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Hepatitis C

  • For decades, children and adults who appeared at a doctor’s office with a swollen liver or abnormal liver tests and who tested negative for the two major hepatitis viruses – hepatitis A and hepatitis B – were simply lumped as having non-A non-B hepatitis, a condition with few specific treatment options.

    All that changed with the discovery in the 1970s of what is now known to be the hepatitis D virus, followed in 1989 by that of the hepatitis C virus (HCV). Both viruses cause their own progressive and slow disease and requires their own approaches to treatment and care. (Two more hepatitis viruses – lettered E and G – have since been found to also cause primary liver disease in people.)

    Hepatitis C is now recognized as a significant liver disease affecting some 3 percent of all children worldwide. There are between 20,000 and 40,000 new cases of hepatitis C in the United States each year, the variability stemming from the fact that because most children and adults with hepatitis C feel no specific symptoms; many do not even know they are infected.

    In the past HCV was primarily passed through blood transfusions, but today the most common route by which a child might be infected with the virus is at birth from an infected mother. It is important to note, though, that this is still an uncommon event; a woman with hepatitis C has about a 1 in 20 (5 percent) chance of passing the virus on to her child. To put this in perspective, the risk of a woman with HIV passing that virus on to her child is upwards of 45 percent, according to the World Health Organization; for hepatitis B, the risk can be up to 90 percent.

    There are two phases of hepatitis C: acute and chronic. Acute hepatitis C is a mild illness that children and adults experience within the first six months of infection. Most people with acute hepatitis C have no symptoms. As many as a quarter of children infected with HCV clear the virus on their own without any treatment during the acute phase. Those who do not clear the virus progress on to chronic hepatitis C, a serious, long-term illness that can over the course of decades damage the liver to the point that a transplant becomes necessary.

    There is treatment available for children with chronic hepatitis C: a combination of two drugs called peginterferon and ribavirin. The course of treatment that our doctors would recommend depends on which of the six genetic types, or genotypes, of the virus a child is carrying. Some of these genotypes are more common in the United States, while others are found more often in other parts of the world.

    How Boston Children's Hospital approaches hepatitis C

    The Center for Childhood Liver Disease at Boston Children's Hospital is one of the leading centers internationally for the care of children with hepatitis C. In addition to the standard treatments, our team of certified pediatric hepatologists is also at the forefront of treatment research, actively working to help make newly approved treatments for adults with hepatitis C available to children. They are well versed in the nuances of the different treatment and care requirements for each of the six different HCV genotypes.

    Hepatitis C: Reviewed by Maureen Jonas, MD
    © Boston Children’s Hospital , 2012

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    Phone: 617-355-5837
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  • What is the liver, and what does it do?

    The liver is the body’s second largest organ, located in the right side of the abdominal cavity below the diaphragm and above the right kidney and intestines. The liver helps the body in hundreds of ways, mainly by:

    • Turning nutrients from the food we eat and chemicals from the medicines we take into forms that the rest of our bodies can use.

    • Cleaning the bloodstream of harmful substances and poisons.

    • Producing bile, which contains chemicals to help us digest the food we eat.

    • Helping control blood sugar and cholesterol levels

    • Making the proteins that allow blood to clot normally.

    What is hepatitis C?

    Hepatitis C is a liver disease caused by the hepatitis C virus (HCV), and ranges in severity from a mild illness that lasts a few weeks and clears on its own to a serious, long-term illness that requires lifelong care.

    A comparison of biopsy samples from a healthy liver (left) and the livers of people with hepatitis C (right).

    There are two forms of hepatitis C, acute and chronic. Acute hepatitis C is a relatively short-term illness that lasts no more than 6 months after becoming infected with HCV. A small proportion of people who contract HCV clear the virus and recover fully within that six-month window. Upwards of a quarter of children clear the infection on their own, making them more likely to do so than adults.

    Children and adults who are not able to clear an HCV infection in the acute stage go on to develop the chronic form of hepatitis C, a serious illness that can cause long-term health problems and requires long-term care. In adults in many part so the world, it is the most common cause of chronic liver disease, such as scarring of the liver (cirrhosis) or liver cancer. Somewhere between 10 and 20 percent of chronic hepatitis patients will, over the course of decades, go on to develop serious liver damage and one or both of these complications.

