Parents PACK Personal Stories – Polio

A Brother’s Disease. A Mother’s Worry. A Daughter’s Vaccine.

Editor’s note: This article is published in memory of Georgie Wiggins, 1927-2018, who, according to her family, was “A most formidable woman, who inspires her family to this day.” We hope Georgie and her family inspire you as well.

Georgie Wiggins wrote letters — first to the queen of England, then to the prime minister, the minister of health, and all the way down to her local hospital staff — trying to make sure her daughter, Amanda, was one of the first children in the United Kingdom to receive the polio vaccine.

Later, their family lived in Zambia helping administer medical aide, including vaccines, to those in need. Georgie’s fierce belief in science and vaccines was shaped by her brother’s, Ivor, experience with polio as a child.

Recently, the VEC caught up with Georgie’s daughter, Amanda McIntosh, to talk about Ivor’s polio and its effect on their family. The following conversation has been edited for clarity and length.

Can you share what you know about your uncle’s experience with polio?

My Uncle Ivor was my favorite uncle, probably because he always had time for his nieces and nephews. He was not married, and although he walked with the aid of calipers and two crutches, he preferred to use them as little as possible. He had a large number of stories, telling of the daring things we (his nieces and nephews) did — always casting us as the heroes who saved the day.

When my mother was almost 3 years old (in 1929) and her brother nearly 8, he caught polio. My mother remembered seeing Ivor in the hospital in a machine that she was told did his breathing for him. She recalls the adults talking in very hushed tones and not answering questions. My other uncle, Ivor’s older brother, said that it was a very dark time for the family.

Ivor recovered after many, many months at Great Ormond Street Hospital. Then he was sent away for rehabilitation.

Once Ivor returned home, the family adapted to their “new normal.” My mother, the then-youngest of the three children in the family, talked about riding in a special double pushchair alongside Ivor. She also fondly remembered cricket matches on the back lawn with Ivor as a demon wicket-keeper seated on the ground behind the stumps.

How do you think it impacted your mother seeing her young brother affected by the disease?

Although my mother accepted Ivor as he was and simply got on with life, she knew how hard it was for him and how upset her mother, my grandmother, was about the disease. My grandmother always questioned whether she could have prevented Ivor’s illness. No one could explain to her how one child caught it and the other two did not.

Your mother was pregnant with you in Great Britain in 1953, before the polio vaccine was available in that country. Tell us about how you ended up getting the polio vaccine.

My mother recently died in her early 90s, but in one of her last conversations, she casually mentioned that I was one of the first babies in the United Kingdom to be vaccinated against polio. On further questioning — and how I wish that we had thought to record this — she said that just before I was born in 1954, there was a major outbreak of polio. She remembered that she had recently read about a new vaccine to prevent polio. She desperately wanted it for me.

So, after I was born she started writing letters. When we questioned who she wrote to, she replied, “Well the Queen of course,” then the minister of health, the prime minister (who was Winston Churchill at that time), the leader of the opposition (party), Great Ormond Street Hospital, the county office of health, and anybody she thought might help. The only one who replied was Prime Minister Churchill, but unfortunately the letter has been lost. Once the polio vaccine was released in the UK, I was one of the first to get it. 

Did she have other kids she was also trying to get vaccinated?

My sister (I am the eldest of four) was complaining that she had been inoculated at school and it “hurt.” Ivor told her she should be getting down on her knees and thanking God that she was lucky enough to have been protected from getting an illness like polio. That was the only time I ever heard my uncle say anything about having polio, “I would give anything to be able to get onto my knees, and I hurt all the time,” Ivor said.

Do you think your mother’s actions were helpful to your getting one of the first vaccines?

My brothers reckon (the release of the vaccine) was to stop my mother from writing any more letters. Once the bit was between her teeth, she never let go.

What was your mother’s opinion regarding vaccines as more became available?

My mother made sure we were inoculated against everything possible. Her favorite saying was “Science has gone far, but do you know how many viruses modern medicine can cure?” We would chorus back, “NONE.”

Can you talk about your experience in Zambia related to vaccines?

