When the Good Die Young: How Chicken Pox Took Jesse

Jesse's picture, and his family's picture are provided courtesy of his mother, Renay, and posted with her permission.

Jesse Lee was born on November 12, 1991. He was a happy, funny child, who enjoyed making others laugh, and would say and do funny things for that purpose.  He had a sense of humor that was sometimes on the cheeky side, said friends of his mom, Renay – like his mom. He was “a very caring, loving, kind kid who wouldn’t hurt anyone or anything”.  His family was close, loving, warm. He had many friends.  

Jesse had just graduated from third grade and was starting his fourth. He was healthy, active, charming. He had everything waiting for him. Nothing prepared Renay for what was about to happen, and the speed with which it happened left family and friends reeling.

Jesse came home from school on Monday, August 27, 2001 with a bad headache. Almost as bad as a migraine, Renay remembers. He had no fever, but he felt horrible. He started vomiting heavily that night and continued through the next day, Tuesday. He rested as best his could, with his mom watching his fluid intake and keeping him as comfortable as possible. Worried, Renay slept in his room for the next few days, watching over him. On Wednesday, when things were no better, Jesse’s parents took him to the doctor. The doctor prescribed antibiotics.

Later that day, however, they noticed Jesse had spots over his chest and belly, signs of chicken pox. And still, no fever. At this point, Jesse managed to eat a bit. Worried, Renay kept a constant eye on him, and made sure he was drinking enough.

Jesse was no better on Thursday, except that he was now dry retching, instead of actually vomiting. He had no fever, but he was in bad shape. His parents took him to the doctor again, and this time he was sent immediately to the local hospital, the first of three hospitals he went through. Renay describes the situation in that hospital as “hectic”; the nurses were extremely busy, and Jesse was getting very little attention.

In the night between Thursday and Friday, breathing became harder for Jesse. He was struggling for air. The hospital gave him oxygen, and X-rayed his chest. That ‘s when they discovered he had a bad case of pneumonia. He was covered in chicken pox lesions at this point; Renay says, “they went internally and caused pneumonia”. The local hospital concluded that he needed treatment beyond what they could give him, and at 7:30 pm sent him to another hospital. Renay dropped Kimberley at her grandparents house and rushed over, getting there around 10:30 PM. Renay is not sure why – understandably, that was not her focus at that point – but that hospital, too, concluded that they could not treat Jesse and arranged for him to be sent to an even more specialized hospital in Newcastle. That made three hospitals in less than 48 hours.

A specialist respiratory team came from the Newcastle hospital, and put Jesse – now receiving oxygen constantly - into an induced coma for the trip back to Newcastle. Before they put him into the coma, his parents got a last chance to talk to him while he was still conscious. They said their goodbyes, not knowing whether or not he would ever wake up, not knowing whether they will ever talk to him again. Jesse asked his dad whether he was going to die. Paul, Jesse’s dad, said: “no, mate, we will see you when you wake up.”

In the hospital in Newcastle the Doctors fought for Jesse’s life. Still in a coma, he was put on several kinds of drugs, and hooked to numerous tubes. But by this time, says Renay, it was already too late.

By Saturday, Jesse was in critical condition. Renay says, “they were telling me he was very sick, and they were just doing their best to help him fight it.”

While Jesse was fighting for his life, his sister Kimberley, who was brought to Newcastle to say her own goodbyes, was taken downstairs and given a shot to protect her against chicken pox – not the full vaccine, says Renay, which she did not get until December, but something to protect her. Luckily, she did not catch chicken pox.

All through Saturday it was touch and go. Jesse was hooked to multiple tubes, receiving multiple medicines. His condition seemed to improve slightly, giving his parents hope. It was short lived, says Renay: “then he deteriorated and in the end his heart could not take it any more and failed. His organs just started to shut down. He had chicken pox everywhere, on his arms and legs, he had them everywhere. He was covered in them.”

Jesse may have looked something like this, or worse:

Numbers based on Australian data; picture Courtesy of refutations to Anti Vaccine Memes, https://www.facebook.com/photo.php?fbid=518429594893721&set=pb.414643305272351.-2207520000.1371660433.&type=3&theater

Jesse left the world just before midnight on Saturday, September 1, 2001. He was not yet ten years old. Before that he was read the last rites twice. The Chaplain sang hymn to him. Renay said: “The Chaplain was wonderful”. Renay asked him to officiate in the funeral, which he did.

The family was in shock. The impact on the community was also staggering. Chicken pox. A common childhood disease. Who would believe? Who could believe? And Jesse was gone, leaving a hole in the hearts of his parents and his little sister and the many other people who knew and loved him, who were now, says Renay, “shattered”.

