A Fighter, not a Victim

To avoid the hot
1942 summer, Sandy’s family left their New York home and traveled to Moodus, Connecticut. Sandy’s stay lasted longer than
he planned. While in Connecticut, he was afflicted with polio. It started with
a headache and fever; shortly afterwards he was hospitalized. The health
officials would not let him travel back home, so his mom chose, for his stay,
the Connecticut hospital closest to New York. His parents visited, though they
were not allowed to have physical contact with him – they had to stay behind a
screen (as in the story told by Judith). Sandy stayed there for at least the full balance of the
summer and possibly longer, leaving the hospital on Labor Day. Labor Day became
a special occasion for the family, one celebrated again and again. 
Sandy remembered
clearly the hospital member – nurse or assistant, he never told his children –
who told him he would never walk again: “he told me I would never walk again; I
told him to get out of my room and never come back”.  Sandy lost his faith in health care
professionals after that.
Sandy proved that
man wrong. He left the hospital with his left calf muscle atrophied, but he not
only walked for most of his life, he played tennis three times a week.
“Stubborn,” says his son, Les. “he didn’t even let that slow him down. He
acknowledged the disease but he didn’t acknowledge any disability or handicap
from it until very, very late in life.”
Sandy attributes
his recovery in part to two things: the Sister Kenny Method under which the
muscles were moved around to prevent them from atrophying, and the fact that
his adored mother used to take him to the beach to walk on the sand barefoot,
which also, he thinks, strengthened his muscles. His family attributes it in
large measure to his strength of will.
Still, the shadow
of polio was with him, and not just in the atrophied calf (which did not slow
him down). He would never acknowledge a headache and always denied having them;
Les believes this was due to a headache being what started Sandy’s disease:
Sandy was unwilling to acknowledge the possibility of polio coming back. He did
not like things touching his feet, probably because of the memory of the
hospital bed, so his parents “built a little frame over the bed so that the
sheets could hang over the frame instead of touching his feet”.
Another memory
brought home to Les how deeply the polio affected his father: “When we went to
an Indian Guide Camp to Catalina one year – coincidentally the same camp I took
my own children to – I came down with a fever. 
And I did not know at the time, I had no idea until much later in life,
that that was a signal of the onset of polio, a high fever, but I did not know
that. I had a propensity for headaches and fever when I was a kid, but it was
always my mother who took care of me, but this was a father/son campout and I
remember they called the camp doctor and I was laying there in the little cabin
and the doctor came in and they stepped outside, they thought out of earshot,
but I remember my dad asking the doctor in a concerned voice, ‘it’s not polio’
– something to that effect and I realized he was so concerned about that.”
In spite of his
mistrust of healthcare professionals, and in spite of the recent Cutter Incident (see also here), in which several children died from an improperly
inactivated polio vaccine, Sandy made sure his children were vaccinated against
polio. The Cutter Incident made everyone at the time aware there was a risk;
but Sandy was also aware of the horrible risks on the other side.
Sandy built a
successful career practicing law, and Les and his brother worked with him and
learned from him.
And then Post-PolioSyndrome caught up with Sandy. As the new millennium started, he  was starting to weaken. He no longer played
tennis, and the cartilage in his good knee was gone. It’s not clear if this was
part of Post-Polio Syndrome (PPS) or just aging. Sandy started using a cane,
then a walker, and finally a wheel chair. His cane was the first aid he used,
and he got it from a 99 Cent store which sold it as a walking cane. Then one
day it broke, and he hit his back against a wall as he twisted to avoid
falling. Sandy believed it was the fall that triggered the PPS. He filed a
lawsuit against the 99 cents store and the makers of the cane, and his sons
helped him prepare it. Through his determination he ended with a $40,000
settlement.
By 2005, Sandy was
in a wheelchair. He hated it. For years he fought succumbing to polio, now he
could no longer do it. But he was a realist, so he bought a wheelchair before
July 4, 2005 and bought a van and remained mobile, alert and active. It was at
that time he met the only doctor he came to trust, Dr. Jacquelin Perry, who
worked on polio and post polio syndrome and recently died herself, in her 90s. Dr. Perry taught
both Les and Sandy a lot about post polio syndrome. Les describes her as a
“remarkable woman, who really was the one who identified post-polio as a late
onset symptom of polio survivors.” She is described as “the Grande Dame
of Orthopaedics” and admired forher revolutionary work in helping polio survivors and in relation to post-polio
syndrome. Sandy learned to
trust her judgment and respect her.
Even with post-polio
syndrome, Sandy demonstrated the stubbornness that helped him walk again after
his experience with polio. Les tells about how Sandy managed to be mobile for
his granddaughter’s graduation: “When Leah graduated it was a hot day and he
had to cross a long field and that guy like the energizer bunny just kept going
and going and he made it to the graduation, and she graduated in 2006. That was
just after, within a year of him getting that wheelchair he had to make it
across that lawn. And he did.”
Eventually
diagnosed with terminal cancer, Sandy was sent home in a hospice care. Les
tells how Sandy refused to be assisted onto the gurney that would take him
there: “two ambulance attendants came in with a gurney, and they were going to
roll him onto the gurney and roll him out, he refused. He said, I’m going to
stand up, and … that guy stood up barefoot on the hospital floor and then sat
on the gurney and said “now take me”.”
To the end,
he refused to be a victim.
Sandy died
in October 2011. Les and his family feel his absence, but also feel honored to
have known this strong, stubborn man who would not give in to the horrible
disease – but was very, very anxious to protect his children from it.
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The Price of Polio: A life in a Hospital

