his liver has still been through a lot. Because of that, he was officially listed for a liver transplant on July 29. 💚
So right now, we wait.
In the meantime, his team is doing everything they can to keep him healthy, growing and strong.One of the biggest things they’re watching is ascites, which is fluid building up in his abdomen. He has already needed a paracentesis to drain the fluid, and he is now on Lasix to help control it. His doctors continue to closely watch his belly, labs and electrolytes.
Nutrition has also been a huge part of Jaime’s journey. Babies with biliary atresia can have trouble absorbing nutrients and gaining weight, and Jaime has had his own struggles with feeding. He needed an NG tube, which goes through the nose into the stomach, to help make sure he was getting the calories and nutrition his body needed when he wasn’t able to take enough by mouth.
He’s now on higher-calorie feeds and continues feeding therapy to work on swallowing, oral skills and getting more comfortable with eating by mouth. Every little bit of progress counts.He’s also had more than his fair share of hospital visits lately for fevers and viruses. With everything his little body is already dealing with, those illnesses have to be taken seriously.But through all of this, Jaime is still Jaime. He gives us those big smiles. And most days, if you didn’t know what was happening inside that little body, you would never guess just how hard it is working.
His next liver appointment is September 15, when his team will reassess how he’s doing with the fluid and everything else.
So for now, we keep him growing, keep him healthy, keep showing up for appointments, and wait for the day when the right liver and the right timing come together.
Biliary atresia is part of Jaime’s story, but it definitely isn’t all of it.
