At Boston Children's Hospital, we understand that you may have a lot of questions when your child is diagnosed with hepatitis C, such as:
- What exactly is it?
- What is the cause of hepatitis C?
- What are potential complications in my child’s case?
- What are the treatments?
- What are possible side effects from treatment?
- How will it affect my child long term?
We’ve tried to provide some answers to those questions here, and when you meet with our experts, they can explain your child’s condition and treatment options fully.
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.
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:
- Itchy skin
- Dark urine
- Muscle soreness
- Loss of appetite
- Stomach pain
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.
For details, see Tests.
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.
For details, see Treatment & care.
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.
Questions to ask your doctor
If your child has been diagnosed with hepatitis C, you and your family will play an essential role in his or her care. It’s important that you share your observations and ideas with your child’s treating physician, and that you have all the information you need to fully understand the treatment team’s explanations and recommendations.
It’s often very helpful to jot down your thoughts and questions ahead of time and bring them with you, along with a notebook, to your child’s appointment. That way, you’ll have all of your questions in front of you when you meet with your child’s treating clinician and can make notes to take home with you.
Some questions to ask your doctor might include:
- How did you arrive at this diagnosis?
- Are there any other conditions my child might have instead?
- Does my child need further testing?
- How did my child contract the hepatitis C virus?
- What is the long-term outlook for my child?
- What medications will you prescribe, and what are the possible side effects?
- How should I talk to my child about this condition and her long-term health?
- Do I need to make any changes to my child’s home and school routines?
- Can you point me to educational and support service resources for children with hepatitis C in my area?
- What other resources can you point me to for more information?
- What are the risks for other family members? Playmates, friends, babysitters?
- What precautions are necessary in the home? At school?