This post summarizes the story published by the BBC at: http://www.bbc.co.uk/news/magazine-23364127
Paulo
Henrique Machado was born in Brazil 45 years ago, in the middle of a big polio
outbreak. His mother died when he was only two days old. Paulo was hospitalized
as a baby, as part of a group of 11 children suffering from polio.
Paulo describes growing
up in the ward, moving around with a wheelchair and exploring his world – the
hospital. His social circle were his ward fellows.
The
doctors’ predictions for their future were grim: average life expectancy of
children in the ward was estimated at 10 years.
The BBC story quotes Machado’s nursing assistant, Ligia Marcia Fizeto, as saying:   
“It was very sad to see
all those children, all lying there immobilised in their beds, or with very
little movement.”  The children
were all in iron lungs. Paulo still uses an artificial respirator constantly.
Six of these children beat the
ten-year expectation. Paulo says: “There was me, Eliana, Pedrinho,
Anderson, Claudia, Luciana and Tania. They were here for a good length of time
too, more than 10 years.”
But in the 1990s his friends deteriorated and died, one by one. Paulo says: “It was
difficult … Each loss was like a dismembering, you
know, physical… like a mutilation,” he says. “Now, there’s just two
of us left – me and Eliana.”
Eliana is Eliana Zagui.
Together, Eliana and Paulo offer each other companionship and support. They
share a ward they personalized to their taste, with Eliana filling her side
with dolls and books and Paulo filling his side with film memorabilia and two
computers.
They argue constantly, and
Paulo describes the relationship as sibling-like. Most of their time is spent
in the hospital, though they have had trips outside, more recently, as
technological advances make the equipment necessary for a trip less heavy, and
allows for looser supervision.
When Paulo was 32, he and
Eliana went to the beach together for the first time. They both describe the
intense excitement and wonder of that visit, the first time they saw the sea.
They got to feel the sand, to touch the water. Eliana says: “You enjoy
these little moments, that many people take for granted. They don’t stop to
marvel like we do,”
Eliana is a published author,
overcoming her disability by writing and painting with her mouth. Paulo has
trained as a computer animator in the hospital.
Seeking to put their talents
together, Paulo orchestrated an online campaign to finance a 3D animated series
based on a book Eliana wrote. The series 
will be called “The Adventures of Leca and her Friends” and will be
based on Eliana’s real life. Says the BBC story:
“[Paulo] Machado
wanted to portray his life with Zagui – also known as Leca – and their friends.
“I wanted to make it attractive, not just colourful but full of the
mischievous games that kids get up to. I think my characters are realistic,
because they come from someone who is disabled. I know [exactly] what the
difficulties they face are,” he says.” 
Paulo
and Eliana’s achievements are inspiring and amazing, especially in the face of
the real limitations they overcame. But I cannot help feeling relieved that
most of the world’s children are protected against the price polio extracted
from these two extraordinary people and their friends. With luck, we can finish
the polio eradication project, vaccinating children to prevent this horrible disease, and other children will not have to suffer
similarly.   
Acknowledgements: I am grateful to Bradey Paschal and Xandy Gilmore for alerting me to this story, and to Xandy Gilmore and Alice Warning Wasney for comments on the draft. All errors are, of course, my own. 
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Measles’ Cost for Carol