“I didn’t know there was a vaccine,” says Renay. The vaccine came out in Australia six months before that, she learned later.  “Jesse and my daughter Kimberley  have been vaccinated against everything. And I did not know this vaccine was available. If I had known, he would still be here.”

It is twelve years now since Jesse’s death. Renay and Paul are brave people; they are living on, working, functioning, taking care of Kimberley, Jesse’s young sister, and Renay is fighting to protect other children by raising awareness of the dangers of vaccine preventable diseases. But it still hurts, every day. Renay says: “I miss him so much. It’s true what they say, that the good die young.  People have no idea what we go through every day".

Renay and I are writing this for two reasons. First, to tell Jesse’s story. Jesse deserves to have his story told. We want to remind those who knew him of the wonderful boy lost; and to tell those who did not of who he was and what happened to him. Second, to warn other parents. Chicken pox is often a mild disease. But you can’t count on it. Complications can happen. Yes, it can even kill. Being healthy is no guarantee. There is no way to predict how it will affect the individual child. And it is preventable. We have a safe vaccine with demonstrated long term effectiveness. Protect your children. 

Acknowledgements: I am grateful to Renay Newman for sharing her story with me, introducing me to Jesse, and reading drafts and correcting details; Thank you to Alice Warning Wasney and Clara Obscura for their advice, corrections and support. All errors are, of course, my own. 

Meningococcal: Stalker of our young.

Chuck was an “Artful Dodger of a cad”, says Maggie. At 14, the 9^th grader was vibrant, full of energy, engaging and funny. “He was a redhead, freckly, cute as a button boy. He really did light up the room.”  He had “a little dyslexia” but nothing too serious. Maggie was an experienced teacher, and in her judgment Chuck was going to be “absolutely fine”. 

He wrote her a letter one day. He told her that although she was hardcore, and gave them no breaks, he appreciated the fact that she shouted "Safe and sane!" every Friday.

Because of his parents’ divorce and his anger at them, Chuck ran away from home. No one knew where he was staying: each parent thought he was staying with the other, while he was actually staying with a friend. Maggie knew something was wrong, but did not know exactly what.

Maggie does not remember if it was Monday or Tuesday. Chuck had “a horrid headache” in class in the morning. He kept putting his head down. Maggie kept rebuking him. She told him to go to the nurse if he was sick. If he was not sick enough to go to the nurse, he should sit up in her class. A girl sitting behind Chuck massaged his neck and shoulders, and told him to “come on.” Maggie told her to “keep your hands off him, we don’t want to reward him for being lazy”.

Later that afternoon Chuck was caught shoplifting. His headache got so bad he really needed aspirin. Since he was a runaway, he had none. So he stole some from a store, and got caught. He was in such bad shape at that point he was taken immediately to the Community Hospital. They could not save him. He was dead by 7 pm that night.

When Maggie arrived at school the next day, she saw a school counselor that worked with Chuck. The counselor said: “Maggie, I need to talk to you about Chuck.” “Yes,” agreed Maggie. “We need to get him pinned down.” “No, it’s not that,” said the counselor. “He’s dead.”

Maggie described this as devastating. Devastating to her, devastating to the community, and above all to Chuck’s parents. Maggie says, “His parents were absolutely heartbroken. They were so immersed in their own little drama that they felt guilty that they have not checked with other. And he was an only child.”

In addition to the psychological consequences, she remembers that everyone who came in touch with Chuck – 1400 children, all the adults that had contact with him, and their family – had to take Rifampin for a month. Maggie had two little girls, also at risk, also now on the medicine, as was her partner. She was frightened.

Two weeks after Chuck’s death a girl burst into tears in class. She was crying orange tears, from the medicine.

Meningococcal disease struck Maggie’s students twice more, in 1998 and 2000. This time the victims were undergraduate students in classes Maggie was teaching as an Adjunct Professor. Again, the students had a bad headache, and were dead shortly after. Maggie says: “What’s amazing is how fast they go from I don’t feel so well, or I got a really bad headache, to dead in about six hours.” There was a vaccine available at the time; but it was only recommended for high-risk groups. The vaccine was recommended only after the new, conjugate vaccine was licensed in 2005.[1]

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Meningococcal goes for our young. Children under 5 are most at risk, followed by adolescents . People who live in close quarters  - like college students in dorms – are also at risk.[2] It kills 9-40% of the people who catch it, depending on the form it takes.

Young Landan Harris was one of the victims of the disease. A happy, beautiful toddler, he was 3 when he died.

