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Lizzie wants to be a doctor when she grows up. She sees her doctor more often than most kids, because she has a problem called Alagille’s syndrome. This is a disease that can make a person sick. Lizzie is okay, though. She takes medicine and vitamins every day to help keep her healthy. And, like I said, she visits the doctor. Sometimes Lizzie visits Dr. Jones when she doesn’t feel well. Other times, Dr. Jones just wants to check up on Lizzie.
Lizzie has been learning about how the body works at school. She wanted to know how her body works, and how it is different because of her Alagille’s. So a few nights ago at dinner, Lizzie asked her mom and dad about it. Lizzie’s mom and dad taught her all about Alagille’s syndrome.
Lizzie already knew that Alagille’s is not like a cold. You can’t catch it by playing with someone who has Alagille’s. None of Lizzie’s friends at school have it! Lizzie had Alagille’s when she was born. It is a type of disease that hurts the liver. Lizzie learned in school that the liver is an organ in the body; everybody has one. It’s not like an organ you play music on, but a part of the body that helps keep you strong and healthy.
The liver is the biggest organ inside of your body. Your liver is on the right side of your body near your tummy. It’s brownish purple and kind of slimy. It’s shaped kind of like a football, but flat on one side. Your liver has lots of work to do.
Your liver cleans dirt and garbage out of your blood. It’s like taking a bath to keep clean. When you take a bath, you wash dirt off your body. Your blood needs to be clean, just like your body.
Your liver makes sure your body can use the good stuff that’s in the food you eat. Your body needs good stuff like vitamins to grow and be strong.
Another big job for your liver is to make bile. “What is bile?” asked Lizzie. “We haven’t learned about that in school.” Bile is a special kind of juice your body makes. Bile helps break down the food you eat into different parts. The good stuff is turned into energy, which you use for running, dancing, or even reading a book. The rest is called “waste”. Bile also helps carry waste out of your body.
Your body uses bile in your small intestine. Your small intestine is one of the stops food makes as it moves through your body. “But if bile is made in my liver, how does it get to the small intestine?” asked Lizzie. “That’s a good question, Lizzie,” Lizzie’s mom said. She explained that the liver squirts bile into the small intestine through bile ducts.
Lizzie laughed. She was imagining little yellow ducks quacking away inside her body! She told her mom and dad, and they laughed too. “Not ‘ducks’,” Lizzie’s dad told her. Our bodies have “ducts” with a “t”!
Bile ducts are like tiny tunnels. Cars go into one end of a tunnel and come out the other end. Like a car driving through a tunnel, your liver squirts bile into your bile ducts and it comes out the other end into your small intestine.
Alagille’s hurts Lizzie’s bile ducts. Lizzie’s mom and dad told Lizzie that Alagille’s caused her to be born with fewer bile ducts than her body needs. That’s why Lizzie’s liver is getting hurt. There are not enough “tunnels” for Lizzie’s bile to get from her liver to her small intestine. If the bile ducts were tunnels and the bile was cars, there would be a lot of traffic jams. Bile gets backed up in Lizzie’s liver and can’t get out. This makes it harder for Lizzie’s liver to do its jobs.
Lizzie learned that Alagille’s can hurt her heart and other parts of her body too. That’s why it’s important for Lizzie to have check-ups with Dr. Jones. Dr. Jones helps take care of Lizzie. He doesn’t want her liver or heart or anything else to hurt. He wants to help Lizzie get better. The medicine and vitamins Lizzie takes also help make her healthier.
Lizzie’s mom and dad always tell her that she needs to eat a lot. Lizzie needs extra food so that she can grow up to be strong. After all, Lizzie will need lots of energy to become a doctor! Lizzie eats all of her food at breakfast, lunch, and dinner. She even eats lots of snacks during the day. It’s not a problem for Lizzie to clean her plate because she loves to eat – especially spaghetti and meatballs! A good diet helps give Lizzie enough energy for the things she likes doing now, too. Even though Lizzie has Alagille’s, she can still play kickball and ride her bike, and do all the things her friends do.
Lizzie’s mom and dad told her some people with Alagille’s need liver transplants. When a person gets a liver transplant, his or her liver is replaced with a healthy liver. Lizzie might need a liver transplant someday, but only if her liver gets sicker than it is now. When Lizzie visits Dr. Jones, he checks for any signs that Lizzie needs a new liver. If Lizzie’s Alagille’s ever does get worse, Dr. Jones will be able to help her right away.
At Lizzie’s next doctor’s appointment, she surprised Dr. Jones. She told him all about Alagille’s syndrome. Dr. Jones told Lizzie how smart and brave she is. “Are you sure you’re not a doctor already?” he kidded with her. This made Lizzie smile and feel good!
Help your child understand liver transplantation by reading the story Life Gets Busy for Cody and Nate.
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One Children’s Hospital Way
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Pittsburgh, PA 15224
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