--------------------------------------------------------------------------------

 
Read More Culture Stories

Massachusetts News
By John Maguire

June 24--If you have a baby at home, you also have the booklet about shot records that  Massachusetts requires. It’s pale blue, in a vinyl slip cover, and it says, “Massachusetts Lifetime Health and Immunization Record.”  When you look at it, you probably feel safe. Most people do.

But not Judy Lafler Converse, 38, of West Falmouth. When she looks at that blue booklet, it brings back a vaccine-reaction nightmare that began three days after she delivered a  healthy baby in November 1996.

Her baby, Ben, got a hepatitis-B shot when he was one day old—on November 6, in Falmouth Hospital. Three days later, on his first night home, he began screaming uncontrollably, arching his back, turning blue. A nightmare for Jim and Judy Converse—not to mention poor Ben—began. It receded in agonizingly slow stages, as the Converses went from pillar to post—with no one able to say what was wrong with Ben.

The authorities claimed his steady all-night screaming, his inability to eat, his severely delayed development and his damaged reflexes were somehow normal. No way, they said, could his nerve damage have come from a vaccine reaction.

Today, Ben is a red-haired, blue-eyed two-and-a-half year old. He’s been in special physical therapy for 8 months, and he’s starting to do much better, though his development deficits are still profound. Judy and Jim Converse are worn out, putting their lives back on a normal track. But they no longer believe the idea that all American vaccines are equally well-tested and harmless. Judy has become a crusader against the unquestioned status quo in Massachusetts vaccination policy.

Hepatitis-B vaccine, for activists in this state and nationwide, is now the subject of a major effort. Many parents in this state, and thousands nationally, are drawing back from mandatory vaccination programs that increasingly seem more dangerous than they are worth.  (Another focus for protest is the chicken pox vaccine. See below.)

For the moment, the focus for parents is the hepatitis-B vaccine called Recombivax . Hundreds of parents, like Judy Converse, say their kids became nerve-damaged, developed arthritis or even died after receiving the shots. The suffering of children is a powerful stimulus for action, and a national effort to question this vaccine program is underway. The parents have gotten national press coverage and congressional hearings. The medical establishment is starting to look upset at the breadth and intensity of protest that Judy Converse and others are bringing out. How the hepatitis policy of Massachusetts came into being and how it affected the Converses  is a fascinating story. Parents of infants and small children may want to pay attention—because if the Converses and their allies are right, in a few cases,  hepatitis-B vaccine reactions can be tragic.

Mom and Ben

The Converses are educated, aware people. Judy has a Masters in Public Health degree from the University of Hawaii, and is a registered dietician. Chris, 39, is a mechanical engineer whose consulting practice includes the Woods Hole Oceanographic Institution.

Their son, Ben Converse, was born at Falmouth Hospital on Nov. 6, 1996. He was full term. “He was doing well on day-of-life number one,” his mother, quoting the medical records, told Massachusetts News.  Ben’s reflexes were quite good. He scored 9 and 10 on the 10-point Apgar scale. His sucking, grasping, swallowing and so-called Moro defensive reflexes were all recorded as good.

Baby Ben stayed with his mom, except on the second night when he was taken into the nursery and his Mom got to sleep.  On the third day he came home. And when his parents brought him in the door, he screamed. They fed him, they walked him. He could not be soothed. His parents were astonished and frightened.

“He did that for four hours straight,” Judy Converse said. “We were just shocked. We called the maternity ward but it was like they’d already forgotten us.

We called and called everybody. We tried to reach a doctor. Everyone said this is normal. No one mentioned ... the possibility of a vaccine reaction. We knew this was not normal.  Finally, my husband and I decided to take shifts  just holding him while he screamed.”

She slept, setting the alarm for 1:00 a.m.  When it rang, she woke up to take her shift, expecting to see father and child resting quietly—but it wasn’t to be.

“My husband was just trudging around the kitchen.” Ben was still in distress. “I called the maternity ward again. They told me to put him on the clothes dryer and turn it on.... That will make him stop crying—as though the crying was just annoying....”

She tried it. She put three-day old Ben on top of the dryer in the laundry room at 2 o’clock in the morning on his first night home and turned the dryer on. She slept on the floor. He woke up at dawn a little calmer, she said—but not better.

Converse says she assumed that first nightmare night was an exception—things were bound to get better.  But they didn’t . “Nothing was the same after that, ever.  He was a different kid. A whole litany of problems ensued from that day on ... and they never went away.”