    What happens to the liver in hepatitis C?

    When infected, the liver becomes inflamed. The inflammation may in turn cause the healthy, soft tissues in the liver to harden and scar, which if not stopped can lead to serious liver diseases such as cirrhosis or liver cancer. If the damage is severe enough, the liver may not perform all of its functions normally.


    What causes hepatitis C?

    Hepatitis C is caused by infection with HCV. From a medical standpoint, HCV is a relatively new virus, but its effects on the liver have been recognized for some time. Until the virus was discovered in 1989, the disease was simply known as non-A non-B hepatitis.

    The virus is passed from person to person through contact with blood infected with HCV. Mothers infected with HCV can pass the virus on to their children at birth. While this is the most common way for a child in the United States to become infected with HCV, it is an uncommon event: a mother infected with HCV has about a 5 percent (1 in 20) chance of passing the virus on to her child. About a quarter of children infected with the virus in this way clear it without treatment by the time they reach age 3. People, especially teenagers, can also catch HCV through injected drug use, tattoos (especially when not done by a professional tattoo artist), and other forms of contact with potentially infected blood (e.g., needle stick in a health care setting).

    Signs and symptoms

    What are the symptoms of hepatitis C?

    The majority of children with hepatitis C, be it acute or chronic, have no symptoms. As they age, though, the virus can cause ever-greater damage to the liver, which, in later stages, can cause symptoms like:

    • Tiredness
    • Itchy skin
    • Dark urine
    • Muscle soreness
    • Nausea
    • Loss of appetite
    • Stomach pain
    • Jaundice

    How is hepatitis C diagnosed?

    If your child’s doctor suspects that your child may have been infected with hepatitis C, he or she may test their blood to see if it contains antibody to the virus. If the test comes back positive, your child’s doctor will run additional tests for the virus itself and to see which genetic type, or genotype, of the virus the child is carrying. The results of this test will determine the course of action your doctor will recommend.

    Patients with chronic hepatitis C typically undergo periodic tests to monitor their liver inflammation and function and look for signs of serious liver disease.

    How do you treat hepatitis C?

    Acute and chronic hepatitis C are treated very differently. In prescribing treatment for hepatitis C, doctors in the Center for Childhood Liver Disease aim to eliminate the virus and prevent the progressive liver damage that could lead to cirrhosis or liver cancer.

    Acute hepatitis C: If your child has acute hepatitis C, our doctors will recommend rest, healthy eating, and drinking plenty of fluids, though depending on the circumstances some cases of acute hepatitis C may be treated.

    Chronic hepatitis C: If we determine that the infection has lasted more than 6 months, we may start treatment with the two drugs currently used together to treat chronic hepatitis C: peginterferon and ribavirin. However, doctors do not treat children with hepatitis C until they reach age 3 because of concerns of possible toxicity and the low chance that children younger than 3 will have significant liver damage from HCV.

    All children and adults with hepatitis C should be vaccinated against the other two major hepatitis viruses, hepatitis A and hepatitis B.

    Some children with other medical conditions, such as those with thalassemia, other viral infections, or serious kidney disease, may need to be treated differently. You should tell your doctor if your child has any other medical conditions before starting treatment for hepatitis C.

    Children with hepatitis C can lead completely normal lives, and can attend school and play sports without any special arrangements.

    How can hepatitis C affect my child in the long term?

    If left untreated or if treated and the treatment fails, chronic hepatitis C can last for decades. During that time, it can progressively damage the liver and lead to such complications as cirrhosis and liver cancer. When they become older, children with hepatitis C should avoid drinking alcohol, as it can make the disease progress more quickly.

    If over time the liver begins to fail because of the hepatitis and its complications, your child may need a liver transplant. While hepatitis C is one of the most common reasons for an adult to receive a liver transplant, it is not a common reason among children.

  • Tests

    As noted earlier, a mother with hepatitis C can pass HCV on to her child, though this is not common. If your doctor suspects that your child may have hepatitis C, he or she may order a blood test to see whether your child’s blood contains antibody against HCV. Antibodies are proteins produced by the immune system in response to infections from viruses, bacteria, and other harmful organisms. In the case of HCV, the antibody is not “protective” (that is, it does not make your child immune to or safe from the virus) but rather simply indicates that your child has been exposed to HCV.