We moved to Zambia shortly after its independence. Mother took to delivering vaccinations to mission stations and outlying clinics in the bush. She would often take us in her Land Rover during school holidays. Outside the dispensaries, there would be long, long queues of mothers bringing their children for the vaccinations my mother had delivered. We once saw a riot break out when mothers heard that there was not enough vaccine to go around. They feared their child would miss out. Sometimes we would meet older people in the villages who had been stricken with smallpox when they were younger. Looking at their ravaged faces, one could only thank those who had developed an effective vaccine.

I remember those days often now that I work with refugee families and their preschoolers here in New Zealand. One of my tasks is to check whether the refugees have had their vaccines. I will never forget one mother's reply, “Amanda, I am a refugee — not stupid; of course, my child is up to date with inoculations.”

Your mother “fought” for vaccines when they became available, and the moms in Zambia did so as well. Today, some parents fight for the right to forgo immunizations for their children. With your life experience, what would you say to those parents?

I am old enough that the measles and chickenpox inoculations did not exist when I was a child. If only parents today could see the abject misery those diseases caused. I can recall waking up one day during my infection with measles and not being able to see. Thankfully, this cleared a short time later, but there were children in my village school who suffered long-term effects. Our headmaster's son suffered brain damage from chickenpox, which was not surprising to those of us living there at the time.  We knew that even if people survived, they may never be the same.

Please, please I beg of all parents, get your children vaccinated and keep up the booster shots.

Cami’s story: Poliomyelitis changed my life and robbed me of options open to others

If you are struggling with a decision about whether to vaccinate your child for an infectious disease, I urge you to read my story.

I was 7 when I contracted polio in 1954. No one knows how. I was a seemingly isolated case in our suburban community. I received immediate and excellent care and had the support of a strong mother, father and extended family and friends. Eventually, I made a good recovery. But, it was a long and sometimes painful struggle involving years of physical therapy, multiple surgeries, and watching others take for granted basic activities that were now denied to me.

Don’t get me wrong. My life has been rich … I have enjoyed friendships, been blessed with a loving husband, raised a family, had a career, traveled worldwide, and nurtured many interests. And, despite the limitations I lived with, I always had the attitude that “where there’s a will, there’s a way.” Others were always by my side offering support, but muscle weakness left by my childhood polio infection remained and is now exacerbated by age. Because of post-polio syndrome, I now wear two leg braces and walk with crutches.

My life remains rich, but I wonder how we have come to a time where people resist the factual advice of the scientific community and refuse known means to contain another deadly disease — COVID-19 — wrongly maintaining that it is their constitutional right and recklessly endangering not only themselves, but everyone around them. Living a life shaped by a childhood infection, to me, their decisions seem foolish, selfish, and deadly wrong.

Although I managed to overcome many barriers and have always had support, there is no doubt that poliomyelitis changed my life and robbed me of options open to others. The bottom line is that while one can survive a vaccine-preventable disease, it can have lasting impacts throughout life, affecting not only the survivor but also their family. The difference between me and children of today is that my parents had no choice. There was no vaccine for polio when I contracted it. Would parents today willingly choose to limit their children’s lives, or risk their deaths? Sadly, from my experience, by rejecting proven and safe vaccines that protect against measles, mumps, and rubella (MMR), COVID-19, and, yes, polio, that is exactly the gamble they are choosing to take.

In 2023, Cami shared her experience with the Infectious Diseases Society of America (IDSA). Check out “A polio survivor shares her story."

Catherine’s  story: "I couldn’t ever do what everybody else did"

Cathy was 2 ½ years old when she had polio. She had to endure months of therapy, multiple surgeries on her foot, leg braces that made walking difficult, and decades of living with post-polio syndrome (PPS) caused by the long-term effects of polio. Cathy shared her story and her perspective on COVID-19 vaccine for kids with our Parents PACK team.

Can you briefly recount your experience with polio?

I was too young to remember. All I know is what my parents told me. I was about 2 ½ when I contracted polio. I used to follow my father around when he came home from work and he noticed that I wasn't making a step. I couldn't raise my leg up high enough to make a step, and that went on for maybe two days, kind of dragging my right leg behind me. Then next came the fever of 106+. At that point, I was rushed to a hospital. I was up in Alaska because my father was in the Air Force. After they managed to get the fever down after some time, I was transferred to Valley Forge Medical Center where I spent most of my time recovering.

I remember sitting in a highchair, having a weight attached to my leg and having to swing my leg back and forth for a good while because the lower part of the right leg was the most affected. It was part of what they referred to back then as “muscle strengthening exercise.” I regained some use of my right leg, then I was in an old-time leg brace, the big brown shoe with the big hard metal bracing up to my knee.