His mom’s first glimmer of understanding came when Ben was 28 days old. Judy had brought him in for his check-up, still obsessed with what was wrong with her baby.  She remembers watching them give him the  hepatitis-B shot: “And then I went, ‘Oh yeah.’ I was standing there watching them do this, and realizing, ‘This is what’s wrong, this is what’s wrong.’ ”

She checked in his blue vaccination book and saw that the 28-day shot was the second shot. The first had happened somewhere in the hospital—without her permission—out of her sight. It was that first shot, she thought, that had set it all off: the screaming, the food allergies, the inability to sleep through the night, the damaged reflexes. The first shot, she thought,  must have happened in the hospital the night they took Ben away from her and kept him in the nursery.

Later, as she heard about hepatitis-vaccine reactions, she decided her child was probably  “demyelinating.”  He was having an auto-immune response.

The vaccine had caused his body to go into a cycle where it was eating the fat-and-protein covering off its own nerves. That must be why he had lost his infant reflexes. (For they were gone—the Moro reflex gone, the sucking reflex extremely weak.) He was in a state, she thought, of active nerve destruction—maybe a mild relative of the nerve destruction that happens with multiple sclerosis.  No one physician would confirm this, though.

Damaged Children

Bonnie Dunbar, Ph.D., is one of the pivots around which the current national storm on hepatitis turns. She is a researcher in vaccine development in the Department of Cell Biology at Baylor Medical College in Houston, Tex. Her credentials are strong. She became concerned about hepatitis-B vaccines when two of her lab workers developed reactions in a single year, 1994.

When told about Ben Converse’s problem at Day Three of his life, Dunbar told Massachusetts News: “There are more than 1,200 reports of that inconsolable-screaming syndrome after hepatitis B vaccination.”  She referred to the Vaccine Adverse Event Reporting System (VAERS), one of the largest databases on vaccine problems in the US. More than 25,000 adverse reactions to hepatitis B vaccination are on record there. Though there may be duplicate reports, Dunbar and others believe there are many unreported adverse reactions.

Dr. Dunbar testified in Washington, D.C. on this subject in May.  “I am getting three or four of these reports of damaged children a day,” she said. “I have a call on my machine today from a doctor who has a child that was severely damaged.”

How could a vaccine that might, just might cause death or nerve damage, have come into use?

She says the adverse reaction studies that were done before the vaccine was approved only looked for negative effects in a five-day period after the shot—and some autoimmune problems take up to 60 days to develop. Secondly, there is a racial component that was not studied, said Dunbar. She says reports in the VAERS system suggest that these severe reactions happen to Caucasians more than to other races—Asians in particular seem safe from these reactions.

Dr. Dunbar, whose life now revolves around this project, says far more research is needed to find out why people are getting sick, who is at risk to get sick, and how to make the vaccine better.

Vaccinate Now, Worry Later

Most Boston doctors go with the massive mandatory vaccination program—they have little choice, it’s the law—but keep silent about it. One exception is Dr. Richard Moskowitz, a general practitioner in Watertown. He sees the current controversy as stemming from a couple of basic issues in the field of immunization.

“You might ask,” he told Massachusetts News, “what point is there in shooting up little newborn babies to protect against something they are not at risk for? The answer seems to be, ‘Let’s shoot em up now, while we have them under our thumbs. It’s can’t hurt, right?”

“The assumption is that vaccines are uniformly safe and beneficial across the board, but that assumption is mistaken.”

“We also seem to believe that it’s in our interest to vaccinate as many people against as many diseases as we can.” He wonders if that’s true. “It’s becoming a lot easier to make vaccines,” Moskowitz says.

“Now the bio-tech firms are cranking them out as fast as they can go.”

Moskowitz wonders who will decide when a health threat is serious enough to warrant a big vaccine campaign?

“It ain’t you and me,” he told Massachusetts News. “It’s the equivalent of a smoke-filled room in Washington.”  In that room are the doctors from the American Academy of Pediatrics, the Centers for Disease Control, the Food and Drug Administration and the pharmaceutical corporations. They discuss, and they form the consensus about which disease to vaccine next for.

Dr. Moskowitz, like the lay vaccine activists, see pediatricians as cowed, reluctant to resist the combined influence of the CDC, the American Academy, industry and the new state laws.

This is why, he says,  physicians now “have knuckled under” and are giving every child a hepatitis vaccine which seven years ago was regarded as needed only by nurses.

But the pressure to administer new vaccines goes on.  Now doctors are scratching their heads over the need for a chicken-pox vaccine, since that is a childhood disease that everyone used to get and survive quite well.

According to Moskowitz, doctors are asking, “When is enough enough?”

How Parents Can Keep Informed

Debbie and Peter Bermudes of Arlington want parents to know more about vaccines and to make more informed choices about their kids’ shots. They have a large mailing list, which they call the membership of the assachusetts Citizens for Vaccination Choice. (PO Box 1033, East Arlington, MA 02474.) They and their network have given speeches, sent out mail, and produced proposed bills for the state legislature.

