Son Clear's HBV-True Story 
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 Son Clear's HBV-True Story

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  Forwarded message:
  Subj: Son's Hepatitis B Takes His Mother on a Wrenching Medical Journey
  Date: 98-07-15 10:42:06 EDT

  ( St. Louis Post-Dispatch )

  IT'S NOT the end of the world," the doctor concluded.  But that's how it

  I had been back from Russia only two weeks with my newly adopted son,
  Benjamin, a robust 3-year-old.

  The trip had been difficult, and the adjustment at once thrilling and
  exhausting. I was grateful to have such a beautiful child in
  my life, and relieved that we had returned home safely to a new beginning:
  for me, for him, and for his sister, Barra, who had arrived from Calcutta,
  India, in 1987 at the age of 3 months. This was supposed to be a time of
  bonding and falling in love, of adjusting to a new name, a new language -
  and a new life.
  But it was not to be - not yet.

  The doctor was a pediatrician who had examined Benjamin upon our arrival in
  the United States.

  "I just got the final report back from the lab," she said. Choosing to start
  with the good news, she told me that he had tested negative for the AIDS

  Then she paused. "He is positive for hepatitis B. He has an active
  infection. He can transmit the virus to others."

  For a moment, I couldn't breathe. My first reaction was disbelief, then
  denial. She urged me to find a specialist.

  I must have shouted, "Oh, no! . . . Oh, no! . . . Oh, no! . . ." because
  Barra ran into the room, frightened by my tone. "What is it? What's wrong,
  Because I write about health policy for the Los Angeles Times, I already
  knew a lot about hepatitis B. And I knew it was grim.

  Hepatitis B can be deadly. It can kill swiftly or slowly - but either way,
  it is insidious. Over time, an active chronic infection like my son's can
  destroy the liver, resulting in scarring (cirrhosis), liver failure or liver
  Children and {*filter*}s are sometimes able to clear the virus spontaneously -
  seroconversion. About 1 percent do so annually.

  A bright spot in an otherwise bleak picture is that an effective vaccine
  does exist. And, luckily, my daughter and I had been immunized.

  The results of a series of {*filter*} tests, however, brought the worst possible
  scenario for my son. He was positive for surface antigen (an antigen
  indicates the presence of virus) and for the more specific "e" antigen. The
  latter was the most discouraging. Evidence of e antigen indicates that the
  virus is replicating, meaning the patient is highly infectious.

  Tests also showed that Benjamin's liver enzymes were elevated. While that
  means his immune system was fighting the virus, those enzymes ultimately
  could cause liver damage.

  In Search Of A Miracle

  Benjamin came home last November. We would spend the next six months in
  search of a medical miracle. It was a searing experience to confront the
  health-care community not as a journalist but as an anxious and vulnerable
  At the same time, I knew that with the sources I had developed, if a cure
  existed, I would find it.

  During the first weeks after diagnosis, I was distraught. I could not talk
  about my new son without weeping. I temporarily dropped the idea of sending
  announcements heralding his arrival. How could I share happiness when I was
  overwhelmed with grief?

  That Benjamin should be infected with a virus as serious as hepatitis B was
  particularly stunning because I had asked the adoption agency for a healthy
  child. Even though I knew that international adoption brings no guarantees,
  I hadn't expected any problems.

  The disease is endemic to Eastern Europe. Many of the youngsters adopted
  from that region were infected by their mothers during birth or through
  {*filter*} transfusions or contaminated needles.

  I do not know how Benjamin was infected. I do know that he received some
  inoculations as a baby and underwent a hernia operation.
  I had decided to adopt Barra - and then Benjamin - abroad because, as a
  single woman over 40, my options were limited. When Barra came, India and
  several Latin American countries were about the only places where an
  unmarried older woman could adopt. Since then, Russia has opened its doors
  to foreign adoptions.

  I wanted a boy of Gypsy heritage. I thought it would be a positive sign for
  my daughter to see another dark-skinned child join our family. I'd been
  waiting eight months for a referral when the adoption agency called.

  "We've just learned of a 3-year-old Gypsy child in Ufa. They say he's
  healthy. We have no other information about him. Do you want to see his

  Of course I did.

  After two days, the photo arrived. It showed a charming little boy with dark
  hair and dark eyes and a shy smile. Immediately, I knew he was the son of my

  The First Meeting

  I left for the former Soviet Union at the end of October, believing that
  Benjamin - then named Igor Lebedev - was destined to be my son.

