Polio: Still Out There, Still Dangerous

polioLast year, my 6-year-old son, David, took karate lessons. For most parents, the occasion would be just one of many milestones in their children’s lives. For my wife, Kathy, and me, however, it was much more than that. It wasn’t too long ago that we thought our son might never walk, first because of autism, and then…

Like his sister, Liz, six years older, David was the perfect baby-sleeping through the night after only a few weeks, exploring and crawling at 6 months, and constantly flashing a smile. Liz was an enthusiastic “third parent,” always ready and willing to hold and feed him.

When David was 5 months old, we took him to the pediatrician for a “healthy baby” visit. In the examining room, Kathy and I held him as he was given a sweet, pink oral polio vaccine followed by a shot for DPT (diphtheria/ pertussis/tetanus). Suddenly his bottom lip started quivering, and he let out a bewildered cry. For the next few days, he had a low-grade fever, but we knew that isn’t unusual after an immunization. Yet we were alarmed when the fever shot up to 102 degrees and a rash broke out all over his body. We rushed David back to the doctor, who assured us that the rash probably resulted from the fever and would go away. It did, but David continued to have episodes of high fever for several weeks, though each time his temperature would go down within 24 hours of giving him children’s acetaminophen.

For the next few months, David appeared to be developing normally. But when he was about 9 months old, we began to notice that he tired easily. One day, his baby-sitter told us that he was no longer crawling. In disbelief, we immediately got down on the floor and called for him to crawl to us. Instead of his usual smiles and excited leg kicks, he just laid on his stomach, moving only his head.

The pediatrician wasn’t sure what caused David’s sudden weakness. He thought that it was probably a virus and sent us home to keep an eye on him. But after several days with no improvement, we decided to take him from our home in a Virginia suburb to Children’s National Medical Center in Washington, DC. After three days of tests, doctors concluded that David had suffered a neurological injury known as “interior horn cell damage” that had caused both legs to be severely weakened. They didn’t know the cause at the time, so it was classified as “unknown etiology,” and his condition was referred to as “poliolike.” Kathy asked if it could have anything to do with his vaccination, but the young doctors–who’d never seen a case of polio–dismissed the idea.

We brought David home from the hospital and cried every night, worried and uncertain about his future. The doctors seemed to have very few answers, and there were no guarantees. What we did know was that our lives would never be the same again. There would be weekly visits to neurologists, orthopedists, and physiatrists, as well as the physical therapist. We were encouraged when his left leg started to return to normal; but the right leg was stiff as a broomstick with no muscle tone and a withered foot that simply dangled.

David was fitted for a brace on his right leg, and the physical therapist showed us how to do daily leg massages and exercises between weekly sessions in her office. We made frequent visits to a pediatric neurologist who tested for any changes in David’s nervous system. And we spent a lot of time at the pediatrician’s office, since David often had an ear infection, strep throat, and a chronic cough. He was constantly on antibiotics. At the time, we chalked that up to the fact that kids are constantly picking up viruses. We cried tears of joy–and relief–when David took his first steps at 16 months.

Then, when David was about 2 1/2, he complained of pain in both legs. We were referred to rheumatologist Stephen Ray Mitchell, M.D., associate professor of medicine and pediatrics at Georgetown University Medical Center, who diagnosed arthritis in David’s knees and ankles. He also did some blood tests. A week later, we sat in Dr. Mitchell’s office as he told us that David had Bruton’s, a rare genetic disorder that contributed to the arthritis and left him without a fully functioning immune system. That explained why he was constantly sick with infections.

But the most devastating news was that David had polio. Because of his undiagnosed immune deficiency, he’d contracted the disease from the vaccine given to protect him from it. We were both haunted by images of the crippled children of the 1940’s and 1950’s–some in iron lungs.

While Kathy concentrated more on David’s daily medical needs, I tried to learn as much as possible about the disease that robbed my son of a normal life. I went to the library to research polio immunization, and the more I learned, the angrier I became. I discovered that there have been two polio vaccines in the United States since the 1950’s-the inactivated injectable Salk vaccine and the live (albeit weakened) oral Sabin vaccine. Forty years ago, when the wild polio virus was still circulating in the United States, the Sabin (oral) vaccine was considered preferable for mass immunizations because the virus’s presence in the stool would also convey immunity to other family members. That’s something the Salk vaccine cannot do. In addition, the drinkable Sabin vaccine was considered less traumatic for kids than an injection.