 Carol and her eldest
daughter, provided by Carol with permission to use.  
Carol was born in 1961, before there was a vaccine available
against measles. She contracted measles the first time at the age of two, but
that was probably a mild illness, she says, because she has no memory of it and there are no family stories.  She was three and a half when she contracted
measles again, and this time it was serious. She was covered in a rash from top
to bottom, she hurt, she itched; and she vomited constantly. She thinks the
vomiting was why she had to be hospitalized. In spite of her young age, her
memories of the hospitalization are very clear: “I still remember the smell of
ether that was the typical hospital smell”, and since then, “any time a male
nurse or a male doctor came near me as a child I used to scream because they
were going to do something that hurt me.”
She tells of her experiences:
“I was not in a big bed, I was in a cot, I felt imprisoned.
I was isolated somewhat, I was kept in the corner of the ward; there must have
been about ten cots in this particular children’s ward, and there were three
empty cots between me and the next one that had a child in it. In order to have
a bath they actually had to carry me out because I couldn’t walk, I was in so
much pain and covered head to toe in this measles rash.  It’s probably my earliest memory, being
carried to the bath in the hospital and crying because I hurt so much, I was
itchy, and my eyes were sore.
“I vomited constantly for these three weeks. I was vomiting
so much – it was very, very brutal. I couldn’t even keep water down. [When she
arrived at the hospital] they tried to put an IV into me. It didn’t happen. And
so they managed to get me to suck ice chips. I think I managed to keep whatever
water I could get from the ice chips down. So they just kept an eye on me,” and
did not try again to insert the IV. “I still remember the smell of lunch time
and dinnertime coming, and it made me feel sick. Mom used to come up at
mealtimes to try to get me to eat something. I don’t know how many times mom
went home wearing my vomit.”
Traumatic as it was, it was not the vomiting that affected
the rest of Carol’s life: it was the sore eyes. 
Upon leaving the hospital, Carol’s eyesight was very bad, especially in
her left eye. She does not remember much, but she does remember double vision.
She also remembers one occasion when a teacher, at the young age of four and a
half, attacked her: “I was sitting in a desk in the front row, and we had to
copy this sentence that said ‘We went to…’ I can’t remember where we went to,
and I couldn’t see past the ‘We’ and then the ‘w’ ‘e’ from ‘Went’ – and I got
that written down and then everybody else had finished. And I was looking at the
blackboard and seeing this ‘we we’ and that’s what I’ve written, and the
teacher, she belittled me in front of the whole class. ‘We we, this is all you
can think of. Well, when are you going to the toilet?’ It was really quite
frightening. And I remember it quite clearly, I was four and a half, nearly
five.” Two weeks after that Carol had eye surgery: she was finally diagnosed
with a “visual impairment that required surgery”, an impairment directly resulting from the measles.  It was performed by a visiting specialist,
because they lived far from the city and the hospital was a small country
hospital about three hours from Sydney.  After the surgery her vision improved
somewhat, though she was still legally blind in her left eye.
“I had to wear a black patch over my eye for years and
glasses, we’d get those horrible cats-eye glasses for kids and they came in
pink or blue… childhood wasn’t real easy, shall we say. And nobody understood,
and nobody wanted to understand.”
She was never good in sports, because of that disability. She felt keenly for
other children harmed by diseases: “I went to school with a boy who contracted
polio pretty much through the birthing process, his mom had contracted polio a
week before he was born, he was virtually born with polio, and this was truly
the tail end of the polio epidemics that we had. He wore calipers, I lost contact
with him when I left primary school, I was 11, and he was two years younger. I
don’t know what happened to him.  I still
see this kid sitting on the sideline on sports days, not being able to do
anything because he had these iron calipers on his legs and those special
boots. These are vivid memories, probably because I had such a horrid time with
my vision.”
In her 30s, a specialist told her she should have gone to a
special school for the visually impaired, but she says – “the closest visually
impaired school was a long way, so to catch public transport, which wasn’t very
accessible, I would have had to have left home at 6 o’clock in the morning to
get to school, and catch three buses.”
Her vision problems caused her difficulty through adulthood,
although she learned to cope with most things. 
She describes a car accident: “I can drive a car, but I can’t drive a
car on mainland Europe or in the United States because I can’t really see the
traffic coming whereas it’s fine over here (Australia) because the traffic
comes out from the right. I did try driving once when I visited Holland and I
ended up losing the hubcaps from the passenger side wheels in the gutter.  I stopped to retrieve the destroyed hubcaps
and refused to drive after this experience. I was so frightened…”
Carol always has bad sensitivity in her left eye, her “bad
eye”, and has to almost close it in direct sunlight, unless she has very dark
glasses on. In the picture above you may note that Carol’s left eye is almost
closed.
Having suffered all her life from the after effects of
measles, she cannot understand why anyone would choose not to protect their
children against it. “Thank God I didn’t end up with SSPE (see also here, here and here).
I carry with me for the rest of my life what measles did. The side effects of
it. These diseases, there is no excuse for them to be around. Absolutely none.
There is no cure for these diseases per se. And they are preventable.”
Acknowledgments: I’m grateful to Carol for sharing her story and correcting my typos, and to Alice Warning Wasney for comments on the draft. 
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In Memory of Mary

This blog post was written by a gentleman who asked to remain anonymous, in memory of the distant cousin he knew only as a child. He is telling what happened as best as he can remember it, this far back.

Picture courtesy of the Public Health Library, available at: http://phil.cdc.gov/phil/details.asp

This isn’t a neat story, a precise one, nor is it, by its very nature, an accurate one. What I have to give are the memories of a 6 year old, as filtered through the mind of that boy at age 60+. There are no photographs, no stories, no newspaper articles. Just a rather smudged entry in a family bible reading January something, 1948, and a little clearer further down the page, August 11th, 1959.

But I remember Mary.

I was born in 1952, so I would have been perhaps 6 when I saw her the first time. I hadn’t heard of her before. Her family was related to mine, but distantly, and but for chance and the fact that we all lived in the same general area I’d never have met her. I knew nothing other than what mother told us the day before we drove down to visit the third time: You must be nice, you must be quiet. She’s very sick, she has polio.

