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Unprotected People Reports: Hepatitis B |
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One Family's Story: Living with Hepatitis B |
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| Click here for a fully-formatted PDF version
of this report |
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| The Immunization Action Coalition (IAC)
publishes articles about people who have suffered or died from
vaccine-preventable diseases and periodically devotes an IAC Express issue
to such articles. This is the 68th in our series. |
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| Immigrants and refugees from areas where HBV infection is high, such as
Asia, make up one of the highest risk groups in the United States for
developing HBV infection. The Asian Liver Center (ALC) at Stanford
University reports that the Asian American/Pacific Islander (API) population
in the United States experiences HBV infection at a rate 100 times greater
than that of the U.S. white
population: About 10% of the API community is chronically infected
with HBV, compared with 0.1% of the white population. |
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| According to ALC statistics, chronic HBV infection causes 80% of
liver cancer in the United States, leaving the API community
particularly vulnerable to a type of cancer with a high mortality
rate. National Cancer Institute statistics indicate that the five-year survival rates for primary cancers of the liver and
intrahepatic bile ducts are exceedingly low in the United States,
usually less than 10%. |
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| The following account, of three young adults in the Wise family,
exemplifies the toll undetected HBV infection takes among API
immigrants and the serious consequences misinterpreted HBV test
results can have. Written by Helen Wise, mother of the HBV-infected
young adults, the article was first published in "Hi Families"
magazine in January/February 2004. It is reprinted here with the
kind permission of Helen Wise and "Hi Families," which holds the
copyright. ["Hi Families" is published by Holt International
Children's Services, a U.S. organization involved in domestic and
international adoptions since the 1950s.] |
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| By Helen Wise |
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How could it possibly happen? Every precaution and care was taken.
Matt, our only child with hepatitis B, had been monitored since he
was two-and-a-half-months old. Three generations in our family had
been tested and vaccinated for the virus. Then, suddenly and
without warning, our middle son, Andrew, was diagnosed with
hepatitis B-related liver cancer. How? How? How?
We had felt so lucky. Matt, born in Korea, joined our family in
1984. Soon after he came home, he was diagnosed as a hepatitis B
carrier. At that time hepatitis B was a fairly new phenomenon on
the American pediatric scene, and there were still many unknowns
about the virus. A specialist explained the consequences of
hepatitis B, including the risk of liver cancer, the risk of
infection for anyone handling the child's body fluids, and the
importance of vaccinations for the whole family.
The doctor was realistic about the panic hepatitis B carriers could
cause (in 1984), so we decided to say nothing about Matt's
condition for the moment. We began training our little corner of
the world in how anyone should handle someone else's blood, and I
dealt with all diapers, spit, etc. We all got our vaccinations,
hoped Matt would show the possible spontaneous remission by school
age, and were grateful the virus seemed to have no effect on his
body. Then we went about our lives.
In 1985 our family grew again. Andrew, 7, and his sister Jenny, 6,
arrived from Korea in December, and the same pediatrician tested
[them] for hepatitis B. We were happy to hear the tests were both
negative, and both Andrew and Jenny were vaccinated. We thought
nothing more of it.
By the time Matt started school, we found the Hepatitis B
Foundation and the Liver Cancer Prevention Center at Fox Chase
Cancer Center [in Philadelphia], and Matt was part of a funded
study of hepatitis B carriers. Year after year, our questions were
patiently answered, and the answers changed as research revealed
more about hepatitis B. Somewhere between diapers and dating, we
learned that urine and saliva, like most body fluids, do not
contain a high enough virus count to have [caused] any documented
cases of infection from routine contact. Bites were a danger, but
kisses were not.
We explained to Matt's teachers that he had inherited a blood
disorder and they needed to wear gloves if they had to handle any
body fluids. I had a private conversation with the school nurse.
No one ever asked questions. I . . . knew of parents who could not
find daycare or friends for their child with hepatitis B. So, we
felt lucky.