How did your experience with polio affect you growing up?

I always had limitations. I couldn't ever do what everybody else did. I couldn't wear certain shoes because they just didn't fit right. I couldn't keep up with other kids. I've never been on roller skates since my one foot does not go straight; it just turns outward. Playing jump rope was an issue, but I tried my best because I was stubborn. And I pushed forward and pushed myself, and I was able to ride a bike, but some of it was tough trying to keep up.

In the early years until I was 8 years old, the effect on my lower right leg, the instep, where you have a tendon that allows your foot to make heel-toe movement, did not work. It was destroyed with the illness. So, I dragged my foot. It just dragged. And when I was 8 years old, we were in Langley Air Force Base, and there was a doctor who approached my mother about a new experimental orthopaedic surgery, called the Jones transfer, in which they took a tendon out of my big toe and transplanted it into my right instep, just to give me minimal heel-to-toe movement. And that worked for many years. I was able to walk a little better, not drag the leg, but still it was the clumpy orthopaedic shoes, and as a kid, you don't want people staring.

What might people not realize about post-polio syndrome (PPS)?

The scary point about post-polio syndrome is that by the time it develops, it's 40 to 50 years post the onset of polio. I was working during those years, and at night I would come out of work, and it felt like I was walking kind of on the inside of my ankle and my right knee was kind of bowing inward. And I would have tears in my eyes getting into the car at night because it hurt so bad. I was going to doctors and I would say I had polio a child, and they'd say, “Oh well, maybe try a neurologist, maybe they can find something.” Nobody could help me. Nobody even wanted to hear the word polio; it just didn't matter. They just didn't have any idea. One night, I went to the emergency room and it just so happened that there was this wonderful resident moonlighting that night. I told him I had polio as a child, and he said to me, “I want you to go see Dr. Marianne Keenan at Einstein [Medical Center]. She's doing wonderful things with people that have had polio.” And I did.

I wound up having to have a triple arthrodesis on the right foot, which fused my ankle because my ankle joint was just falling apart, basically. I also had an iliotibial band lengthening on the right side to realign my knee. And then I had a brace the whole length of the leg up to the thigh with a plate that pushed my knee back into place, and I wore that for months. Then from there I went down to a muscle brace below the knee. And two years later, I ended up with a different brace on my left leg, below the knee.

You lived through a time when polio was feared. How did you feel when COVID-19 came along?

To me, COVID-19 long-haulers today are the equivalent of post-polio syndrome because you don't know how long those people are going to have their symptoms. And I can’t understand those who are saying, “no vaccine.” I just don’t get them. They just don't understand how something they're refusing can affect them years down the road.

Some parents have expressed concerns about getting their children vaccinated against COVID-19. They say COVID-19 isn’t severe for most children. That was the case with polio too, but parents could not wait for a vaccine. What do you think is the difference between then and now?

Back then, people believed in their doctors. They had respect for their doctors and nurses and anybody in the medical field that had a little knowledge. They don't today. Nobody has respect for anybody just about. They challenge everything and sometimes it's not so good. The first thing everybody runs to is the internet for information, and instead they find misinformation. They put their own spin on it and it just is totally not right.

What message do you have for those parents who might be hesitant to vaccinate their children against COVID-19?

Maybe read some of these articles that we're putting out there from a person who has had long-haul symptoms. It's not fun. Yes, we survived and yes, we made a life for ourselves, but if I go out and I do a lot of shopping today, I can't move tomorrow. I have to sit in like a dish rag. I just don't have the energy. I do what I can and hopefully I make it through the day without falling.

COVID-19 is nothing to ignore.

Find out more

 

Catherine also shared her story in Patient Safety, the journal of the Patient Safety Authority. Check out her story, “I Never Had a Choice: My Lifelong Struggle With Polio,” on the Patient Safety website.

Janice’s story: Perspective of a polio survivor

Let me introduce myself: I'm a middle-aged woman, a wife, a mother, a future grandmother, and ... a polio survivor. I can recall my mother commenting that she was fortunate to have had her children before the age of "pregnancy scares" that peppered the media in the '70s and early '80s. My generation endured a fair share of frightening reports: One week, we'd be advised that it was perfectly OK to consume two cups of coffee each day. Seven days later, a report would be released that predicted dire consequences if we dared ingest a "nano-sip" of coffee.