Polio.

You don’t know what that word meant in the year 1958. It wasn’t a disease. It was the man walking past you with crutches, one leg shortened, that you couldn’t stare at because he had polio. It was the clerk with a withered arm that you mustn’t stare at, she had polio. The man down the street who couldn’t walk well, polio. I spoke with him a few times before I was told not to bother him (Now, of course, I know it’s because he wanted me to go to the store to buy him cigarettes. Don’t laugh. 1958? Cigarettes were a health food back then).

It was socially unacceptable and awkward to see polio. They hid from it in fear. I think people were afraid of the disease, and stigmatized those who had it.

She had polio, so they took her to the sanitarium.
Mom, is the sanitarium part of hell?
No, it’s where they treat people with polio.
Why do we have to go?
We need to visit her, she’s very lonely. And I want to talk to Jim and Margaret.

So we went, a very puzzled boy in the back seat. And we went into the hospital and down a corridor that smelled of disinfectant and bleach and into this room. There was an iron lung in this room; I think several, though only one really sticks out in my mind.

To a six year old, the machine was massive, huge. It towered over me and seemed to go on forever. It was a faded yellow and it made noises, a quiet hissing sound like a giant snake. And in it was Mary.

I remember her hair, it was cut short, almost like a boys. Her face was pale and gaunt, tired. I had to stand up on a stool to talk to her. (“Will the boy be ok?” “Oh yes, he’s been vaccinated.”) I remember her eyes, they were dull and sad. We spoke a bit, and she asked me about the weather. I told her what it was like outside and she brightened up a bit and smiled. She had, I think, a beautiful smile, but like so much here I don’t remember it that well.

I do remember the dreams I had that week, though. I dreamed of being chased by a yellow, hissing thing through dark woods, of not being able to move because my legs were frozen or missing. And the snake would get me and take me to the sanitarium.

We went over to Mary’s parents house after we were finished in the hospital. I remember that, her mother made fudge (I sometimes wonder if Mary had ever gotten any. I hope so, it was good fudge.).
And we talked, or rather my parents and Mary’s parents talked, and we visited with Mary’s siblings. Then we went home.

We went on at least two, possibly three more visits to Mary. Each time the stage was the same, I remember the big room with curtains and women in starched white presiding over the iron lungs (Ah, I DO remember. There were several in the room, perhaps four.). And Mary would be in her coffin and I would get up on my stool to talk to her. I never saw her outside of her iron lung. To this day I don’t know if she was in it for the entire day or if she was allowed out. I just don’t know…

I don’t remember much of what we talked about. I was, after all, six or seven, and Mary wasn’t that much older. I know we spoke of the weather and that I spoke of what her family was doing and what her cat was up to. It made her smile, and she seemed to enjoy my company, but I don’t remember much of it at all.

I have very clear memories of the last few words we spoke to each other. I got up and we spoke a couple of minutes, and then I asked her what she wanted. Her face clouded up and she said “Oh, nothing,” and tried to smile. I said “Ok,” and since it was her mother’s turn to talk, got down from my stool. But I heard what she said next. Oh yes, I heard it. I’ve never before told another living soul what she said.
She whispered, “I just want to die.” (I’m sure she didn’t want me to hear her.)

And, well, she did die. I am not sure when, but it was two months or more after our final visit. I remember the funeral; we went. I thought it was nice, she never had much at the sanitarium and at least there she had flowers and people talking about how brave she was and how sad it was.

There are so many things here I don’t know. I can’t even tell you honestly what she looked like, healthy or ill. There are no photographs of her that I can find. I can’t tell you where she lived before polio, or where her hospital was, or much else, really. Her life is a lost and vanished chapter, and I think that I may be the only one who remembers. But I do.

I remember Mary.

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They Know They Were Lucky: Guy and Rotavirus

