Too Close for Comfort: Rahel’s Experience with Chicken Pox

It was a hard time for Pamela as it was. Her husband had just died, and she found herself alone with four young children, three boys and a girl. Her oldest, at six, had just started first grade. Her second son was in Kinder Garten, her third was three, and her daughter was still a breastfed baby, at seven months. The youngest two were home with her, and the focus on them helped, though she was lost and upset, trying to find some normality in a world turned upside down.

Baby Rahel was already sitting on her own and had just started pulling herself to a standing position.

And then it started. Says Pamela: “One day my oldest came home acting a bit 'off'. Later that evening, when I took his clothes off, I noticed a blister under his arm and at first thought that his clothes had rubbed against his skin. I have to add that my oldest is handicapped and has extremely sensitive skin, so that was also a possibility. Anyway, the next morning he was covered in blisters.”

The child’s fever shot up, “quite high”, Pamela said. During that second day, her second son started to get sick, followed by her three-year-old the following day.

All of them suffered substantially, says Pamela: “[the eldest] had blisters mostly on his torso and his fever went away after a few days, once the blisters started to dry up. [her second son, five years old] had it bad, the back of his knees was so covered he couldn´t even bend them and he also had blisters on the inside of his eyelids. [her third son], three, had a very high fever for several days and was covered from head to toe."

At first Pamela thought the disease spared baby Rahel – “we got lucky with her.” Pamela herself knew that a few years earlier, when her titers were measured, she had high levels of antibodies; she believed breastfeeding Rahel protected her against the chicken pox.

She was wrong. A few days after the boys were sick, as they were healing, “I woke up in the middle of the night to her whimpering. When I turned the light on, I was in shock: she was covered with blisters and had a really high fever.”

“During the course of the day, she got more and more spots and her fever got higher so we called our pediatrician . He came to the house (as he usually did in very serious cases) to check on her and prescribed some calamine lotion and something to bring the fever down a bit.”

The pediatrician was shocked. He was an experienced pediatrician – who took care of Pamela herself as a baby. He said that in his many years practicing, this was one of the worst cases he had ever seen.

Rahel was not getting better. After a little while, says Pamela, “there were more blisters on her than normal skin. It was awful, she had a raging fever, was so weak she couldn't even feed anymore and could only whimper. Her eyes were red and light-sensitive, horrible.” The pediatrician, asked to visit again, took one look at the baby and called an ambulance. Pamela and Rahel were taken to the hospital; Rahel arrived with a fever of 41 degrees Celsius, 105.8 Fahrenheit. They was immediately admitted to the isolation unit in ICU, where Rahel was attached to monitored and an IV inserted into her arm. She was given fluids and anti-viral medications and medication to reduce her fever. Pamela was very, very frightened.

The pediatrician said it was the worst case he had seen in his many years practicing. He asked permission to give Rahel a new drug that has just come out, explaining that without something to help she would die anyway, and that way, she at least had a chance. Rahel was not really conscious – but Pamela was both scared and distressed. She says: “It was horror. After losing my husband a month earlier, I thought, now I am losing my only daughter as well.”

Pamela and Rahel spent four days in ICU, and then several more days in the hospital. Recovery at home was long. Rahel, previously active and already pulling herself to a standing position, was so weak she could hardly lift her head. She had lost 15% of her body weight – a lot, for such a young baby. The blisters left on her body covered her all over, including her diaper area, kept getting infected and oozing, and had to be covered with antibiotic ointment. It took many weeks for her to get anywhere near normal.

Pamela feels very strongly about vaccination. Having been through such a traumatic experience, she cannot understand why a parent would not vaccinate their child against chicken pox. The disease might be mild in many cases, but it can kill (See, for example, here and here) or lead to seriouscomplications and suffering. The vaccine, on the other hand, is extremely safe (see also here), and although a child can still get chicken pox after it, it is almost always a much milder version:

Meme provided courtesy of the Facebook page Refutations to Anti-Vaccine Memes: https://www.facebook.com/photo.php?fbid=505923146144366&set=pb.414643305272351.-2207520000.1379638360.&type=3&theater  

Rates of shingles among vaccinated children are also substantially lower than among unvaccinated children.

