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Killer Disease on Campus

Behind the Scenes: Capturing a Killer
by Jeremy Llewellyn-Jones

 

Killer Disease homepage

My introduction to meningitis goes back almost ten years. I remember the day like it was yesterday.

It was early summer, 1993, and I was paying a visit to St. Mary's hospital in London. Warm and noisy in the streets around the hospital, it was pleasantly cool and quiet on the children's intensive-care ward. I had come to see Dr. Parviz Habibi, the doctor in charge, to talk about a documentary idea. Habibi had just established a pediatric retrieval service to rush intensive-care doctors and equipment to places within 100 miles of St. Mary's where they were urgently needed, and I wanted to make a film about it.

As I walked into the unit, I knew that most of the children they would go out to would be victims of meningococcal disease, either meningitis or septicemia. [For precise definitions, see FAQs.] St. Mary's had become a leading treatment center for children with this dread illness. I also knew that at the time, meningococcal disease killed up to 37 adults and children a month in the United Kingdom. It was—and still is—a disease that strikes fear into people, makes newspaper headlines, and beats scientists.


On call

To make the film, normal life ground to a halt. Like doctors, we were on standby to go out on retrievals 24 hours a day, seven days a week for a grueling four hot months. Cellphones and beepers were our constant companions. A social life? Well, there just wasn't one.

After a few call outs, we began to work to a pattern. As soon as we arrived at the destination hospital, I had the task of approaching parents and asking their permission to film. The meningococcal bacteria are fast: Within hours a perfectly fit and healthy child can be fighting for life, his or her body overrun by microbes that are ruthless and merciless, able to skillfully evade and even confuse the body's immune system.

I wanted to show this on film, to explain for the first time how this disease moves so quickly. The parents had to trust me immediately as they watched their child get wired up to monitors, put onto life support machines, poked with needles and fitted with tubes. Amid the confusion and a desperate struggle for life, they had one more thing to think about—filming—from beginning to end, irrespective of the medical outcome. I kept thinking, I have two children. What would I do if it was me?

No one turned me down. Everyone my crew filmed had the option to withdraw from the film at any stage, even right up until the airdate. But no one did. Throughout that summer, we filmed dozens of cases. All the while we were shocked and saddened at the speed with which meningococcal bacteria ravage the system and in some cases kill. And we were moved by the strength and courage of parents suddenly launched into their worst nightmare, and impressed by the skill and tireless effort of the doctors and nurses. I wanted to portray the roller-coaster effect this disease has on the parents of infected children, and I wanted to raise awareness of this lethal disease so that more people would recognize the symptoms.

The film, called "Cries of Alarm," first aired in October, 1993. But I wasn't satisfied. One thought kept niggling away at the back of my mind. Just what is going on inside someone who has meningococcal disease? How do the bacteria wreak such havoc? Why is there no vaccine to prevent all forms of the disease? One day, I hoped I could make a science film.


The inside story

Several years on, I returned to St. Mary's to ask about filming more meningococcal disease cases. The unit had grown. There were more intensive-care beds, more doctors and nurses. The unit also had research labs and a team of technicians devoted to vaccine research. But there, amid all the hustle and bustle, was the familiar face of Parviz Habibi, still head of the unit, still full of energy, and once again enthusiastic about my proposal.

I told Habibi that I wanted to tell the science story, to explain how the meningococcal bacteria worked once they penetrated the body's defenses. As before, I would need to film cases as they happened. To describe what goes on inside the body, I planned to cut to 3-D computer graphics that would offer a bacterium-level view of the extraordinary chain of events that so rapidly unfold (see Killer in the Bloodstream). Then I would cut back to the team of doctors working to save a child's life.

To achieve this, I knew I would have to work very closely with senior members of the St. Mary's team, to show them detailed scripts and storyboards for our graphics sequences, to check for accuracy with as many knowledgeable sources as possible. Until recently, no one had any definite idea about the behavior and life cycle of meningococcal bacteria. Slowly, with a team of designers, I built up the sequences, checking, double-checking, and redesigning. By the time we'd finished, I must have known at least as much about the subject as most family doctors.

