Monday, July 8, 2013

How HiB Hurt Stuart

In February 1980 Stuart was “very bright, garrulous and had started the process to reading at just over 2,” says Annie, his mother. At twenty-nine months, he was already toilet trained, unstoppably active, always alert. Then, he came back from daycare with a runny nose. It didn’t slow him down: he played normally, and spent a long time kicking a ball.

Then he started vomiting. Annie says: “By 7pm that night he was photophobic [light hurt his eyes], vomiting, wailing, comatose and scarlet red. He went from active but sniffly to comatose in 25 minutes.” His parents drove him directly to Casualty, the Australian equivalent to the American Emergency Room. The intern who saw him tried to send him home, saying Stuart had stomach flu. But Annie says, “I insisted. … his high-pitched, toneless wailing on top of everything else sounded alarms for me.” Annie was a nurse. She knew enough not to let her son be sent home. At the time, Annie had private insurance, so she demanded to see a pediatrician. Upon seeing the child’s condition, the pediatrician immediately took action. “They admitted him to isolation. Next step was a Lumbar puncture.”
Stuart had HiB disease, Haemophilus influenzae type b, which is not a flu, in spite of the name. The CDC’s pink book explains: “Haemophilus influenzae is a cause of bacterial infections that are often severe, particularly among infants. … Before the introduction of effective vaccines, H. influenzae type b (Hib) was the leading cause of bacterial meningitis and other invasive bacterial disease among children younger than 5 years of age; approximately one in 200 children in this age group developed invasive Hib disease. Nearly all Hib infections occurred among children younger than 5 years of age…. The most common types of invasive disease are meningitis, epiglottitis, pneumonia, arthritis, and cellulitis.” Complications include brain damage, hearing loss, and death, among others. Epiglottitis - a situation where the tissue at the base of the tongue swells and can block breathing – was commonly caused by HiB: “before the introduction of Hib vaccines, epiglottitis was due to Hib in over 95% of cases.”  Dr. Paul Offit writes: "Once infected, the epiglottis can block the windpipe - no different, in a sense, than being smothered by a pillow.” (Paul Offit, Deadly Choices, p. 60). 
Stuart remained in the Hospital for 8 weeks. He was unconscious for the first 24 hours, and then, after the doctors and nurses “pumped him full of IV Antibiotics”, regained consciousness. Annie says: “he was aware, and he was so sick and miserable.”
Annie and her husband stayed in the hospital with him. She describes the month as an “awful Indian Summer February. I say that because my husband and I were automatons operating on Autopilot. I knitted my husband a cardigan in the hospital...... it is too long, has different length sleeves and both fronts were the same. as I said, autopilot.” They could not sleep well, and were intensely worried. Annie was afraid they would lose Stuart. She says, “I know in my heart we nearly lost him. Just seeing the pediatrician’s face told me he was in deep s###. I've always wanted to find the Intern who told me to take him home and actually confront him about it.... for 33 years I've dreamed of it.”
 Stuart’s ordeal did not end when he left the hospital. He “came out of Hospital no longer toilet trained, unable to walk and talk. It took him a long time to regain any vitality and even longer to be healthy again. School was a misery for him. We went through 5 years of intensive vestibular stimulation therapy (rocker boards, spinning, to redevelop his nervous system I think it was). He suffered from difficulty in visual perception, wore Irlen lenses for years (they worked). He described to me recently what happened to words when he looked at them. It was like a spinning radiating rainbow pinwheel and the words had halos and the letters had haloes and were 3 dimensional and floated off the page. His perception was totally skewed. He has an IQ of 140 but could not read or write. He reads avidly now [at over 30], but still cannot write well. … He is not as eloquent as his intelligence indicates still.”
Annie says: “Back then... there were no vaccinations for it. I think they were just beginning to look at them here in Australia.” The vaccine started to be used in Australia in the early 1990s, and publicly funded by the governmentsince 1993. In the United States it was adopted in the late 1980s. HiB has declined dramatically since then both in Australia and in the U.S.:

Annie said she is happy that other children are not at risk of suffering the way Stuart did and paying the price he is still paying.

Acknowledgements: Thank you to Kathy McGrath, Clara Obscura and Martin Smith for their help . Above all, thanks to Annie for sharing her story so eloquently. All errors are, of course, my own. 


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