Pamela is clear: if she could at the time, she would have vaccinated her children against the disease. Her main reason for sharing her story is so that other parents realize how dangerous chicken pox can be, and take precautions to prevent their kids suffering through something like this. 

Acknowledgements: I'm grateful to Pamela for sharing her story and to Alice Warning Wasney and Clara Obscura for reading and commenting on my draft. All errors are, of course, my own. 

A March of Diseases

Peter was  born in 1945. He has one older sister and one younger. He remembers his miserable experience with both chicken pox and measles. He was lucky, he knows, not to have any complications from either disease, but young as he was, he remembers his experience with both as quite unpleasant.

Peter was not yet six when he had the chicken pox.  His older sister got it, and he got it a few days after. His parents feared that the youngest, his two-year-old sister, would also get it. Luckily, she did not. Peter says: “I think we were both had the running sores at the same time. That was pretty miserable.”

Peter remembers being  “slathered with calamine lotion several times a day and having these big pink splotches everywhere. Although it was standard treatment at the time, it didn’t seem to help much.” He doesn’t remember how long he was sick for, but “the temptation to scratch was so intense that for a few days I know I was wearing my kiddie-size boxing gloves that I had gotten for Christmas the year before.”  It was his parents’ idea, and “they definitely kept me from scratching.”

His measles experience, at around ten years of age, was also memorable, though he seemed to have had a mild case, since he does not remember feeling particularly ill. He does vividly remember having to stay in a darkened room and not being allowed to do anything at all. Any mental stimulation or excitement was thought to be bad for a child with measles at that time. It was summer, and he missed the Fourth of July fireworks, and playing with sparklers, and was upset that he could hear his sisters enjoying themselves outside. An avid reader, he was not allowed to read, and felt that deprivation keenly.

Two summers in a row, a little past his tenth birthday, there were polio epidemics. They were not allowed to go to crowded public places, including beaches, amusement parks, municipal swimming pools, even to the movies. “It was basically stay-close-to-home time. We were worried to death. At one point we were in a doctor’s waiting room and a kid came through who had been exposed to someone who had active polio, and I had a few days of worrying about that, though I now realize the risk was very small. That’s how strong and pervasive the fear was before the Salk vaccine.”

He remembers seeing and reading about iron lungs, the iconic symbol of polio. They were tubular metal tanks in which one lay, with only one’s head sticking out. A tight seal around the neck isolated the tank from room air pressure, and a piston decreased the air pressure inside, drawing air into the paralyzed person’s lungs.

Picture taken from: http://en.wikipedia.org/wiki/File:Iron_Lung_ward-Rancho_Los_Amigos_Hospital.gif.  

Later, as an adult, he got a close-up experience: “…I started working for a med school, and … we had a few old iron lungs tucked in the back of one hallway.  Before they were disposed of we actually got a chance to see what it was like to be in one. It was quite strange having the air go in and out with no effort on your part. They even had a cough setting which would actually force you to cough by a rapid motion of the piston.”

Asked how it felt, he said: “I’ve never been particularly claustrophobic (until the first time I had an MRI of my head) so I didn’t have that feeling, but the seal around the neck was not terribly pleasant—then again, if you were in one of those things you probably wouldn’t be able to scratch it anyway. But the knowledge that this machine is breathing for you, even when you could breathe on your own, that was a little strange. I don’t know if I can get my head around what it would be like to have to breathe with that machine.” 

In 2008, he mentions, the last person dependent on an ironlung in the United States died – not of her disease per se, but from a power failure.

There were almost always children in every school Peter attended that had legs in calipers (Americans call them braces). He vividly remembers a boy who sat next to him in a class whose right arm was nothing but skin and bone from polio. “I had a strange fascination with it; I’m sure he thought I was extremely rude.”

