COLUMN ONE : Seeking a Miracle for Her Son : After bringing her newly adopted 3-year-old home from Russia, a reporter learns her little boy has a devastating illness. She must confront emotions and issues she covers on her beat in a struggle to save his life.

By MARLENE CIMONS

Sept. 4, 1994 12 AM PT

TIMES STAFF WRITER

WASHINGTON — “It’s not the end of the world,” the doctor concluded.

But that’s how it felt.

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 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 on 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 virus.

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 droned on, but only pieces of what she was saying registered. 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, Mommy?”

Because I write about health policy for The 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--called cirrhosis--liver failure or liver cancer.

The disease is endemic to Eastern Europe. Many of the youngsters adopted from that region were infected by their mothers during birth or through blood transfusions and contaminated needles while living in orphanages.

I do not know how Benjamin was infected. I do know that he received some inoculations as a baby and underwent a hernia operation.

Some people with hepatitis B become sick and die relatively quickly, or recover and develop a lifelong immunity. Others remain symptom-free but carry an active infection that gradually destroys the liver. Children often appear healthy while the virus gains a toehold and begins to replicate because their immune systems are not fully developed.

Both children and adults are sometimes able to clear the virus spontaneously--seroconversion. About 1% 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 blood 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.

WE NEED A MIRACLE: How could I share happiness when I was overwhelmed with grief?

Benjamin came home last November. We would spend the next six months in search of a medical miracle, if one existed. It was a searing experience to confront the health care community not as a journalist but as an anxious and vulnerable mother.

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 agency for a healthy child. Even though I knew that international adoption brings no guarantees, I hadn’t expected any problems.

After all, my first experience had been good. Barra had been malnourished when she arrived, but she had blossomed into a beautiful and healthy girl.

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.

It seemed fitting to turn there to complete my family, since my parents had been born in Ukraine.

I wanted a little boy of Gypsy heritage. I thought it would be a positive sign for my daughter to see another dark-skinned child join our family. And I believed asking for a Gypsy would increase my chances of getting a healthy child. Gypsy children are typically abandoned because of their heritage, while most others are available for adoption because of medical problems.

But I’d been waiting eight months for a referral and was on the brink of selecting Dmitri, a 5-year-old in Moscow--older and fairer than the son I’d envisioned.

On the evening I was about to say, “OK, I’ll take Dmitri,” the 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 picture?”

Of course I did.

After two long 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 dreams.

THE FIRST MEETING: He laid his head upon my lap, and circled his arms around my waist.

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

I flew to Ufa, an industrial town about 700 miles east of Moscow. I knew only that my son had been abandoned at birth and had spent his first six months in a hospital. After that, he had lived in an orphanage.

A few hours after arriving in Ufa, 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 upon my lap, and circled his arms around my waist.

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.

Benjamin took to Rima, our hostess, a grandmotherly retired nuclear physicist. He followed her from room to room--preferring her to me--and cried whenever she left the apartment. He had been separated from the only home he had known. She spoke Russian, and I didn’t. I knew when I got him home that things would be different and he would turn to me. So I tried to be patient.

In the meantime, I learned a few key Russian phrases: “Are you hungry?” “Are you thirsty?” “Do you have to go to the bathroom?” “Don’t touch!” and “I love you.”

Even though he had become devoted to Rima, by the time we were ready to leave I think he knew what was happening. At one point, he told Rima, looking at me: “That will be my mama.”

Now, 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 cozy and cluttered 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, who now had an instant playmate, decided she adored him--most of the time.

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 just about the time I was trying to come to grips with Benjamin’s condition, Polly Klaas’ body was found in California.

“I bet her parents would give anything to be in my shoes,” I thought. “At least my son is alive.”

Despite my fear and apprehension, I found myself drawn ever more closely to Benjamin.

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 bumper.”

It never occurred to me that I wouldn’t keep him.

THE RAMIFICATIONS: Certainly the school had to be told. How would officials there react?

As I wrestled with my own emotions, I also was forced to confront a more practical issue: Whom to tell? I was terrified that Benjamin would be shunned--much as some children with AIDS are. I was afraid that the parents of Barra’s friends would refuse to let their children come to my home.

What was my responsibility to parents of Benjamin’s friends who invited him over to play? Did they have a right to know? What about baby-sitters? Although the risk of transmission is considered extremely low--even in people with active infections--did I have the right to make that decision and take such a chance?

Benjamin was supposed to start preschool in a few weeks. Certainly the school had to be told. How would officials there react?

I knew the school legally could not refuse to admit him. The Americans With Disabilities Act, which bans discrimination in the private sector, defines illnesses such as AIDS and hepatitis as disabilities. But that failed to reassure me. I knew I could force the school to take him--but I wanted to be sure they would treat him like any other child.