Public health officials had long known that at least eight to ten people each year would contract polio from the oral vaccine. Approximately one quarter are babies like David, with undiagnosed immune deficiencies. (But for unknown reasons, not all children with immune problems contract polio from the oral vaccine.) The others are healthy children, or adults who have immune deficiencies or who were inadequately immunized against polio as children and later come into contact with children recently given the oral vaccine. This risk was considered acceptable for the good of society at large as long as there was wild polio virus and a risk of epidemics. But what shocked me was that the wild polio virus had stopped circulating in this country in 1979. Yet we still were using the vaccine that had the potential, however slight, of causing the disease rather than preventing it.

As I looked at David every day, I began to count our blessings for all the joy he brought. He learned to put on and remove his brace and by age 3 could dress himself. At 4, he insisted on getting a bunk bed–just like his friends and one of his proudest first accomplishments was climbing to the upper berth. I became determined that something had to be done to stop these “accidents” of prevention. I sent letters to the Centers for Disease Control and Prevention (CDC), one of the main organizations that sets immunization policy in this country, members of Congress–even the president. My message was simple: “Since wild polio has not existed in the United States for nearly twenty years, isn’t it time that the government adopts guidelines that would encourage the use of effective and safe ‘killed’ polio vaccine, or at least provide more information to parents in order to prevent more victims like David?”

I received some polite responses but nothing more. So I took my case directly to the public and wrote dozens of letters to newspapers and television news programs. Even then, although I received some sympathetic calls, no one was interested in David’s story. Then I contacted the National Vaccine Information Center (NVIC), a nonprofit educational group in Vienna, VA, and discovered that it had also been fighting this frustrating battle.

Finally, because of my contact with the NVIC, I was invited to testify before an Institute of Medicine conference in Washington in June 1995. After four years, I would now have a chance to tell David’s story and the forgotten stories of the more than 100 other children who have contracted polio over the past decade. I told of a seemingly healthy boy who, overnight, lost the use of his leg. I described in vivid detail David’s daily struggles, sadness, and triumphs–a 5-year-old crawling up and down our stairs, covered with bruises from falling while trying to do things his friends could do with ease. A boy who thought it was normal to see doctors every week, who still relied on a stroller or the arms of his father to take a long walk. I acknowledged that it was too late for David, but not too late for others who might be future victims of a polio-vaccine policy that plays Russian roulette with children’s lives.

Within days, there was a newfound interest in David’s story. The Washington Post started the bandwagon, and it was quickly followed by USA Today, CNN, and a handful of other news organizations. As a result of all this coverage, the NVIC received more than 20,000 telephone calls. Other than behig amused by seeing himself on television and in the newspaper, David seemed oblivious to all the attention. Liz, on the other hand, who had always seemed to resent the extra attention given to her little brother, finally began to understand and appreciate the effort we were making for David’s sake. In many ways, this was the most Important step of all for our family.

Last June in Atlanta, the CDC Advisory Committee recommended the first substantial change in the polio-vaccine program guidelines in more than 30 years. I stood with other families representing the more than 100 victims of vaccine-associated polio and listened to the panel conclude that we could no longer justify the fact that the only new cases of polio in the United States each year are those contracted as a direct result of the oral polio vaccine when there is an equally effective alternative available.

The committee proposed phasing in new guidelines so that the most vulnerable–infants 4 months old and younger–would receive two immunizations with the injectable poijo vaccine, followed by two doses of the oral polio vaccine, beginning at 12 to 18 months of age. The new guidelines would also allow an all-oral or an all-injectable schedule if parents requested it. Finally, doctors would be giving parents an informed choice. What’s more, members of the CDC committee also made it clear that it would be looking to rely less and less on the use of the oral vaccine.

When I came home from Atlanta, David was beaming. “You won, Dad!” Actually, when the CDC’s director, David Satcher, M.D., formally approved the advisory committee’s recommendation last September, it was a victory for all the children who might have followed in David’s halting steps. The changes will be published and distributed early this year.

Despite the challenges, David’s story is not one of despair. Now in the first grade, he tires easily and falls frequently but gets up without a whimper and starts again. During the past three years, he has broken four braces–a sign of his resolve that nothing will keep him from doing the things other kids do. Last fall, he learned to ride a two-wheel bike–without training wheels! He’s also our family clown, always entertaining us with a silly joke or dance, delighting in teasing Liz. And he recently told his mother that he wants to take gymnastics like his sister. And we say, “Why not?”

I’m not sure that David will ever become a black belt in karate or excel at gymnastics, but I do know that he will try. As he grows up, I hope he will realize that he achieved much more–he helped to ensure that hundreds of children from his generation will not be crippled by polio.

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