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Tag Archives: Adoption

Hepatitis B Diagnosis & Monitoring, Hepatitis B Prevention, Living with Hepatitis B

Adoption and Hepatitis B

Have you been thinking about adoption for a long time or have been inspired by NBC’s show, This is Us, to adopt? Adoption is exciting! However, it can be nerve wracking and feel overwhelming. We at the Hepatitis B Foundation can help with one aspect of the adoption process – making sure you have accurate information about hepatitis B.

It is important to be armed with accurate information about hepatitis B when preparing for adoption for both international and domestic adoptions. This can help protect your future child, family members and yourself when you welcome your future child with open arms.

Many people wish to adopt children from countries where hepatitis B infections are common: Asia, South America, Eastern Europe, and some parts of Africa. Children from these regions could be infected with the virus since it can be unknowingly passed from birth mothers who have hepatitis B and transmit the disease to their children during delivery. In addition, many of these countries struggle with proper infection control practices that place babies and young children at risk with unsafe medical procedures. Unfortunately, many infants still do not have access to the birth dose of the hepatitis B vaccine to help prevent transmission.

Domestic adoptions also present some risk. Children born to women in high-risk groups (e.g. illicit drug users, multiple sexual partners, etc.) could be exposed to hepatitis B at birth. In addition, children from group homes are at increased risk for hepatitis B infection. The good news is that there are procedures in place that can prevent a baby from getting infected if born to an infected mother – and the success rate is up to 95%! This includes providing the first dose of the hepatitis B vaccine along with a dose of hepatitis B immune globulin (HBIG) within 12 hours of birth. If you are planning a U.S. adoption, and know that the birth mother is infected, you can ensure that the birth hospital knows about these procedures and can administer the shots on time.

During the adoption process, the adoption agency should tell you if your child has been tested for hepatitis B, but there can be errors if the child was tested only as an infant. With an international adoption, it is advised that you do not request that your child be tested since the blood test itself could be a source of infection. If you are concerned about the results of these tests, please contact us to speak with our knowledgeable staff. We can also refer you to a parent who has adopted a child with hepatitis B. Whether your child has been diagnosed with hepatitis B or not, testing for HBV should be repeated once you’re home. If needed, you can refer to our physician directory to find a pediatric specialist who knows about hepatitis B.

If you do find out that your child does have hepatitis B, you can handle it!Hepatitis B is a manageable disease. Many families seeking a “special needs adoption” choose to adopt a child with chronic hepatitis B because it is manageable and treatable. Hepatitis B is a vaccine preventable disease, so newly adopted children can be safely integrated into vaccinated families. Children with chronic HBV can expect to live a long and healthy life if they are monitored by a pediatric liver specialist. Some may need treatment during childhood, most probably won’t. Hepatitis B does not affect a child’s growth and development, and there are generally no restrictions associated with chronic hepatitis B. It is recommended that those with chronic hepatitis B see a pediatric liver specialist every six months for hepatitis B management. Often this entails only blood work to monitor the child’s HBV and liver health. Also make sure household members are vaccinated and that you talk to talk to all of your children about the importance of handwashing and “never touching anyone’s blood”. When your children get older, help them acclimate to dating and disclosure. The hepatitis B vaccine is required for school in all but four states.

For some tips, you can visit our website on adoption, children with hepatitis B, and one of our previous blogs. You can also watch some adoption stories from our #justB storytelling campaign. Be sure to watch Maureen’s, Maureen K’s, and Jin’s stories about the international adoption process with hepatitis B. You can also watch Janet and Kurt’s domestic adoption process. Please consider opening your home to an adopted child. It will change your life.

Hepatitis B Advocacy, Hepatitis B Treatment

The Terrible Price Paid When Doctors Fail to Test and Treat Patients for Hepatitis B

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Image courtesy of Janpen04081986 at FreeDigitalPhotos.net.
Image courtesy of Janpen04081986 at FreeDigitalPhotos.net.

By Christine Kukka

The day we arrived home from China, my husband and I brought our four-month-old adopted daughter to a pediatrician for a check-up. The doctor looked at my daughter’s health records from China, saw she had tested negative for hepatitis B, and said, “Good, I don’t have to test her for that.”

About a year later, I got sick, very sick. I felt nauseous, my stomach hurt and I felt bone tired. I gradually recovered and chalked it up to a bad case of flu.

When my daughter was 2 years old, I read on an adoption email list that some children were testing positive for hepatitis B stateside, though their medical reports in China had given them a clean bill of health. During her next check-up, I asked the pediatrician to test her for hepatitis B. The test result came back positive. A week later, so did mine.

