Did I Kill my Son?

By Leslie Hsu Oh

The Tragic Story that Led Leslie Oh to Found the Hepatitis B Initiative

I can still smell the bitter roast of the surgeon’s coffee, swirling black in his hands, as he walked towards me with dread. A freshman at UCLA, I had a wad of love letters from several boys in my purse when the surgeon said, “Your brother has a massive tumor in his liver caused by hepatitis B. And I’m afraid you’re mother has hepatitis B too.”

Jon-Jon was only 17 years old. While his friends were learning how to drive, he survived a liver transplant, a metastasis to his new liver, brain, and lungs, and an attempt to end his life when a doctor  informed him (against my parent’s wishes) that he had two weeks to live. Jon-Jon died a few months after he turned 18.

The days that followed Jon-Jon’s death, Mā Ma and I could do nothing but write. Words were the only way we could make meaning out of what happened. A week later, Mā Ma was diagnosed with liver cancer. In two months, she finished writing A Whale of a Boy, a memoir about Jon-Jon’s illness, but remained silent about hers. A year later, she died never knowing that her book would help millions. It was translated from English to Chinese and published shortly after her death by her classmates from National Chengchi University’s Journalism Department. In 2010, her book was reprinted since cancer patients continue to distribute it around the world.

Mā Ma died blaming herself for giving Jon-Jon hepatitis B. She had always been overly protective, diligent about our health-checkups. So, she was furious when she discovered that our family could’ve been saved by a simple vaccine (known as the first anti-cancer vaccine).

Since the doctor explained that the majority of Asians contract the virus from mother to child during birth, Mā Ma tormented herself with the questions: Was this all my fault? Did I kill my son?

Mā Ma died a few weeks before my twenty-first birthday. She died on the day of her twenty fifth anniversary. Bà Ba sold our house, got remarried immediately and had another son.  His way of grieving was to erase everything that reminded him of Mā Ma and Jon-Jon. My Chinese relatives expected me to do the same, continue with my life as if nothing bad had happened.

In three years, I lost my entire family. I even swore that I would never get married or have kids. I told myself Mā Ma and Jon-Jon’s death had to make the world a better place.

I founded the Hepatitis B Initiative (HBI) in 1997 a few months after I started my studies at Harvard. Collaborating with students from Boston, Brandeis, Brown, Cornell, Harvard, MIT, Tufts, and Wellesley, we not only offered free hepatitis B screenings and vaccinations but also created a model for harnessing the energy of students and their ability to facilitate partnerships between community organizations (that might have a history of bad blood) and empower them to develop their own cultural and linguistically appropriate campaign. Today, many hepatitis B programs across the United States have replicated our model. I still hear from former HBI leaders who continue to launch hepatitis B programs when they graduate to their next school or workplace.

Because back then our programs included pairing up a public health or medical student with a recipient of our services, community members were more likely to be open about their fears. We discovered cultural myths like people were afraid to share dishes. They thought that chopsticks could spread hepatitis B. My own grandmother refused to dip her chips into a dish of salsa when she ate with my brother at a Mexican restaurant.

After moving to the DC area and working with the Surgeon General, Secretary of Health, White House Initiative on AAPIs, I finally gave myself permission to get married to a man as dedicated to eradicating hepatitis B as myself. In 2002, a few months after our wedding, Thomas and I expanded the HBI to the DC area.

HBI-DC was the first to screen, vaccinate, and equip Asian American pastors across the nation with a toolkit for raising awareness about hepatitis B. Because we were able to bring education, screening, and vaccination services directly to locations where hard-to-reach populations gather, our numbers screened and vaccinated and those tested positive for hepatitis B were so high that other hepatitis B programs around the Nation began to model our method.

Despite a skeletal staff, HBI continues to provide technical assistance around the world. I’m still in disbelief that HBI has been operating in several states with little funding for the past 17 years. HBI began as an Albert Schweitzer Fellowship project, has been recognized by the Surgeon General’s web site as a model program, and received numerous awards.  In addition, HBI was taught as a case study in Harvard Medical School and featured in journals like the American Journal of Public Health.

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No matter how many lives HBI saved, I felt my work was unfinished. Pregnant with my first child, I finally returned to the writing I started when Jon-Jon died. The more I wrote and tried to make sense of the ways hepatitis B affected my life, the more I realized that silence is hepatitis B’s greatest weapon.

Hepatitis B is the Silent Killer because you could have the disease and not know it.
Hepatitis B is the Silent Killer because it silences its victims.

Mā Ma never once mentioned the word hepatitis B in her book. I am still unable to convince anybody, not even my relatives, to share their hepatitis B status publically.

Most chronic hepatitis B carriers prefer to be silent about their condition. Some moms refuse to tell their children that they have hepatitis B, believing that it’s better for them not to know. Some hepatitis B carriers do not get an ultrasound every six months because they would rather not find out if they have cancer.