[This story is from Israel] 
Guy was 9 months in December 2006, a sweet tempered,
mellow baby. A crawler. He was not very vocal – unlike his younger cousin, he
did not babble a lot – but he smiled frequently and was a very affectionate
baby. His mom, Lilly [name altered to protect anonymity], has just
recently returned to her work as a dentist.
It was Thursday, and his grandmother Sara picked him up.
Normally, she said, he would crawl straight over to her, but not that day: he
was somewhat weak, and she thought at first he had a fever – but he did not. He
refused his usual yogurt, refused to lie in bed for his usual short nap, and
just curled up in her arms, limp and unhappy, clearly unwell.
That evening, his parents took him to the doctor for the
first time. Lilly says: “I was a little concerned because he was a little
apathetic from the start of the diarrhea, even though we gave him as much
fluids as possible, to prevent dehydration.” The doctor diagnosed rotavirus.
“It has a unique smell,” explains Sara. “It’s impossible to miss”.  They took him home, and he seemed to be
improving.
The next day, Sara went to visit her daughter, Lilly. She
describes what she saw: “Lilly was sitting in her dining area on a plastic
chair, a bucket next to her, baby in her arms, and he was throwing up into the
bucket again and again, poor little guy, he was so miserable. He did not even
have the energy to cry.” They took him to the doctor again. Because it was
almost the weekend, the doctor prepared a referral to emergency room, so that
if the baby got worse over the weekend he could be hospitalized without delay.
Lilly describes Guy that Friday afternoon as alternating
between inconsolable fits of crying and episodes where he was completely
unresponsive and limp – “apathetic” – which frightened her even more. Worried,
Guy’s parents took him to the hospital. Lilly says “without hesitation they
hospitalized him and put him on IV.  It
took them a while to be able to find and access his veins because he was
getting dehydrated. And they hospitalized us and gave him fluids and monitored
him – no medication, because it’s a virus.” She called her mother from the
hospital, gave her the news and a list of necessities to bring – since Lilly
had packed nothing for a hospital stay.
Lilly stayed with Guy constantly in the same ward, sleeping
on a couch next to his hospital bed. She says: “Together with Guy there were
ten more babies in the same ward hospitalized because of rotavirus. The door
said “isolation”.  Every time someone
went in or out they had to wash their hands with anti-bacterial soap.  All the mothers were attached to their
babies. It was a nightmare.”
Sara visited her daughter and grandson the very next day.
She arrived just as Guy was being taken for an examination by the doctor, and
she carried the IV while Lilly carried the baby. She says: “he cried so hard,
it broke my heart. He was so miserable.”
After four days in the hospital, Guy was released.  On the way home in the car he started vomiting
and having diarrhea again.  Lilly says:
“when we got home it continued, and he looked bad – he looked pale, apathetic.
He could not cry, he was so exhausted. So we said, there’s no choice, let’s
take him back to the hospital. By then it was night time – 8-9pm.” Again, they
checked Guy in, again, the search for a vein to insert the IV into in the
dehydrated, miserable baby. And three more days of  the ward, with an unhappy baby hooked up to
IV, with ten other suffering babies, with bad sleep on a couch, with stress,
pain, and worry.
And then he got better, and they took him home, and this
time he stayed better.
Lilly and Sara also know they were lucky: living in
an industrialized country, with easy access to a universal healthcare system
and very good medical care, Guy got the help he needed quickly. According to
the World Health Organization, hundreds of thousands of children die from
rotavirus every year and millions are hospitalized, most – but not all –  in developing countries, though the numbers
are declining, thanks to the availability of a vaccine against the disease. In the United States, prior to the vaccine, “rotavirus infection was responsible
for more than 400,000 physician
visits, more than 200,000 emergency department (ED) visits, 55,000 to 70,000
hospitalizations each year, and 20 to 60 deaths.” See also here, for a previous story about and discussion of rotavirus.
Still, even with the best care, Lilly describes the
experience as “stressful, painful, worrying”. 
“I haven’t heard of rotavirus before this,” said Sara. “I raised four
children, and we went through several childhood illnesses – there was no
vaccines for some of them, and they had mumps, rubella, and a host of digestive
issues. They had diarrhea; I remember a night when my daughters were four or
five, and they went to the bathroom in turns for about 18 times, one by one.
But I don’t remember anything close to this bad. Since then, just hearing the
name “Rota” gives me chills. I think the vaccine Lilly was most eager to give [Guy’s
younger brother] was Rota.”
Lilly says, “but there was no vaccine available at the time,
if there had been one we would have given it to him. We made sure to vaccinate
our second child, there was a vaccine then, and it was never in doubt.”

Image from The Public Health Library, Provided by Dr. Erskine Palmer:  http://phil.cdc.gov/phil/details.asp?pid=178

Acknowledgements: I would like to thank Stacy Hillenberg, Clara Obscura, Meleese Pollock and Alice Warning Wasney for comments on drafts, as well as my interviewees, Guy’s mother and grandmother and his grandfather. All errors are, of course, my own. 

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Rubella: the Unborn Pay the Price

