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Pediatric Liver Center
End-stage liver disease in children
We see more, treat more and heal more kids than any other hospital in the region.
What is end-stage liver disease?
End-stage liver disease, or chronic liver failure, can progress over months and years. In end-stage liver disease (ESLD), scar tissue replaces healthy liver tissue over time. This means the liver can’t perform its normal functions, which are to process nutrients, maintain blood sugar levels and filter toxins.
Depending on the severity of your child’s end-stage liver disease, it may result in the need for a liver transplant. Our team of liver and transplantation specialists will do everything possible to slow the pace of the disease and provide the best transplantation options it a liver transplant becomes necessary. Many conditions can affect your child’s liver function, which can result in ESLD, including:
- Ascites
- Hepatic encephalopathy
- Renal impairment
- Variceal hemorrhaging
What causes end-stage liver disease in children?
Pediatric liver disease happens when the liver is damaged to the point that it can’t function normally. When diseases or substances damage the liver, the cells of the liver are scarred (known as fibrosis).
When the whole liver becomes scarred, it becomes hard, shrinks and can’t function as it should. This condition is called cirrhosis of the liver and leads to end-stage liver disease.
Who gets pediatric end-stage liver disease?
In adults, years of drinking alcohol or a buildup of fat in the liver can cause ESLD. However, end-stage liver disease in children is usually linked to a liver disorder. A range of diseases, which often progress over months or years, can cause ESLD in children, including:
- Alpha-1 antitrypsin deficiency
- Autoimmune hepatitis
- Biliary atresia
- Congenital hepatic fibrosis
- Cystic fibrosis and cystic fibrosis liver disease
- Drugs and toxins
- Hepatitis B and hepatitis C
- Non-alcoholic fatty liver disease
- Primary sclerosing cholangitis
- Progressive familial intrahepatic cholestasis
- Wilson disease
What are the signs and symptoms of end-stage liver disease?
End-stage liver disease may not cause symptoms early on. Portal hypertension (increased blood pressure in the portal vein) can often be the first sign that the liver is scarred and not able to function normally.
Many signs and symptoms develop as scar tissue on the liver replaces healthy liver cells (fibrosis). The signs and symptoms of a damaged liver may include:
- Fatigue and weakness
- Poor appetite and weight loss
- Water retention and swelling in the legs and abdomen (ascites)
- An enlarged liver and enlarged spleen
- Jaundice (yellow skin) and icterus (yellow eyes)
- Itching and bruising, easily bleeding, vomiting blood or dark and tarry stools
- Thin, purplish-red, spidery blood vessels on the skin, especially around the belly button
- Reddened palms
- Tremors
- Forgetfulness or confusion
- Inability to process certain medications
- Enlarged, twisted, thin-walled blood vessels (varices) in the esophagus or stomach, which can rupture and cause life-threatening bleeding
- Liver cancer
What tests are used to diagnose end-stage liver disease?
If we think your child may have end-stage liver disease, we order blood tests to assess how well their liver is working and help determine a cause.
We also use imaging tests such as an ultrasound, CT scan, FibroScan® or MRI. These tests provide a clear picture of the liver or spleen to identify changes linked to cirrhosis or ESLD.
Your child’s doctor may also request a liver biopsy to help diagnose ESLD and to see to what stage the liver disease has progressed.
What to expect from a liver biopsy
A board-certified pediatric hepatologist and pediatric anesthesiologist from our gastrointestinal (GI) procedure center perform the liver biopsy. Your child is under general anesthesia, so they feel no pain or discomfort. We remove a small piece of the liver and a board-certified pediatric pathologist examines it under a microscope.
Why choose us to test for end-stage liver disease?
At Children’s Hospital Colorado, many different specialists work together to rapidly diagnose and treat the root causes of the disease. Once we determine the specific underlying cause of the disease, we can then treat it. Treating the underlying cause stops the liver from being damaged more. In many cases, we can’t reverse the damage that has already occurred in end-stage liver disease.
How do we diagnose end-stage liver disease?
We diagnose end-stage liver disease through a thorough review of medical history, physical exam and testing. While we typically use a liver biopsy to monitor cirrhosis leading to ESLD, we also have alternative, non-invasive method to determine the amount of scar tissue present in a child’s liver. FibroScan is a specialized ultrasound machine that measures fibrosis (scarring) and steatosis (fatty change) in the liver.
How is end-stage liver disease treated?
Treating end-stage liver disease really means treating the underlying issue that caused the liver scarring. It also means treating complications of end-stage liver disease, which can include:
- Nutritional support for malnutrition
- Endoscopic evaluation for gastrointestinal bleeding due to gastroesophageal varices
- Medications for the fluid buildup in the abdominal cavity (ascites)
- Liver transplantation in severe cases
Why choose us for treatment of end-stage liver disease?
Our Pediatric Liver Center has extensive experience caring for children with end-stage liver disease from all known causes. Our multidisciplinary team can address the underlying liver disease, as well as any complications related to ESLD. If your child needs liver transplantation, their doctor will refer them to the Pediatric Liver Transplant Program. Our transplant team can thoroughly assess your child and help you decide which liver transplant option is right for your family.
Helpful resources
- Children’s Liver Association for Support Services (CLASS) strives to help families affected by liver disease by addressing their emotional, educational and financial needs.
- The American Liver Foundation (ALF) promotes education, advocacy, support services and research for the prevention, treatment and cure of liver disease.
- Children’s Liver Disease Foundation (CLDF) is dedicated to fighting all childhood liver diseases by treating young people with liver disease and their families with dignity, respect and compassion.
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