We went back onto 24-7 standby. With a series shot in Bosnia during the war and several other emotionally draining films under my belt, I thought I would be battle-hardened, that I would find it easier. I shouldn't have been so naïve. Each call out brought the same adrenaline and dread, the same moral dilemmas and decisions. Should we even be filming at such a difficult and stressful time for parents and doctors? How can I talk to parents when they really should be left alone? How do I get the shots I need for the graphics when critically ill children are surrounded by life-support machines and medical personnel?

As we started to film the St. Mary's team at work, I noticed how their methods had changed slightly, how organized and thorough they had become, and how much intensive care for children had improved. These advancements meant that many more people were surviving the disease—Habibi had the published papers to prove it. But the meningococcal bacteria and the poisons they produce literally kill tissue, cells, and blood vessels—anything in their path. More children were surviving but at a tragic cost; they were losing whole limbs.


The optimism of children

During our filming we were privileged to meet dozens of extremely brave and resourceful children. We met Amy Mansell, just 17 years old when she was struck down by meningococcal disease. Over five weeks in a coma, Amy lost both her legs below the knee, most of one hand and fingers on the other hand. One of her kidneys was so badly damaged that she needed a transplant. (The donor: her mother.) Amy's sprightly attitude in the wake of her tragedy was truly uplifting (see Amy's Story).

We met baby Faye, just six months old when her mother noticed a dark bruise on her top lip. Within hours, little Faye was struggling to survive, another victim of the deadly disease. She survived, but she lost all her fingers and toes. Habibi told me he believes she was the sickest patient his team has ever treated, but somehow the finest medical care around and her own resiliency kept her alive.

Our filming also took us to Dallas, Texas, where we met Waneshia Taylor. One of a growing number of victims in the U.S., Waneshia lost both her legs and has countless scars on her face and body that look like burns. With help and love from her mother and the team at the Children's Medical Center of Dallas, she is fighting back, rebuilding her life, always laughing and working hard.

Despite all the progress in intensive care and the introduction of new vaccines for all but one type of meningococcal disease, the scourge still strikes fear into whole communities. It's a killer that doesn't discriminate, and across the world, hundreds of thousands die from it each year, most of them in sub-Saharan Africa.

I only hope that in my lifetime, the investment in vaccine research pays off and that eventually no more children and parents will have to suffer the pain and anguish that I have witnessed so many times.

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Ambulance

Even filming in war-torn Bosnia, Llewellyn-Jones says, failed to prepare him for the emotional turmoil of chronicling the suffering of those stricken with meningococcal sepsis.




Baby Faye's parents Baby Faye

The parents of six-month-old Faye were one of several couples who courageously allowed Llewellyn-Jones to film their highly personal tragedy as it happened.




Pediatric ICU

The pediatric intensive-care unit at St. Mary's Hospital is well equipped to deal with the scourge of meningococcal sepsis—if patients arrive early enough in their illness.




Rapid response team

On standby around the clock, the St. Mary's rapid response team heads out to aid another patient struck down with meningococcal disease.




Waneshia

Waneshia Taylor was one of many children whose strength and spirit astounded Llewellyn-Jones during the making of his two films on meningococcal disease.




Other Producer's Stories

On Call Going on Call
A NOVA producer's remarkable journey into head trauma.

The Producer's Story
What it was like to follow seven doctors-in-training for 14 years.




Companion Web Site Content
Amy's Story

Amy's Story
Meet a 17-year-old survivor of meningococcal disease.

Behind the Scenes

Behind
the Scenes

What it was like to film life-or-death situations.

Amy's Story

Killer in the
Bloodstream

Animations of meningococcal bacteria at work.

Making Vaccines

Making Vaccines
Create six vaccines in our virtual laboratory.


Jeremy Llewellyn-Jones A producer at Windfall Films in London, Jeremy Llewellyn-Jones's television documentaries include "Siege Doctors," a series of one-hour films about British doctors working in war-torn Sarajevo, and "Caraline's Story," a film about the life of a 28-year-old anorexic/bulimic woman. He is also a professional landscape and documentary photographer.


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