In 1972, Anna and Robert Robak visited the doctor; Anna was
pregnant, and she also had a rash and a fever. Although a first test came out
negative for rubella, a second test came out positive – but the medical staff
did not inform Anna of that fact. Their daughter, Jennifer (Jenny) Robak, was
born on January 12, 1973. The court case describing their story focused on whether Anne can sue the doctors from
not alerting her to the fact that she had rubella – information that would
probably have led her to abort the baby, because of the potential harm to Jenny
from the virus. Indeed,  Jenny had
Congenital Rubella Syndrome, and suffered serious harm from it. 
The court described the effects on the child: “At the time of her birth, Jennifer had a
rash all over her body. She was also suffering from a loss of hearing,
bilateral cataracts, a slight heart defect and possible mental retardation all
common symptoms of a rubella syndrome child. Since then, Jennifer
Robak has undergone two operations to remove cataracts. She has undertaken
occupational and physical therapy and special training and education for the
deaf-blind. She is industrially blind and has a severe to profound hearing
loss; she cannot speak intelligibly. Glasses, contact lenses and hearing aids
have been of only limited use. She will need deaf-blind care and supervision
for the remainder of her life, as well as further operations.”
Jenny is just one
of the many children harmed when their mothers had rubella during the first
trimester of pregnancy. Rubella is normally a mild childhood illness, but if it
affects a woman in the first 16 weeks of pregnancy, it can have devastating
consequences for the fetus. The CDC explains: “During the 1962–1965 global rubella pandemic, an estimated 12.5
million rubella cases occurred in the United States, resulting in 2,000 cases
of encephalitis, 11,250 therapeutic or spontaneous abortions, 2,100 neonatal
deaths, and 20,000 infants born with CRS.” 
Children
suffering from Congenital Rubella Syndrome – the ones that survive – often have
severe vision and hearing problems as well as other problems. A vaccine expert writes: “..no organism
is more common, more thorough, or more consistent in its destruction of unborn
children than the rubella virus.”[1]
Here is a story
from another mother who describes her daughter’s problems as relatively “minor”, which she attributes to the immune-globulin she received when pregnant:
“She had congenital
cataracts, a mild hearing loss, very mild cerebral palsy and an atral-septal
defect in her heart that closed on its own about age 4.
Overall, her development was quite slow. She didn’t walk and talk until
she was 3 and 4 years old. In that respect, the congenital rubella showed its
effects. She gained weight slowly. When she was 4-yrs. old, she developed
glaucoma in her right eye which led to its removal. Her left eye still had some
vision, but she was classified as “legally
blind.” “
Not surprising, before vaccines parents were anxious to make sure their
daughters contracted rubella at an early age, before the possibility of pregnancy
arose. Jean said: “My mother made certain that I attended “rubella parties” until I contracted the seemingly innocuous 3-day rash. Every mother knew that contracting rubella during pregnancy could lead to miscarriage and horrific medical consequences for babies infected in utero (the vaccine was not available until the late 1960s)”. And pregnant women worried. Annie
remembers vividly what happened to her mother. Annie was part of a family of
seven, five living children born out of 8 pregnancies. Annie’s mother did not develop natural immunity to childhood diseases. She
had rubella eight times, says Annie. She lost two unborn babies to rubella and
one to measles. Annie says:  “I remember I
was feeling a little ill. [her mother] called me into the bathroom and asked to see my
tummy and back. She took a deep breath, said German measles [rubella is also
called German measles] and started to cry. Then she looked at herself. She was
pregnant. The next day she was in hospital…she cried tears of JOY when she
miscarried her two-months baby. I now know why. Deafness, blindness,
retardation. These things were REAL to her generation and mine.”
Meleese, who taught at an elementary school, found herself
teaching the younger class for the deaf students, even though she was not
trained (she went and got trained the following year). She taught children from
preschool to age 8, with 5 or 6 in the class at a time. Except for one little
girl who had meningitis as a baby, all were rendered deaf through Congenital
Rubella Syndrome.
Meleese herself had the misfortune to get rubella at an older
age, at 21, while at teacher’s college. She describes the experience: “My
mother thought I must have already had it and she didn’t know as I was always
around outbreaks once even on a church camp. When I did get it I was the only
one in the residence to get it. I had so many spots they were all joined
together and I looked sunburned. My mouth and throat ulcerated and I was so
sick I needed 3 weeks off lectures.” The “housemother” where she lived sent for
a doctor, and Meleese was given several prescription medicine. For three weeks
she hardly left her room, with the housemother bringing her her meals. She
says: “The scary thing looking back was 4 girls got pregnant that year
and “had” to get married( those were the days!). I lived with them
and had lectures with them. Imagine if I had passed it onto them!”
The rubella vaccine is controversial because the virus is grown
on cell line taken from a legal abortion in the 1960s.  The abortions were not performed for donating
the cell lines – and it is illegal to perform abortions for that purpose.
Nonetheless, people who are pro-life may understandably object to having to
make the choice and may have doubts about using the vaccine. Here is a meme
addressing this:
Courtesy of
Refutations to Anti-Vaccine Memes, found at:
https://www.facebook.com/photo.php?fbid=507352126001468&set=pb.414643305272351.-2207520000.1373960888.&type=3&theater
The main points to remember are that rubella vaccine saves
fetuses, since rubella can cause not only fetal death, but also malformations
that can lead people to choose abortion, and that the virus for the vaccine is
grown on a cell line descended from just one legal abortion in the 1960s.  The vaccine does not include fetal cells, and
any claim that vaccine production involves (requires?) aborting fetuses now is
simply wrong. 
Because of its potential to save fetal lives, the Roman Catholic
Church,
a body that strongly opposes abortions, recommends the rubella vaccine.  It has issued an official opinion that warns:
“This [the need to accept the vaccine to prevent greater danger] is
particularly true in the case of vaccination against German measles, because of the danger of Congenital Rubella
Syndrome. This could occur, causing grave congenital malformations in the
foetus, when a pregnant woman enters into contact, even if it is brief, with
children who have not been immunized and are carriers of the virus. In this
case, the parents who did not accept the vaccination of their own children
become responsible for the malformations in question, and for the subsequent
abortion of foetuses, when they have been discovered to be malformed.”[2]
This post also analyzes the issue from a pro life perspective,
concluding: “The
cells that were taken from the two aborted babies more than 35 years ago are
much like my loved one’s heart. Two innocent babies were killed. However, they
were able to donate something that has been used not only to make vaccines, but
in many medical research projects over the years. Thus, these cells have been
saving millions of lives for almost two generations! Although the babies were
clearly murdered, the fact that their cells have been saving lives is at least
a silver lining in the dark cloud of their tragic murder.” 
Rubella still harms children even in the first world in places
like the “bible belt” in the Netherlands, Japan and Poland, and
recently seems to have come back to the United States. The rubella
component of the MMR can save the lives of fetuses and save babies from
disability and suffering. For these children’s sakes, it’s important to
vaccinate.
Acknowledgements:  I am grateful to Alice Warning Wasney, Meleese and Annie for feedback on drafts of this post. 