  I flew to Ufa, an industrial town about 700 miles east of Moscow. A few
  hours after arriving, I was taken to the orphanage. As I sat nervously in
  the waiting room, a handsome, bright-eyed boy was brought before me. He had
  been told only that his "mama" had come to get him. I held out my arms. He
  hesitated. Then he laid his head on my lap, and circled his arms around my

  The orphanage officials assured me he was in good health. None of his
  documents indicated that he had been tested for hepatitis B.

  We flew to Moscow, where we were to stay for several days while waiting for
  our paperwork to clear.

  Two weeks later, we were home in America. And it was I who was struggling.
  Blissfully unaware of the medical time bomb ticking inside him, Benjamin
  began to adjust to his new surroundings. In my suburban Maryland home, he
  was on sensory overload. He pushed every button, opened every door. He
  obliterated the message on my answering machine. He traumatized our two cats.

  He bonded with me and quickly became attached to his sister, Barra.
  But after the hepatitis B diagnosis, I held back a little, afraid to get too
  close emotionally. Although I knew that people with chronic HBV infections
  often lived for years before developing problems, I kept worrying that he
  would die - and soon.

  I became resentful of parents whose children were healthy. I tried to
  comfort myself with the knowledge that far worse things had happened to
  other children.

  At the same time, I was horrified when a relative, one of the few who knew
  of his condition, asked thoughtlessly, "Can you send him back?"
  "No we cannot send him back," I replied, my anger barely under control.
  "We're not talking about a 90-day return policy on a car with a damaged
  It never occurred to me that I wouldn't keep him.

  Looking For A Cure
  I was using every resource in my medical Rolodex to obtain information about
  hepatitis B research. I learned that the National Institutes of Health in
  Bethesda, Md., was conducting a trial using interferon Alpha-2b in
  HBV-infected children. Parents were taught to inject the drug three times a

  About 30 percent to 40 percent of HBV-infected {*filter*}s treated with the drug
  go into remission - that is, they clear the e antigen. I knew nothing about
  the effects of the drug in children but decided to find out.
  I called NIH's leading hepatitis B researcher, Dr. Jay Hoofnagle, whom I'd
  interviewed for a story. He said the preliminary results with interferon
  were encouraging, and offered to give my name to Dr. Hari Conjeeveram, who
  was conducting the trial.

  Although I was becoming convinced that Benjamin should try interferon, I
  wasn't sure if I wanted to go through NIH or see a specialist who could
  prescribe it privately. The NIH would be free - but there was the
  possibility my son would be placed in a "control" group, for comparison
  purposes, and would not receive the drug.

  A U.S.">food and Drug Administration source recommended that I consult with
  Alan Lake, a pediatric gastroenterologist at Johns Hopkins University
  Hospital in Baltimore.

  "Congratulations on your new son," Lake said on the phone, causing the tears
  to start again. "And stop worrying. He's going to be fine."

  Taking A Chance

  I took my son to meet with Lake and asked about interferon.

  At the time, Lake was not keen on the idea. The drug was expensive. A
  four-month course of treatment for my son would cost at least $1,000 -
  wholesale. That would not include a hefty mark-up or the cost of syringes
  and other materials.

  Moreover, it would be an "off-label" use of the drug - because it was not
  approved for children - and my insurer would have to be persuaded to
  reimburse the cost.

  At this point, he suggested NIH.

  Lake and I watched my son tear around his office, turning the lights on and
  off, and punching the buttons on his phone. Lake chuckled. And I began to

  I did not want to lose this little boy.

  "I'm almost afraid to love him," I said, knowing it was already too late.
  "Love him - I'll write you a prescription for it," Lake urged.
  On Dec. 8, we met with Conjeeveram at NIH. Our discussion left me
  discouraged. First, Benjamin would have to undergo six months of screenings,
  and then - as I'd feared - faced a 50-50 chance of actually receiving the
  I returned to Lake, who had been unaware of the restrictions in the NIH
  study, and he agreed that Benjamin shouldn't wait. He said he would
  prescribe the drug if a liver biopsy confirmed the hepatitis B diagnosis.
  The procedure established that my son had HBV.

  The next hurdle was to persuade my insurer to pay for the drug.

  I'd worried about this the most. I'd heard of families whose physicians were
  unwilling to go to bat for them, and they had been denied. I was afraid the
  insurers would say that this was an "experimental" use of a licensed drug.
  My FDA sources assured me that an "off-label" use was not a sufficient
  reason to refuse reimbur{*filter*}t, and said they would fight for me.
  Lake wrote a very strong letter to my insurer, enclosing copies of existing
  studies. He also mentioned that he had reviewed his treatment
  recommendations for Benjamin with NIH researchers and FDA officials and had
  received their enthusiastic endor{*filter*}t. He was, in effect, signaling that
  we were prepared to do battle should they refuse.

