Personal Stories: Morgan’s Story
Successful Treatment of a Child Living with Chronic Hepatitis B
When Helen Kane and her husband adopted their daughter in China, they knew nothing about hepatitis B. They certainly never imagined that their beautiful new baby could have hepatitis B. And they had no idea that their future would be filled with hospital visits, blood tests, and a paralyzing fear of losing their child to this unknown liver infection.
Among the most difficult challenges they would ultimately face was whether to treat their child with a potent drug called interferon that required three painful injections each week and promised a lackluster 30 percent chance of success.
This was a decision the Kanes, a middle-class professional couple who live outside Washington D.C., never thought they’d be making when they adopted 10-month-old Morgan. In China, their daughter had tested negative for hepatitis B, so the couple assumed she would be free of the virus that has infected 60 percent of the Chinese population and chronically infects 10 percent.
Shortly after they returned home, Morgan was retested for hepatitis B, as recommended for all international adoptees. A week later, a nurse called with the results.
“I remember that call clearly,” Helen said. “I was at an outdoor restaurant having a cup of coffee with Morgan in her stroller when my cell phone rang. The nurse told me Morgan had a ‘touch’ of hepatitis. I got off of the phone and started crying. I called my husband, but it was too difficult to explain to him over the phone.” With that phone call, the family’s life was turned upside down.
“In the beginning, we were absolutely devastated,” Helen recalled. Tests indicated that Morgan had a high viral load (a lot of virus in her bloodstream) and that the infection was already causing significant damage to her liver. “Of course I had no idea then what the test results meant, or the significance of the various hepatitis B antigens and antibodies.”
The Kanes took Morgan to a pediatric gastroenterologist to the Johns Hopkins Medical Center. “I can still remember asking our doctor why we should treat Morgan, given the low chance of success and the difficulty of treatment,” Helen recalled. “Her reply was, ‘because you have to try anything you can to prevent her from ever needing a liver transplant.’ Her statement truly had a profound effect on our decision. We decided that even though the odds were low, we had to try.”
Four months after arriving from China, Morgan underwent her first liver biopsy. This is a procedure that involves removing a small sample of liver tissue with a surgical needle.
“One of the most difficult things to do was to sit with Morgan for nine hours while depriving her of food before the procedure,” Helen said. “She went from being a happy baby, to a quiet, withdrawn baby wondering why we wouldn’t feed her.”
“I’ll never forget carrying my little one into the operating room and trying to soothe her as they placed the mask over her face,” she continued. “Later, we could hear her screaming as we entered the recovery room. She was so angry with us! It was difficult trying to comfort a terrified baby when she has a board strapped to her hand and an IV hooked to it.”
That night at the hospital, Morgan received her first interferon injection. Later at home, the Kanes began to administer the injections three times a week. They designated a guest room that Morgan rarely played in as the “shot” room. “We would have everything ready for her so all we did was quickly give her the shot and then immediately calm her by placing her in a warm bath following the injection,” Helen recalled.
Morgan also underwent bi-weekly blood tests to monitor her response to treatment. “The interferon shots were tolerable, but the blood tests were very hard on her. Morgan could sense when it was time for a blood draw and became withdrawn. When she began to talk, I remember the pain I felt when I told her we were going to get her blood drawn and she screamed back, ‘No! No blood!’ When the words came out of her mouth, I was so taken aback,” Helen said.
As with most children who receive interferon for chronic hepatitis B infections, Morgan had few side effects from the drug. “She did experience some muscle and joint pain, and she was certainly more fatigued than the average child, but as a baby she had the luxury of sleeping, as opposed to adults who must resume work,” Helen said.
Despite the difficult treatment, Morgan’s personality blossomed. She was a cheerful and resilient patient with an outgoing personality. She quickly became a favorite among clinic staff.
Unfortunately, six months of interferon did not reduce Morgan’s high viral load or liver damage. “I remember talking with another mother whose daughter was also not responding to interferon treatment,” Helen recalled. “She told me she had finally accepted that her family would always be living with hepatitis B. Her statement was a wake-up call to me. It was the first time I realized we might be living with Morgan’s hepatitis for the rest of her life and I began to actively research hepatitis B on my own.”
Since interferon did not work, Morgan’s doctor recommended trying the oral antiviral drug called lamivudine (Epivir-HBV), which at the time had not yet been approved for children (it was approved for adults in 2002, and shortly afterwards for children).
At age 2 1⁄2 years, Morgan required a second liver biopsy before starting one year of lamivudine treatment. After nine months on lamivudine, Morgan began to respond to the drug and her viral load decreased to undetectable levels in the bloodstream, which meant there was a lot less virus attacking her liver.
Current drug treatments such as interferon or lamivudine rarely result in a “complete cure”, which is achieved only when the immune system gets entirely rid of the virus and then develops protective antibodies against future exposure to the virus. For Morgan, though, after a full year of lamivudine treatment, she tested negative for the hepatitis B virus.
By Christmas, Morgan tested positive for the protective antibodies – she had experienced a complete cure from a chronic hepatitis B infection. “It was the best Christmas present we could have ever received,” Helen said with tears in her eyes.
It has been three years since Morgan cleared the hepatitis B infection. Today, she is a bubbly, seven-year old with no signs of liver damage.
“It’s funny, we never did ‘celebrate’ like you might think we would when Morgan cleared the infection,” Helen explained. “We are still almost afraid to talk about it, as if it would tempt fate. We know Morgan will always be at higher risk for liver disease than someone who has never been infected. But we couldn’t be happier with her successful treatment.”