Picture taken from: http://www.meningitis-angels.org/LandanHarris.html, with permission from Lacey, Landan's mother. 

He was crabby in the evening. His mother described what happened next (the text is taken verbatim from the site his mother, Lacey created to honor her son’s memory):

“At 9am I woke up to find Landan laying on the floor next to my bed covered in, what looked to me, like bruises. I thought he was dead, I was so afraid to touch him. I called my mom & then called 911. We took him to the best children's hospital in the area ....

His left foot was completely purple, so were his entire back & nose. His other extremities were very splotchy purple. ... If Landan would have made it he would have had several amputations. But selfishly we would have taken him any way we could have him as long as he was still here with us.

Landan fought for 23hrs [sic] at the hospital enduring 3 hyperbaric treatments. The treatments were helping bring back color to the purple areas. They said it was a miracle he lasted as long as he did, that's why are [sic] hopes were high.

His little heart finally couldn't take it anymore & stopped, we watched them doing chest compressions & then the doctor stopped & my mom asked him if Landan was gone & he said yes, there was no more brain function. I still was unable to cry at this point, I couldn't believe what I'd seen with my own eyes & that he was gone.”

Landan’s mother Lacey created a YouTube dedicated to his memory.

She is now working to raise awareness of this disease, and especially of the availability of a vaccine for it. Other parents, suffering similarly, created the National Meningitis Association, to raise awareness of the disease and the existence of the vaccine, and offer support to victims and their families: .

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About 20% of those who survive the disease will have lasting damage, including  “hearing loss, neurologic damage, or loss of a limb.” 

Here is one such little girl:

Courtesy of: https://www.facebook.com/pages/The-Vaccine-Meme-Machine/302477036534120, who got it through Charlotte's website, http://www.charlottecleverleybisman.com/.

Other pictures of the disease can be seen here - scroll down for pictures of children suffering from it. Warning: these are hard pictures.

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One of the problems highlighted by the National Meningitis Association is the lack of awareness of the vaccine.  In the United States, the vaccine is recommended for teenagers but parents may not be aware of it. Losing a teenager or young adult is always painful; losing them when there was a vaccine available, and it could have been prevented, but you did not know, is excruciating.

Somestates now require the vaccine before a student can enroll in a public university, and others require that students and parents be given information about the disease and the vaccine. Hopefully, this can help raise awareness among parents, teenagers and young adults, and help protect them.

The vaccine is also recommended for high-risk toddlers and infants but notroutinely for toddlers or babies.  In contrast, in Australia thevaccine is recommended at the age of 12 months. The currently used meningococcal vaccine covers only certain types of the bacteria, and it does not cover strain B, the one responsible for more than 50% of the cases inchildren under one. So there is no recommendation of the vaccine for routine use in young children. A vaccine that covers strain B was approved in Europe but as far as I know is not currently in use. Several vaccines that cover it are currently at different stages of testing in the United States. 

Lacey, Landan’s mother, strongly urges parents to get the vaccine for their young children as well, if they have access to the vaccine and can afford it, imperfect as its coverage is. She wants to protect other children from what happened to Landan.

She convinced me.

Acknowledgements: Thank you to the National Meningitis Association, Alice Warning Wasney, Clara Obscura, and Paul Offit for advice and help on this post. Thank you to Maggie and Lacey for sharing their story. 

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[1] Paul A. Offit and Charlotte A. Moser, Vaccines and Your Child,  196 (2011).

[2] Id.

Polio through the Eyes of a Child

Judith remembers the day when it all started very, very clearly. “I was 6, almost 7.  It was in late August 1949 in Connecticut. I jumped out of bed to run to the bathroom and fell and then couldn’t get up.” Judith was very, very frightened. By the next day, she was paralyzed from the neck down. The doctor was urgently called, although it was late at night, and at his instruction, Judith was immediately transported to the hospital. Judith thinks that she was taken in her parents’ car, but she is not sure: by that point, she was running a high fever, and was only partly aware of her surroundings. The hospital was an hour’s drive away. Upon arrival, Judith’s parents told her, she was put in an iron lung. Her parents were told she was not going to survive. Judith was not aware; she says: “I think I was unconscious. My first memory is waking up and seeing the iron lung next to the bed... I had been removed from it”.