    The antibody test can be confused by the fact that children younger than 18 months often still carry antibodies from their mother in their blood; these maternal antibodies can mask the presence of antibodies produced by the child’s own immune system, or they may make it appear like the child is infected when he or she is not. For this reason, your doctor may hold off on testing your child until he or she reaches 18 months of age.

    The antibody test can only tell doctors if your child has been exposed to HCV at some point in his or her life, not whether he or she is currently infected with it. To do that, your doctor will order an additional test, this time for the virus itself. This test can be carried out at a younger age than the antibody test, though it is most accurate if your child is older than 6 months. However, since some babies will go on to the clear the virus by age 3, your child’s doctor may defer testing until that age.

    There are six major genetic types, or genotypes, of the virus, each of which responds differently to treatment. Different genotypes are more common in different parts of the world; most cases of hepatitis C in the United States, for instance, can be traced to infection with HCV genotype 1. To decide on the best course of action, your doctor will conduct one more test, this time to see which genotype of the virus your child is carrying. With this information in hand, your doctor can then recommend the best treatment plan for your child.

    Your doctor may also discuss ordering a liver biopsy to see whether the virus has started to cause your child’s liver to scar, and if so how much. Should your child have chronic hepatitis C, he or she will also need to have periodic liver tests to look for any signs of chronic liver disease.

  • At Boston Children's Hospital, we take a multidisciplinary approach to the care of children with hepatitis C. Our Center for Childhood Liver Disease is one of the few centers with a dedicated team of specialists who are board-certified in pediatric hepatology.

    Acute and chronic hepatitis C are treated differently, but in either case, our goals in treating your child are to eliminate the virus and prevent the progressive liver damage that could lead to cirrhosis or liver cancer. There is one treatment we recommend for everyone: Anyone with hepatitis C should also be vaccinated against the two other major hepatitis viruses: hepatitis A and hepatitis B.

    Acute hepatitis C

    The usual treatment for acute hepatitis C is no treatment. Rather, our doctors recommend rest, healthy eating, and drinking plenty of fluids to help the body clear the virus on its own. Your child will be tested periodically to see if the infection goes away on its own.

    Chronic hepatitis C

    Children with chronic hepatitis C are treated with a combination of two drugs, peginterferon and ribavirin. The duration of treatment and the decision on when to start treatment depend heavily on which genotype of the virus your child is carrying (see Tests) and other factors such as severity of disease, other conditions or medications, and your and your child's readiness to start treatment. Because of concerns about the potential toxicity of these medications, we do not recommend giving them to any child with hepatitis C under age 3.

    It is important to tell your doctor if your child has any other medical conditions including thalassemia, other viral infections, autoimmune conditions, or serious kidney disease. The other conditions would require that your doctor take a different approach to your child's hepatitis C treatment.

    Two new medications, boceprevir and telaprevir, were recently approved for the treatment of adults infected with HCV genotype 1. However, these medications have not yet been approved for children. The Center for Childhood Liver Disease is launching clinical trials that will help determine whether these medications can help children with HCV genotype 1.

    In the long term, children and adults with chronic hepatitis C should avoid alcohol, as it can speed the progression of liver disease, and should also be careful about which prescription or over-the-counter medications or supplements they take. In addition, it is important to maintain a healthy weight, since being overweight can make the liver disease progress faster and the treatment less effective. They should also have their liver function checked regularly to look for signs of advanced liver disease.

    Care in school and other group settings

    The doctors and nurses in the Center for Childhood Liver Disease are often asked whether schools, sports teams, and other group settings need to have special precautions in place for children with hepatitis C. Beyond the universal precautions that all schools, etc. should have in place to deal with contact and disposal of items with blood on them, the answer is no. The American Academy of Pediatrics says that children with hepatitis C can do anything that other children can.

    You can prevent the spread of the virus within the household by not sharing any items that may be exposed to blood, such as toothbrushes, razors, pierced earrings, nail clippers, etc.; all other normal family activities are fine.

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