[1]
Paul A. Offit, Vaccinated: Triumph, Controversy, and an Uncertain Future
(2009), p. 71.
[2]
Footnote 15.
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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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Three Women, HPV and Cancer

The
HPV Vaccine has a bad reputation and low uptake,
in spite of evidence supporting its safety including very large scale studies,
and growing evidence of its effectiveness. But it is a vaccine that has the
potential to save many, many lives, especially in developing countries but not only: in the United States, for example, close to 12,000 women develop
HPV related cervical cancer each year,
and in 2009, 3909 women died from it. Over 90% of invasive cervical cancers in the world contain some strain of HPV. The strains in the vaccine are responsible for approximately 70% of cervical cancers. HPV can also lead to other cancers. In a recent news story, Michael Douglas announced that his throat cancer was the result of HPV contracted through oral sex. 
In
this post, three very different women talk about their struggle with HPV and about
the effect cervical cancer had on their lives. All of them emphasize how lucky
they were: they all survived, and they all survived without a hysterectomy, and
two of them went on to have children. But they hope in future, fewer women
would suffer as they did. The stories should also highlight that this can
happen to any woman, regardless of life style and family history.
Because
of the private nature of these stories, at the request of two of these women,
their names were changed.
Lynette’s story (name changed to protect
the speaker’s privacy):
When
Lynette married in 1975, at the age of 27, her husband was the first man with
whom she had a sexual relationship. Lynette explains: “With the HPV my husband had a wart on his penis.
I was naive even though I was 27 and didn’t realize what it was.” The HPV was
discovered shortly after the marriage, when she was pregnant with her first child: “I
noticed I had “lumps” on the outside of my vagina, not realizing they
were warts or how I got them. I went to my doctor. My vagina and cervix were
riddled with them. I had to undergo 2 operations under general anesthetic when
I was 5 and 7 months pregnant. Doctor said the pregnancy had allowed them to
flourish. I remember the second op report said I had more than 100 lesions.”
Lynette considers herself lucky: after the second operation, she did not have
any recurrence of the warts. But she believes the operations she had to undergo
directly led to her son’s health problems: ”..he was only 6 and 1/2 pounds (babies
2 and 3 were both nearly 9 pounds).” She mentions a variety of health problems
her child suffered.  In spite of her
initial bad luck – getting HPV from her first husband and partner, having to
undergo two surgeries while pregnant – she did not have lasting damage. She did stay under close medical supervision: for the next 15-20 years, Lynette had to undergo annual pap
smears. She went on to have two more children with her second husband.  
Ironically, Lynette
heard horror stories about the HPV vaccine. At that time, she explains, she got
quite a bit of information from the unreliable site Natural News. So, “I flipped out
when my then 22 year old daughter told me she had had the first in the Gardasil
series. I was believing the stories about girls dropping dead, becoming
disabled. She rolled her eyes and told me not to believe everything I read on
the Internet. That’s when I decided to do some more investigating…” Upon
investigating, Lynette learned how unreliable the information she found on anti-vaccination sites really
was. She now devotes time out of her busy schedule to respond to anti-vaccine
claims, and firmly encourages parents to get the HPV vaccine for their
daughters, to protect them from what she went through.
Annie’s story (name changed to protect the
speaker’s privacy):
Annie
grew up in California, a child of the 1960s. She explained: “I frolicked about;
so did most of my sexual partners.” While in college, she met her first
husband, and they married. However, Annie explains, “when we got out into the
real world, it became apparent that the things that made us get along in
college didn’t work”. They divorced, and sometime later she married her second
husband, who had two children from a previous marriage, and they added a
daughter to the family. Shortly after the marriage, the children’s mother –
Leah (name changed to protect the person’s privacy) moved nearby, and the
children started spending a week in each household. Annie and her
step-children’s mother became very good friend; good enough that when Leah had
cervical cancer Annie knew of it and could appreciate and sympathize with the
pain Leah went through. Leah had to undergo a hysterectomy. Annie described
this as “painful and really, really difficult.”
When
Annie’s own cancer was discovered she had Leah’s story to inform her and Leah’s
painful experience to add to her fears.
It started with an abnormal pap smear that led to further
tests. Annie describes what happened next: “finally it was determined that it
was sufficiently suspicious that I did a cone biopsy. You see, the cervix is
kind of like a donut with a tiny opening (that gets enlarged when you give
birth). So for a cone biopsy they take, they excise, a cone of the cervix.