  The insurance company agreed to pay.

  Most U.S. pediatricians, unaccustomed to seeing hepatitis B in children and
  unfamiliar with the research, would almost certainly recommend nothing more
  than a watch-and-wait attitude with periodic {*filter*} screenings - indeed,
  before we found Lake, that was the attitude of our pediatrician.
  Now, with the hope offered by interferon, I was slowly moving away from a
  life ruled by hepatitis B.

  And I was falling in love.

  I was charmed by the way Benjamin's face would beam and he would squeal with
  delight and run to hug and kiss me when I showed up at school to pick him
  up. "That's my mommy!" he would announce.

  Watching, And Hoping

  I gave Benjamin his first shot on Feb. 7.

  This is a child who runs away when I try to wipe his face with a washcloth.
  But he stayed absolutely still when he saw the needle. Somehow, he knew it
  was important.

  After two weeks, Lake drew more {*filter*}. He wanted to be sure the drug was not
  causing havoc with Benjamin's {*filter*} chemistry. The results showed no adverse
  side effects. But the liver enzymes were still elevated, the e antigen still

  Benjamin suffered only an occasional low-grade fever during the first few
  weeks of therapy.

  "Some kids just breeze right through," Conjeeveram said. Although we were
  officially out of the NIH picture because we were using a private
  specialist, we still talked by telephone. Conjeeveram said there is
  typically a drop in the enzymes, followed by a spike - known as a flare -
  which indicates the body's immune system is engaged in its final battle
  against the virus.
  Then, it is hoped, comes "seroconversion" - the point at which the body
  clears the virus.

  Four weeks later, Lake drew another {*filter*} sample. Benjamin had been on the
  drug six weeks. I wanted to see something - a drop in the enzymes.
  But Lake insisted that nothing would happen quickly.
  It was the only time he turned out to be wrong.

  A Time For Elation

  On a Wednesday, I called him, hoping to hear that the enzymes had dropped.
  He reported just the opposite. They were up, one of them by more than 100
  "I don't know whether this is good news, bad news or no news," he said.
  Then on Saturday, he called me. The rest of the lab report was in.
  "I'm going to give you an interesting weekend," he said.

  "Interesting is a very benign word," I replied. "I don't know what that

  "His e antigen came back negative," he said. "It may mean the levels of
  virus are so low that the test just isn't picking it up. But, even so, it
  means he's going in the right direction. I am ecstatic."

  I whooped.

  "What about antibodies?" I asked. "What about surface antigen?"
  "I didn't even run those tests," he said. "I didn't expect anything to be
  happening so soon."

  A couple of weeks later, I watched as the technicians drew more {*filter*} from
  Benjamin. It struck me what a stoic this little boy had become. He simply
  held out his arm.

  Two days later, my phone rang.

  It was Lake.

  "Tell me, tell me," I said.

  "Oh, I just called to say hello," he said, laughing, and I knew it had to be
  good news.

  "E antigen negative," he began, and I couldn't believe what I was hearing.
  "E antibody positive. Surface antigen negative. Surface antibody positive."
  He paused. "I'm the eternal optimist," he said, "but even I didn' t expect
  the results to be this good - and this fast."

  "He's cured?"


  It was over.

  He and other experts, including Conjeeveram, believe that Benjamin' s immune
  system probably had been seroconverting on its own - and got stuck. The
  interferon helped finish the job. Conjeeveram says they often see the same
  thing with {*filter*}s.

  "I doubt he would have been able to seroconvert without the drug, "
  Conjeeveram said.

  After Lake called, I drove to my synagogue. Benjamin was to receive his
  Hebrew name in a ceremony that Friday, and I needed to pick up a copy of the
  service so I would know what to say.

  I left the temple office with the envelope, and got into my car. I decided
  to open it up and read the lines I was to recite:

  "We are thankful for the many joys with which our lives have been blessed.
  Now this great good has come to us: a new life, a new child to love, the
  opening of a new chapter in the chronicle of our family' s existence. O may
  this child grow up in health and happiness, to become a blessing to family,
  friends and neighbors."

  Copyright ? 1994, St. Louis Post-Dispatch

  Marlene Cimons; 1994, Los Angeles Times, THE ILLNESS AND THE ODYSSEY A SON'S
  Post-Dispatch, 11-09-1994, pp 01F.

Wed, 03 Jan 2001 03:00:00 GMT
 [ 1 post ] 

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