I had been writing about the political and social ramifications of AIDS for years. To be sure, hepatitis B is not as swiftly or as invariably fatal as AIDS. But many of the issues, particularly involving transmission, are identical. Because of AIDS, I had seen children, too young to understand what was happening, thrown out of school, their families driven from their homes. I had seen adults lose their jobs, their friends, their families.

I couldn’t bear the thought of either of my children being subjected to this kind of cruelty.

As a journalist writing about these topics, I have always respected peoples’ desire for privacy--because I have seen how insensitive the ignorant and uneducated can be. But I also believe that being open goes a long way toward removing the stigma--and that hiding something only sends the message that there is something to be ashamed of.

Now I was living it.

Was I willing to stand behind my own philosophy?

I was advised by parents of other HBV children to keep Benjamin’s condition secret. But secrecy simply didn’t feel right. Maybe I needed the emotional support of others. My instincts told me that if I was open, people would respond appropriately.

I told the full story to my closest friends and family, and my regular baby-sitters. If neighbors invited Benjamin home to play with their children--and I would not be present--I decided to tell them.

Most of the time, the typical reply was: “Oh, OK. Thanks for telling me.”

There was a blip of anxiety at the preschool but, overall, the staff was wonderful. The director delayed my son’s entry so she could gather information about hepatitis B, and educate her staff.

I put the school in touch with the Centers for Disease Control and Prevention in Atlanta. Their advice was clear: The staff of a day-care center, like that of a medical facility, should practice universal precautions with all children. This means wearing gloves when changing diapers and touching blood.

One CDC official told them: “You know about this child. He’s not the one you have to worry about. You have to worry about all the ones you don’t know about.”

In a city like Washington, with its diplomatic families and other foreigners, chances were overwhelming that Benjamin was not the first HBV-infected child in the school--or in the community.

The center offered its staff free inoculations. Some accepted; others felt comfortable without them. One teacher learned that she had already been exposed. That only reinforced the CDC message: There had been infected children the center didn’t know about.

When Benjamin started school, he was warmly welcomed. And I noticed, right from the start, that there was no shortage of hugs.

Nevertheless, his health brought a perilous new meaning to the most innocent rites of childhood--a scraped knee or a cat scratch. Every time he fell, I held my breath to see if he was bleeding.

When my unvaccinated mother came to visit, I had to hide her toothbrush. Brushing was a new experience for my son, and--like everything else that was new--he couldn’t get enough of it. But brushing makes gums bleed, and blood can transmit the virus.

Benjamin’s first trip to the dentist was an exercise in frustration and hostility. The dentist, who had been vaccinated, donned a plastic face shield and other protective gear. This would not have annoyed me if I’d seen her do this with other children. But I’d never seen her wear anything more than a mouth mask and gloves.

One night, the kids got into a wrestling match, and Benjamin’s fist ended up in Barra’s mouth. When the crying stopped, his knuckles were bleeding. And so were her gums.

Even though she had been vaccinated, I panicked--fearful that the vaccine might not have taken effect. The next week, I had her blood tested to be sure she was protected, and was reassured.

SEEKING A CURE: Interferon already was licensed, and had an excellent safety record.

Meanwhile, I was using every resource in my medical Rolodex to obtain information about hepatitis B research. I learned that the National Institutes of Health was conducting a trial using interferon Alpha-2b in HBV-infected children, most adopted from Eastern Europe. Parents were taught to inject the drug three times a week.

About 30% to 40% of HBV-infected adults 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.

Conjeeveram called that night. He was a soft-spoken physician from India who responded warmly when I told him about my daughter. He seemed eager to know more about my son, and whether he would qualify for the NIH protocol.

NIH, the world’s premier biomedical facility, sponsors thousands of studies here and around the world. Patients typically are referred to NIH by their doctors, usually when there is no other treatment available, or when conventional therapies have failed. Participants have to meet certain entry criteria. The care is free, and NIH often will pay for travel.

Although such research is not without risks, interferon already was licensed, and had an excellent safety record.

Conjeeveram was very enthusiastic about interferon, although he cautioned that the numbers of children in whom the drug had been studied were small. He said that about half of the children in his study had cleared the e antigen after four to six months of interferon therapy. According to my sources at the Food and Drug Administration, studies in Belgium and Spain had reported encouraging results.

Furthermore, unlike adults, who typically experienced severe flu-like side effects, children seemed to suffer little more than a low-grade fever and mild muscle aches.

TAKING A CHANCE: ‘I’m almost afraid to love him,’ I said, knowing it was too late.

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 that my son would be placed in a control group, for comparison purposes, and would not receive the drug.