Part of it is human nature, to ignore what we are scared of, but it’s cultural too. I have been told all of my life to “Save face,” “Act as if it never happened,” “Better not to talk about the bad stuff.”  The Chinese even have an idiom Xiăng Pì Bù Chòu, Chòu Pì Bù Xiăng. If you directly translate each character, it means: Noisy farts don’t smell, smelly farts don’t make noise.  Amy Tan translated this Chinese idiom as “There’s more power in silence.”  On the contrary, I think this Chinese idiom suggests that being silent about things is more deadly.

Even now, I am only telling you part of my story. The rest of it, the secrets that I keep about the extent to which hepatitis B truly impacts my life, is in Fireweed, a memoir-in-progress. Nervous family members still urge that I label it fiction.

In moments when I regret writing Fireweed, a friend will tell me that my story saved her life. One chapter adapted from Fireweed was even named among the distinguished stories of the year by Best American Essays.

A journalist, photographer, and artist, Mā Ma taught me that art can say the things that we can’t and deliver a message long after the life of its creator. This is what motivates me to usher Fireweed on the path to publication because in these 17 years of advocacy, I’ve discovered that the key to ending the reign of the Silent Killer is to break silence.

Leslie Hsu Oh (www.lesliehsuoh.com) and her husband, Thomas Oh, founded The Hepatitis B Initiative of the Washington, D.C. metropolitan area. Shortly after losing her mother and brother to hepatitis B, she founded The Hepatitis B Initiative in 1997. She received a masters from Harvard and a MFA in creative writing. “Between the Lines” was named among the distinguished stories of the year by Best American Essays. She is the recipient of the first Julius B. Richmond Young Leader in Public Health Award, the first National Award for Excellence in Public Health Leadership, the Sun Memorial Award for exemplifying a commitment to improving the health and well-being of people in underserved populations, and the Schweitzer Award for reverence for life. She may be reached at lhsu@post.harvard.edu.

For more information on HBI-DC and their upcoming gala, visit www.hbi-dc.org

In our education, screening, and vaccination programs, HBI builds in teachable moments where we discover myths and try to break them. Some common myths are:

Myth: Anyone who has hepatitis B knows that they have this virus.
Reality: Hepatitis B is a silent, deadly disease. There are usually no symptoms for the majority of people who are infected with hepatitis B. They may unknowingly transmit the virus to their friends and family members through blood and bodily fluids.

Myth: I only need to get one shot and I’m safe from hepatitis B.
Reality: In order for the vaccine to be at least 90% effective, one must get 3 shots over a 6-month period.

Myth: I can share my toothbrush and not worry about getting infected with the hepatitis B virus.
Reality: If one has an open sore in their mouth, transmission of the virus can occur if you share your toothbrush. Again, hepatitis B is spread through infection of blood and bodily fluids.

Myth: I will get hepatitis B if I share chopsticks or a dinner plate with my friend or family member.
Reality: Though the risk of getting infections is very small, it is unlikely that sharing chopsticks will lead to the hepatitis B infection.

Myth: If I am diagnosed with hepatitis B, there is nothing I can do so I just have to be careful around my family and friends.
Reality: Those chronically infected with the hepatitis B virus should get screened every 6 months to test for ALT and AFP levels in their liver and they should get an ultrasound once a year to make sure their liver is healthy and functioning properly.  Early detection and treatment is critical.

Myth: Getting the hepatitis B vaccine cures me from hepatitis B.
Reality: The vaccine for hepatitis B prevents people from contracting the virus if they have not been exposed previously; the vaccine is NOT a cure. Currently, there is no cure for hepatitis B, but there are many promising drugs on the market which help hepatitis B carriers live healthy lives.

Myth: I will be protected from hepatitis B if I receive one or two of the three hepatitis B vaccines?
Reality: The first hepatitis B vaccine shot provides you 30%-50% protection.  The second hepatitis B vaccine shot (usually provided one month after the first) provides you 50%-70% protection.  The third hepatitis B vaccine shot (usually provided 6 months after the first) provides you 95%-99% protection.

Myth: If I am exposed to hepatitis B, I am automatically chronically infected with hepatitis B?
Reality: 9 out of 10 adults will get rid of the virus from their bodies after a few months.  They have acute hepatitis B.  1out of 10 adults will never get rid of the virus from their bodies.  They are chronically infected with hepatitis B.

Myth: If either parent is chronically infected with hepatitis B, my unborn child will automatically get hepatitis B.
Reality: Up to 9 out of 10 babies born to infected mothers will end up being chronically infected with hepatitis B, if they do not get the hepatitis B vaccine at birth.  If you make sure your baby gets all 3 shots, plus a shot called H-BIG, they have a 95% chance of being safe from hepatitis B for life.

Myth:  If I am chronically infected with hepatitis B, I can’t breastfeed my baby.
Reality:  If your baby gets a shot called H-BIG and a shot of hepatitis B vaccine within 12 hours of birth, it is okay for you to start breast-feeding your baby right away.  Be sure to take good care of your nipple areas to prevent cracking and bleeding.