A memory from a later age also remains with him: “When I was in college, I went to a  mixer, …  and I saw this stunningly beautiful girl sitting at a table. I went over and made a little chit-chat, asked her if she wanted to dance and she said “No, I can’t.” I stupidly asked why, and she just kind of turned away and waved me off, making a “go away” gesture with her hand.  Later in the evening I saw her leaving the area where we had the mixer and she was walking with a pronounced limp. One of her legs was just skin and bone. ”

While Peter did not have other vaccine preventable diseases, they were in the background – whooping cough, mumps. He remembers mumps “was going around when I was in my teens and my mother I recall being concerned that I would get it because I’m the last male in my particular patriarchal line and I had ‘a responsibility to carry on the family name.’ ”

In high school, there was a classmate who died of meningitis. “It was early in the week, Monday or Tuesday, and in Latin class Miss Gardner started talking about a girl who was absent, whom I didn't know very well, and the way she was talking—"it was meningitis, and it was very quick"—and I was thinking "Wait, what? Someone died?" Yes, someone in our Latin class died of meningitis over a weekend. I'm told that because of the vaccine, most doctors these days have never seen a case of it.”

Peter also remembers having the flu as an adult. He says: “it’s not a bad cold. It feels like you’ve been hit by a truck. If the air is circulating in the room and your hair moves it hurts. Just incredible hypersensitivity to any sort of touch to the skin. Any effort at all would cause me to start sweating, and I could feel the droplets flowing across my scalp. They hurt."

More recently, in 2009, Peter lost a Facebook friend to H1N1 flu. He describes her as a “very colorful woman; absolutely unforgettable.” To protect her privacy, he asked not to disclose her name, but he said: “When she was first taken sick, she kept going on — posting on Facebook — about how bad she felt. Really, really bad. She was hospitalized and it was reported that they were still trying to figure out what she had, and a few days later some family was there and all of a sudden she sat bolt upright, stopped breathing, fell back and she was gone; they couldn’t being her back. And it turns out that it was H1N1 flu, verified by PCR testing.”

Peter says: “When the H1N1 flu vaccine first came out, one of my Facebook friends asked our circle if we thought she should get the vaccine. Despite the fact that that particular group leans strongly toward “alternative medicine,” the discussion was fairly polite. Some of the usual misinformation was shared, like “I got the flu from the vaccine; never again,”  and she said that she'd decided to take her chances because the "natural" immunity was "better,” and I thought, “To get the natural immunity you have to get sick as hell for two weeks; what is wrong with you.” I don’t remember whether I posted that or not; sometimes it’s best to just accept that people won’t make the best choice despite your efforts.”

“Pro-vaccination?” Peter concludes.  “I'm as pro-vaccination as it gets.” Knowing what he knows, seeing what he has seen, he does not understand how anyone could be otherwise.

Carmela’s Ordeal

This blog post is based on a chapter from the book Nettie: Tales of a Brooklyn Nana, by Peter Franzese (http://www.amazon.com/Nettie-Tales-Brooklyn-Peter-Franzese/dp/1420807633/ref=sr_1_2?ie=UTF8&qid=1378146197&sr=8-2&keywords=nettie+tales+of+a+brooklyn+nana).  Carmela was the elder sister of his grandmother, Nettie.

Carmela Carrano was born on September 2, 1912, in a six-family tenement house at 60 Kingsland Avenue in Brooklyn that was gas lit and where an airless hallway bathroom was shared with another family. She was the 7^th of 11 children born to Maria Carrano between 1898-1925. The sisters – there were five at the time – all slept together in a large bed. Carmela was severely bow legged and had difficulty walking, but in spite of that difficulty and the teasing other children subjected her to, she was a sweet, kind-hearted girl.

This is Carmela at her confirmation with her confirmation sponsor. Her bow legs can be seen in the picture. This picture is posted courtesy of Peter Michael Franzese.