As a very little boy, Matt learned that he in particular must not
share a toothbrush or razor, and must be careful about any blood
contact. He learned earlier than most about his liver and that he
must always protect it. We talked about the importance of a healthy
diet, exercise, and avoiding alcohol. We did not use the words
"hepatitis B" until he was old enough to read and ask questions. We
waited for him to ask about liver cancer prevention, but once he
had questions, his doctor and we answered honestly. By middle
school, we talked about everyone's responsibility to avoid sexually
transmitted infections and his obligation to protect a future
partner from hepatitis B infection.
At 18, Matt's visits to the Liver Cancer Prevention Center
increased to twice a year, since the risks increase with age. He
had a baseline ultrasound of his adult liver, against which to
measure any future changes.
A son-in-law and two grandchildren joined our family and were all
vaccinated. Matthew turned 20, still showing no hepatitis B side
effects. All was well. We were so lucky.
Then on Sept. 2, 2002, our other adopted son, Andrew, woke
complaining of abdominal pain. By then I had six children and had
been a mother for over 30 years. Stomachaches were routine. I
suggested he get dressed and go to work; maybe he would feel
better. But by the time breakfast was over, Andrew was in such pain
that his sister took him to the emergency room. By that afternoon
he was admitted to the hospital. I was stunned when two doctors
came to tell us Andrew tested positive for hepatitis B. Then I saw
"Oncology" on their nametags. I said to them, "You believe you'll
be seeing us later, don't you?" They nodded yes. I knew.
A biopsy confirmed a diagnosis of stage IV hepatocellular carcinoma
metastasized to the lungs. An earlier diagnosis could have meant
surgery or a transplant, but now chemotherapy was our only option,
and even then it only shrank the tumor in a small percentage of
patients. Our best chance was a clinical trial and a miracle.
Neither was to be. By the time Andrew qualified for a trial, his
liver function was so low he was rejected. Andrew Lee Wise died at
home on Dec. 11, 2002. He was only 24 years old.
But that is not the end of our story. After Andrew's cancer
diagnosis, I called our former pediatric group to see the results
of all the original hepatitis B tests. Their office said the lab's
records before 1992 were no longer available. One doctor gave me a
handwritten copy of their file reports, and said, "See! Their
tests were negative. Matthew's was positive." I read it for myself:
Andrew's test read HB surface antibody negative. Just surface
antibody negative means nothing! I felt and still feel like
screaming. How could a leading pediatric group in a university town
get it right in 1984 and so wrong in 1985 and 2002? How? How? How?
Everyone in the family was re-tested for the virus. All results
were negative. Jenny, Andrew's biological sister, got the good news
from a local clinic . . . but her world was shattered when the
[state health department] called to say her results had been
misinterpreted there also. She is a carrier. We can't be sure
without testing their biological mother, but it appears both Andrew
and Jenny, like Matt, were infected at birth. Jenny is being
monitored by the Liver Cancer Prevention Center and is doing fine.
Our family has been devastated by Andrew's death. We are weary and
wary, and painfully aware his life could have been prolonged and
might have been saved had his pediatricians recognized he was a
hepatitis B carrier. Jenny's second misdiagnosis brought us near
the brink of hysteria. It is one thing to know in the abstract of a
threat to a family member. It is quite another to live with a
double threat after experiencing its reality.
The lessons we learned were painful and need to be passed on, but
the experience is rare. The head of the Liver Cancer Prevention
Center said he has never seen cancer like Andrew's in one so young.
What advice do we have? Older adoptees and their families should
[be] re-test[ed] for the virus. Be sure you see and understand the
tests and results. Vaccinate the entire family. If you have been
vaccinated, ask your doctor for quantitative as well as qualitative
test results to be sure you are still adequately protected. A
booster or revaccination may be needed. Persons younger than
18 years old with hepatitis B should see a doctor annually to
monitor the liver, and if older than 18, have a baseline ultrasound
and see a doctor semiannually. Inform any past and present partner.
Stay informed about the latest research on hepatitis B. And enjoy
life.
When our youngest daughter Mary was in high school, our youth
minister asked, "What was the best gift you ever got?" Mary
replied, "Andrew, Jenny, and Matthew." We are still very lucky
parents.
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| 12/9/04 • REPORT #68 |
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| Disclaimer: The Immunization Action Coalition (IAC) publishes
Unprotected People Reports for the purpose of making them available
for our readers' review. We have not verified the content of this
report. |
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