(Annie added, looking at my reaction: “Dorit has a painful expression on her
face”). Typically it’s done under general anesthesia, and while I was under the
anesthesia the surgeon did, I forget what it’s called, it’s when they sliced
the excised material really thinly, and it did have cancer cells. Basically
because if there was a sufficiently suspicious mass they would stop the surgery
and wake you up and schedule you for a hysterectomy, which is still the primary
treatment for cervical cancer… But I was lucky and that lesion was very
localized. It was a carcinoma in situ, so it hasn’t spread anywhere, but it was
a good thing that I was done having my family, because as the surgeon explained
afterwards I probably wouldn’t be able to carry an infant to term. Because of the
amount  of scarring to the cervix. I had
two weeks of being pretty darn uncomfortable, not as uncomfortable as after
child birth but still painful.”
Annie explained that she was not scared for her life,
because “I knew that the chances of this being a highly survivable cancer were
very high, and there has been no metastasis. But I was scared about having to
have a hysterectomy because that is a major surgery and I knew from my friend,
because she did have a hysterectomy, and it was painful and really, really
difficult, so I didn’t want that. “ Luckily, she did not need a hysterectomy and after the surgery
Annie did not even have to have chemotherapy: everything was removed. She says
“I just had to have pap smears every, it seemed like every five minutes … I
still have to have them more frequently, but not every five minutes.”
Annie concludes: “What makes me such an advocate of HPV is that it prevents disease, number one, and number two, if I had been younger, I
wouldn’t have been able to have children. … I really don’t understand the
anti-HPV. As soon as it was available I encouraged my daughter to get it. It
came available just after she turned 18, still in high school because her
birthday is late. I encouraged her to get it, she did.”
Megan’s Story:
Before discovering her cancer, Megan had four children. Her
eldest daughter was 16, and she says: “in 2000 I went to the doctor because I thought I might be
pregnant, then I did a smear test, and turned out I was four weeks pregnant and
the test came back with a nasty result. Then they said I needed a punch biopsy
to find out what was going on and there was a 75% chance that I’d lose the baby
with a punch biopsy; so I told them if they touched me I was going to break
every bone in their body then I’d go after their families.” Megan continued her
pregnancy and did not have the biopsy done until her daughter was 7 months old.
“…and it turned out that I was stage III, which over here it’s one stage down
from terminal, that’s where we were, and they took me to the hospital to do surgery,
and they removed a great deal of my cervix, didn’t remove all of it but they
did remove quite a large chunk of it, and we came back another month later for
another smear test and an internal so they could have a look and see what
everything looked like, and it seems when they went in to remove it they got
everything. For which I was thankful. That’s why I was so lucky.  I thought I had been given a death sentence,
and it was just a hiccup, really.  They
caught it early enough that I didn’t need any chemo or radiation therapy at
all.” Megan was required to have another pap smear test every three month for
the next three years. For two further years she had to have a pap smear
annually. All in all, she describes the aftermath as “constant smears, tests,
and treatment, for about 6 years”.
Nonetheless, Megan says: “I was very lucky, they did not remove
anything essential. They told me they removed more than they felt they needed to
because they wanted to make extra sure they got it all. II
was one of the really really lucky ones because I survived. And I went on to have
more babies… what I went through was nothing, and I know that in my head, it
was nothing compared to most women who have the cancer, most of them have to go
through radiation and chemotherapy and there’s no guarantee that any of that is
going to work.”
Lynette, Annie and Megan survived. None of them had to undergo a
hysterectomy, as many women who have cervical cancer do. They are strong women,
and talk about their experiences in a very matter of fact, occasionally
humorous, way. But they urge other parents to offer their daughters the
protection available against HPV, which will substantially reduce their chances
of suffering in the way Lynette, Annie and Megan did, having to undergo a
hysterectomy, or losing their lives.

Acknowledgements: I’d like to thank Michael Simpson and Alice Warning Wasney for their help with this post, and of course, my three impressive interviewees. 

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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. 
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Meningococcal: Stalker of our young.

Chuck
was an “Artful Dodger of a cad”, says Maggie. At 14, the 9th 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]
******
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: .
****
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.

******

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. 


[1]
Paul A. Offit and Charlotte A. Moser, Vaccines and Your Child,  196 (2011).
[2]
Id.
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