“We started this,” Debbie Bermudes told Massachusetts News, “because I once worked as an occupational therapist with some kids who had been injured by the DTP vaccine, and when I became pregnant, I questioned my baby’s need for the DTP vaccine.” (DTP is the standard combination vaccine for diphtheria, tetanus and whooping cough, which doctors call pertussis.)

Her physicians were unwilling to take her worries seriously; nor did they give any credence to her own experience with damaged children.  So she founded this group. It lobbies for more vaccine information and more choice. It networks with other groups, especially the National Vaccine Information Center in Washington, D.C. (NVIC is at 800-909-SHOT or www.909shot.com).

At the state house, the group proposed bills to give parents seven days to think about a vaccine, and the right to refuse it. They got nowhere. Said Debbie Bermudes: “Their attitude was, ‘Are you a doctor?’ ”

“Our mission is just to insure that parents have access to information and the right to make informed decisions,” she said. Although physicians pooh-pooh her group, she is not bitter. “I don’t think the doctors are being malicious,” she said. “They truly want what is best for the child, but they are being taught only one side of the issue.”

She doesn’t know of many hepatitis-B reactions in the state right now, she told Massachusetts News.  Bermudes is more concerned about the mandatory chicken pox vaccine, which is coming soon. “We have 1,500 people on our mailing list for that subject alone,” she said.  She has filed a bill that would allow parents to opt out of the chicken pox vaccine.

Now that so many vaccines are mandated, doctors and health officials are getting careless about parental consent.  When she wrote to Dr. Susan Lett, medical director for immunization at the Massachusetts Health Department, to ask why hospitals were not bothering to get parental consent for hepatitis vaccine,  Bermudes says she was told, “We’re just following the CDC guidelines.”

It’s not easy getting the word out to concerned parents. One Worcester public school where Debbie Bermudes had been scheduled to give a parent-talk about vaccines and consent issues, she says, checked on her background and canceled the talk when they found she was not going to back the health department’s policy.

Exempting Your Children

How could it happen that, in a very small but real number of cases, people are having severe reactions to this vaccine, while the CDC and the FDA were saying “no reports of any serious reaction to the vaccination?"

The current situation with hepatitis-B arose out of several conflicts and events. First came the development of the vaccine in the late 1980s and the apparent success on the island of Taiwan in virtually wiping out hepatitis and liver cancers. Then came the U.S. approval of this vaccine in the early 1990s, and its recommendation to those known to be in high-risk categories, like nurses who might get stuck with needles. Next--expansion of the program, as U.S. health planners got their sights on the idea that they could wipe out liver cancer in the United States, as had been done on Taiwan.

The CDC began its war on hepatitis. Assuming that the proper tests had been done and that the vaccine completely safe, CDC issued guidelines and the states implemented them, requiring more and more children to have hepatitis-B vaccinations at various checkpoints of their lives: on entering day care, kindergarten, high school.

In 1999, about seven years after the beginning of the national hepatitis program, the health planners’ dreams of a perfectly immunized U.S. is almost within reach--but now a small group of parents, scientists and statisticians is standing up to shout,  “Stop!”

What comes next? Hard to know. But if you don’t want a child of yours to get a vaccine, the thing to do for now is talk with your doctor—and sign a religious exemption form. That’s what Judy Converse would do.

Ben is Rescued

Little Ben Converse, underweight, pale, with shiners under his eyes, whom no one could treat, finally began to get better when his mother took him at age 22 months to Occupational Therapy Associates in Watertown. They didn’t fight her diagnosis of vaccine damage nor did they care what the doctors had said. They recognized that Ben really did have nerve damage.

They diagnosed it as Sensory Integration Syndrome, and ordered a home-centered therapy plan using special toys and equipment. "It's made Ben a much happier kid," his mother says.

The special therapy stuff in his home includes three different special swings, rings, ropes, giant rubber bands, a weighted blanket--all kinds of things to get him to push and pull, moving the large muscles in his arms, legs and back.

Now Ben’s a blue-eyed, red-haired toddler, light at 33 pounds.   His movements are still odd, flaccid, and off-balance, because his balance system is still off. Mom says that's why he likes to sit still and play with small toys rather than run and jump about. He still has seizures--he had one last month

“He hates to eat,” says his mom. “He still wants to suck.” But she does get food into him: his favorite foods are puddings, chocolate kisses, and sunflower seeds. “He likes to really grind down on them,” she says.

Judy Converse is glad that she fought the medical establishment, including the hospitals and the pediatricians and the specialists. She had a long conversation recently with Barbara Loe Fisher, president of the National Vaccine Information Center recently, and found a vindication.

“She said, ‘your instincts were absolutely right,’” Judy Converse told Massachusetts News.  “He did have an autoimmune defect.’  I think we rescued him. He’d be either dead or profoundly autistic if we hadn’t.”