Peter says: “She looked out for her younger sister, my grandmother, and always worried if my grandmother had her school supplies and would make sure my grandmother was ready for school.  She was also devoted to her mother, even though she was small.” Peter’s grandmother was 2 years and 13 days younger than Carmela, and the two were very close. Peter’s grandmother would walk to school with Carmela every day; she was always sad when kids at school taunted Carmela over her bowed legs. The kids would tease Carmela about her “bandy legs.”

But aside from her legs the kind, gentle child had no serious health problems.

“Then,” says Peter, “on August 25, 1922, she had been playing with a cousin all day, when she suddenly was stricken with high fevers and lancing headaches. The neighborhood doctor was summoned to the house, where he diagnosed her malady as viral meningitis.”

This far back, we don’t know if Carmela actually had viral meningitis and if so what caused it, though the CDC lists a number of vaccine preventable diseases among the causes, including mumps, “varicella-zoster virus (which also causes chicken pox and shingles), measles, and influenza.”

Debbie Fearon, a pediatrician from Australia, isn’t sure. “The death rate from viral meningitis in otherwise healthy ten year olds is very low.” Debbie and other physicians aren’t sure, on these facts, what Carmela actually had. But at any rate, the little girl suffered horribly. Carmela lay in bed, her fever burning, her head splitting. The house was quarantined – she was trapped in there, with her parents and seven siblings and all the families in the tenement. There was nothing they could do for her.

She screamed her agony.  For nine days, she screamed day and night, non-stop. Towards the end, she was stricken blind. The other children, the other neighbors, never forgot her screams. Peter says: “The thing that stayed with the children in the house was the screams that seemed to never end over those 9 days.”

This picture of Carmela was put up in a place of honor in the apartment of her older sister, Rose. Picture posted courtesy of Peter Michael Franzese.

She died on September 2, 1922, the day of her tenth birthday, in the same house in which she was born, via a midwife. Her wake took place in the same apartment, too. Dressed in the same beautiful dress in the photo above, she was laid in a casket. Peter remembers how “Her brother, Jimmy, filled the pots to represent the tears their mother shed with water,” – a child’s effort to express the deep, painful sorrow he saw his mother suffer through.

Peter describes her funeral procession: “Her casket was brought to church in a white horse drawn carriage with white horses. Their heads were bowed. As the horse drawn hearse was pulled from her home to church, the girls who she had made confirmation with walked along side dressed in their white dresses.

She is buried with her parents at St. John's Cemetery in Middle Village, Queens, NY.

It wasn’t unusual to lose a child at the time; Peter describes the experience of his great-great-grandmother on the other side of the family: “My great-great grandmother came to America in 1895 and between 1892 and 1914 she had I believe 12 kids...and buried 8 of them ...some babies and some adults - so, I guess, Maria Carrano was lucky that she only lost one child compared to my great-great grandma Luppino.”

But Carmela’s death left a hole in her mother’s heart: “For 35 years her mother travelled [to Carmela’s grave], mostly by foot, to visit her daughter. Just because she had 10 additional children, that one child was never far from her mind.” 

Others remembered Carmela too, her life and her death. Her sisters never forgot; and her neighbors. Peter described how the last person who knew Carmela – a child of a tenant in the building, who met Carmela in 1917 (and died in 2011, at the age of 101) – still remembered her 90 years after her death and “spoke with such a vivid description of this little girl she had not seen in 90 years”.

Carmela was remembered. Partly for her kindness, partly for her painful, too early death, in an era when there was nothing to protect her against disease and when no one could help her. 

Acknowledgments: I am grateful to Peter Michael Franzese for sharing this story, and to Melody Butler for bringing it to my attention. I am grateful to Alice Warning Wasney for reading the draft and to Debbie Fearon and other physician  friends, including Carolyn Bursle, Amy Eschinger, and Khedron Frank, for discussing Carmela's illness and offering insights.

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.