I decided to consult with a private specialist first. An FDA source recommended Alan Lake, a pediatric gastroenterologist at Johns Hopkins University Hospital in Baltimore. He was the best in the area, my source said.

“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.”

Benjamin and I drove to Baltimore to see Lake the following week. When Lake appeared, he grinned at Benjamin, and began speaking to him in a Donald Duck voice--an approach that almost certainly engages most of his young patients, but only puzzled a little boy who had been in America less than three weeks.

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 markup or the cost of syringes and other materials.

Moreover, it would be an “off-label” use of the drug--since 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 choke up.

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. His explanation of the protocol 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 receiving the drug.

“I have to be honest with you,” I told Conjeeveram. “I respect the work you are doing, but I don’t want my kid to be a control. I want him on the drug. I want to get it privately. If you were me, what would you do?”

Conjeeveram, the father of a boy close to my son’s age, looked at me soberly for a long time. He was a scientist. His study was important, and it was far from being fully enrolled.

“I would do exactly what you’re doing,” he said.

Nevertheless, he urged me to stay on the NIH track, in case I was not successful in getting the drug outside the study. It made no sense to stop the NIH clock, and have to start from the beginning if I failed.

So we began the first of three months of regular visits there.

I returned to Lake, who had been unaware of the restrictions in the NIH study, and 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--nothing else--and that the liver was not yet scarred.

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

I’d worried about this the most. In gathering information about hepatitis B and interferon, 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 reimbursement. Moreover, they said that FDA officials routinely intervened with insurers to support off-label uses, if the treatment was considered the “standard of care.” They said they believed that Benjamin’s case fell into such a category--and they would fight for me.

Lake wrote a very strong letter, enclosing copies of existing studies. He also mentioned that he had reviewed his treatment recommendations for Benjamin with NIH researchers and FDA officials who had studied the interferon data, and who had read Benjamin’s medical profile, and that he had received their enthusiastic endorsement. He was, in effect, signaling them that we had the backing of experts and were prepared to do battle should they refuse.

Without apparent hesitation, the insurance company agreed to pay.

Benjamin appeared to be an ideal candidate for interferon.

His enzyme levels were elevated, indicating his immune system was already fighting the virus and was likely to respond favorably to the drug. In addition, his viral DNA levels were low, meaning that--even though the virus was replicating--he apparently had a small viral load, which should make the virus easier to clear.

Two weeks later, I was sitting in Lake’s office again, learning to fill a syringe and tap out the air bubbles. Then he stood, rolled up his sleeve, and made me give him a practice shot.

Emotionally, I had shifted into a new gear. I was beginning to feel that the drug was going to work.

And I couldn’t help but wonder, as my optimism began to grow, about those parents who did not have the contacts in the medical community that I had. Where could they go? What would happen to their children?

WATCHING, HOPING: ‘Some kids just breeze right through,’ Conjeeveram said.

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 blood screenings--indeed, before we found Lake, that was the attitude of our pediatrician.

Also, I began thinking about how close I’d come to selecting another child. And how I’d learned about Benjamin at virtually the final second. The more I thought about it, the more convinced I became that he had come to me for a reason. He almost certainly would have died at an early age if he had stayed in Russia. They didn’t even know about his infection.

Moreover, horrifying as it now seems to me, I likely would have turned him down if I’d known in advance about his infection.

Now, at last, with the hope that was being offered by interferon, I was slowly moving away from a life that was 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 to the teachers.

And I was amazed by his rapidly developing English and by his growing independence. “No--by self!” he insisted when he wanted to do something without help.

I remember the day he came to me and said: “Mommy, my tummy hurts. Need more doctor.” I was so thrilled by his sentence construction that I momentarily forgot about his symptom.

I gave him 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 blood. He warned me not to expect to see any changes. He just wanted to be sure that the drug was not causing havoc with Benjamin’s blood chemistry. The results showed no adverse side effects. But the liver enzymes were still elevated, the e antigen still positive.

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, we still talked by telephone. I asked Conjeeveram what to expect. He said there is typically a drop in the enzymes, followed by a spike--known as a flare--which indicates that 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 blood sample. Benjamin had been on the drug six weeks. I was beginning to feel discouraged again after my initial euphoria. 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.

TIME FOR ELATION: ‘Even I didn’t expect the results to be this good,’ Lake said.

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 units.

“I don’t know whether this is good news, bad news or no news,” he said.

I took it as good news. At least something was happening.

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 means.”

“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.”

He recommended that we return in a couple of weeks and he would run the complete set of tests.

We did, and I watched as the technicians drew still more blood. 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?”

“Yes.”

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 adults.

‘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.

I put my head down on the steering wheel and began to cry yet again--this time, finally, for joy.