My daughter had chronic hepatitis B, and I, who had donated blood regularly until I became a busy parent, had  an acute case, and cleared the infection. Our story, unfortunately, is not uncommon. Across the U.S., many primary care doctors fail to test at-risk patients for hepatitis B.

I live in a rural, New England state where there are not many people from countries with high rates of hepatitis B. Our pediatrician didn’t know that it can take several weeks after exposure  for an infection to show up in a lab test. She didn’t know that China’s medical records weren’t reliable. She knows it now, but many providers still don’t.

Over the years, I have heard many similar stories with worse outcomes. In one case, a young woman born in South Korea suffered epilepsy and her doctor treated her with a common seizure medication without first screening her for liver infection or damage. She died in her early 20s from liver cancer. The epilepsy drug accelerated her hepatitis B-related liver disease.

A recent article published on the Monthly Prescribing Reference website, describes how a primary care provider was sued for malpractice after he failed to monitor a patient for liver damage despite the fact the Asian-American patient told him he had hepatitis B in his teens. The patient, who was treated by the doctor for more than 15 years, died from liver cancer resulting from untreated hepatitis B.

In addition to these stories, there are numerous studies published in medical journals that show doctors often fail to test patients for hepatitis B or treat them appropriately when hepatitis B is diagnosed. Even liver experts who should know better often don’t follow medical guidelines that recommend antiviral treatment for hepatitis B-related liver damage.

I often wonder why there is this breakdown in hepatitis B care. I wonder if it stems from racism or prejudice. Many people with hepatitis B are people of color, recent immigrants, gay, or low-income. These patients can be challenging for doctors, especially when providers have little experience with hepatitis B, but that’s no excuse.

Over the years, I have accompanied my daughter to her medical appointments and often remind doctors what labs they should order and what the latest monitoring guidelines are. The best of them admit they don’t know how to treat hepatitis B and sit down and read the latest guidelines and discuss a care plan with my daughter. The worse simply do whatever I ask, and I am no doctor.

martin luther king blue I have found one of the best tools available  are software programs that link a patient’s electronic medical record to current medical guidelines. It makes it easy for doctors to know what tests should be ordered, especially if they have never treated hepatitis B before. But they need to have the software and the desire to use it.

I appreciate that doctors are human, over-worked and are driven by an assembly line business model that makes it hard to pause and research a new medical condition. However, the human price paid for lapses in care is terrible, and far more costly considering the expense of treating liver cancer, compared to running the right tests and prescribing the correct antiviral treatment today.

In the U.S., about two-thirds of people living with chronic hepatitis B don’t know they’re infected. They don’t have the money, the insurance coverage, or access to the right doctors who will test and treat them, and make sure their family members are tested and vaccinated. An estimated 20 percent of these people will die prematurely from liver disease. And today, as I listen to the news, I am afraid it’s only going to get worse.

Living with Hepatitis B

The Annual Hepatitis B Check-up: Facing Mortality and a Missing History

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Image by worradmu, courtesy of FreeDigitalPhotos.net.
Image by worradmu, courtesy of FreeDigitalPhotos.net.

For more than 20 years, I have accompanied my daughter to her annual hepatitis B check-up with her liver specialist. She is 22 and does not need me to come, but I always go out of habit and love.

After the appointment, we sit eating lunch and I talk about how lucky she is that her liver has been healthy and her viral load undetectable for many years. Recently, she started testing negative for the hepatitis B surface antigen (HBsAg). However, she has never developed hepatitis B surface antibodies. Her immune system has cleaned house, but has lacked the power to produce enough surface antibodies to show up on lab tests and declare her free of infection.

For the second year in a row, her doctor gave her a hepatitis B vaccine shot, an experiment to see if the injection of HBsAg would spur her immune system to generate enough surface antibodies to register in a lab test. Continue reading "The Annual Hepatitis B Check-up: Facing Mortality and a Missing History" →

Hepatitis B Prevention, Living with Hepatitis B

Preparing for College, Dating and Disclosing Hepatitis B

Image courtesy of jesadaphorn at FreeDigitalPhotos.net
Image courtesy of jesadaphorn at FreeDigitalPhotos.net

When my daughter, who has chronic hepatitis B, packed for her freshman year of college, I peppered her with warnings about the need for standard precautions and condoms. I suggested wording for a future conversation where she would disclose her infection and negotiate safe sex with a potential partner.

I hoped these verbal dress rehearsals would empower and protect her, especially if that potential boyfriend turned her down. I wanted her to know that any rejection would not be about her or her hepatitis B, it would be about his fears. Continue reading "Preparing for College, Dating and Disclosing Hepatitis B" →

Baruch S. Blumberg Institute