                         Iron lung picture courtesy of "The Vaccine Meme Machine" -             https://www.facebook.com/pages/The-Vaccine-Meme-Machine/302477036534120?fref=ts

There were 200 children in the hospital, some very young, infants or toddlers in diapers. There was a shortage of nurses because many nurses, after serving in World War II, quit their hard, challenging jobs and went home to marry and raise a family. For the first month, Judith was in quarantine. Here is how she describes that experience:

“Twice a day, an orderly comes in with a stack of towels, fills the washer tub with steaming hot water that snakes through a black tube from the faucet, and drops them in. The towels are actually cut-up recycled army blankets. With gloved hands he feeds the dripping wet wool towels into the wringer and then passes them to a nurse, who wraps them around the girl’s arms and legs. The therapy is working; each day she is stronger. She is coming back to life.

This morning, her blanket and top sheet are drenched, but not from the hot packs. A while ago the nurse brought in a breakfast tray with Rice Krispies and a glass of orange juice, then poured milk into the cereal bowl, filling it almost to the top. “There you go, honey,” she crooned. Later, when the girl spooned the cereal into her mouth, the milk slopped over and ran off the tray. When the nurse came to retrieve the tray, she saw the mess. Angry, forgetting herself, she said, “Clumsy girl. You’re going to have to wait until I’m done with my rounds.”

The girl can shut out this world by remembering the earlier days of summer when she played on the beach everyday and learned to swim. She relives the first moment of trusting the water and lifting her feet from the soft sandy bottom, kicking a splashy wake behind her.

.. the nurse returns and wordlessly pulls off the wet sheet and blanket and flings crispy dry ones over the girl, tucking them in quickly. A warm tingly flood of relief flows through the girl. She is respectfully quiet and watches the nurse, who looks a bit like her mother, except she’s older and her mouth is turned down. She has black shiny hair pulled up and tucked under a white cap with “Englewood Hospital” embroidered on it. Her uniform has dark stains down the front and she wears a wedding ring.

“Your mother and father are coming to visit today,” the nurse says, going over to check the window and then looking out at something below. “You’re a lucky little girl,” she says, turning back to face her, “but better mind your Ps and Qs.” The girl thinks these are actually conditions the nurse has placed on the visit and she thinks about how she may have misbehaved. A child in the room next door starts to cry.

She was brought here in the middle of the night about a month ago, and no one has told her what that means and she does not know what questions to ask, nor does she dare because maybe she is not supposed to know why.

An orderly comes to the doorway and drapes what looks like chicken wire across the entrance to waist level, hooking it onto nails driven into the sides. “Getting ready for your visitors,” he says, leaning in a bit. The child next door stops crying. The girl’s eyes close and she falls asleep, dreaming about her little sister.

She is awakened by the sounds of her visitors. “Hello, sweetie,” her mother calls from the doorway, waving. She has on red lipstick and wears a yellow ruffled summer dress. She lightly pushes at the wire mesh and ruefully blows a kiss toward her daughter. The girl’s father stands stoically next to her mother, smiling and brave, like the soldier he still is. The girl is half sitting up and straining to see the details of them, but they are so far away. She wishes they could all leave together and drive to the beach in their yellow Plymouth convertible and swim under the hot sun.

“A present for you,” her father says, and he aims and tosses a bright green rubber frog in a gentle arc toward the bed. It bounces off and onto the floor, skittering away. “Oh, dear,” her mother cries, “now it’s no good.” The girl knows this is true; anything that touches the floor is taken away because now it has germs on it. She fears for the fate of her lifelong panda bear with the black button eyes. “We’ll get you another one next time,” her father announces, fixing the problem.”

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 After the first month, Judith was taken out of quarantine and moved to a ward with other recovering children. She spent four more months there, for a total of five months in the hospital, away from her family. Understaffing made things harder. Judith says: ‘I remember things being so bad that we had to share a bedpan, over and over, passing it around.  

While I was in the hospital, my family was ostracized. People stayed away from them because they thought they were contagious.”

After returning home, Judith had a severe fear of being abandoned, and was afraid to let her mother out of her sight. Once her mother left Judith in the car to go into a store. The distraught little girl became hysterical and started screaming, causing a crowd to gather around the car.

Judith concludes: “I was lucky. Only one leg was left paralyzed. I went through physical rehabilitation and had surgeries. I developed severe scoliosis and had to wear a back brace along with the leg brace. I was anxious and depressed, although in those days people didn’t talk about their feelings, and so I didn’t either.” Judith was also surprised to discover that her sister believed she had lost all feelings in her leg. That was not true; she had “total feelings” in the leg.

Judith recovered. But she concludes: “I never really had a childhood. I never played sports, danced, ran or hiked in the woods.

If there’d been a vaccine, obviously I would have been vaccinated.”

She does not understand why anyone would refuse to vaccinate. From her point of view, they are lucky to be ignorant about the potential consequences of such a decision.