Fast forward to today: As young parents, you cannot get through a day without hearing news reports on everything from toxic lead levels in toys to autism scares linked to anything and everything, including vaccines. I find myself repeating my mother's lament with a new twist: I'm glad that my greatest worries surrounded things like coffee consumption!

It's so difficult to be a parent these days, to somehow sift through the myriad of conflicting information and parenting strategies. It's for this very reason that I feel compelled to tell you a little story.

Let's take a trip back in time

In the early 1950s, the U.S. was challenged each summer by a virus 5,000 times smaller than the width of a human hair. The organism caused a disease called infantile paralysis (a.k.a. polio). The early symptoms of polio resembled the flu: fatigue, fever, aches and pains, vomiting, and stiff neck. But, those symptoms could quickly change to an inability to breathe without mechanical assistance, to paralysis of limbs, to lifelong deformities of limbs, to death — within a matter of hours.

Since 1916, the United States had endured yearly polio epidemics that left thousands dead and thousands more disabled. That first horrific epidemic, whose epicenter was traced to an immigrant section of Brooklyn called "Pigtown," infected 27,363 children across 26 states. Six thousand children, most under 5 years old, died that terrible summer and early fall.

More alarming still, was the fact that:

  • Each year the epidemics were getting worse. Public health officials were baffled by the mercurial properties of polio. One year, a community would experience many cases. The next year, few cases would be reported.
  • No one could explain the unpredictable nature of polio. Pregnant women were found to be especially susceptible to the virus. Boys were more apt to be paralyzed than girls.
  • The age of polio's victims was also getting older. By the 1940s, the average age of victims was between 5 and 9 years.

In 1952, our country experienced its worst polio year with 57,879 reported cases. An estimated 600,000 cases were reported worldwide that same year. 

Parents lived in fear of warm weather — polio weather. They adhered to all public health recommendations and warnings: Avoid large public gatherings, never allow children to swim in public swimming pools, and insist upon frequent hand washing. One of my peers remembers that her mother forbad her to eat peaches in the summer for fear that the virus could flourish in the "peach fuzz." Another friend was forbidden to attend church each Sunday during the summer months. As children born soon after the end of WWII, we were too young to appreciate our parents' terror. For us, "polio weather" was a terrible annoyance. Every time we turned around, our parents were curtailing our activities.

Enter DeWitt, NY (a suburb of Syracuse) in 1953

Frankie and Janice Flood (fraternal twins born one minute apart) were in first grade at Moses DeWitt Elementary School. They were busy picking out Halloween costumes and dreaming of the mountains of candy that would soon overflow their "Trick or Treat" bags. Frankie had a little head cold, so he stayed home from school in the hopes that a chest cold could be averted. Janice wished for a similar fate, hoping for additional playtime with her birth partner and favorite pal.

But, on October 30, 1953, Frankie began to have trouble breathing. He was rushed to City Hospital in Syracuse where a diagnosis was made, via spinal tap, of bulbar polio. He was immediately placed in an iron lung, a cylindrical machine that was designed to do the work of paralyzed muscles that affected breathing and swallowing. Only Frankie's head protruded from the yellow, 500-pound, 7-foot long mechanical "caregiver."

Janice was rushed to the hospital on Halloween morning to receive multiple doses of gamma globulin. Her parents had been told that, most likely, their other twin was already infected with the virus. Gamma globulin (a mixture of antibodies derived from human blood that sometimes prevented polio or lessened its severity in an infected individual) was the best that physicians could offer. The polio vaccine trial would not take place until late spring 1954 (six months away).  

Sixty-one hours after being admitted to the hospital, Frankie Flood succumbed to polio. His father had cradled him as best he could as he was whisked to the operating suite for an emergency tracheostomy. A New York State Certificate of Death recorded his death on November 1, 1953, at 10:25 p.m. On the night of his burial, Janice was admitted to the same hospital with a diagnosis of paralytic polio. Later on in the week, the twins' mother suffered a miscarriage. How quickly life had changed for this young family!

Ultimately, eight children in Frankie and Janice's classroom of 24 contracted polio. Although hospital records from that year are missing, some parents recall that over three dozen DeWitt residents were diagnosed with polio within a span of a few weeks, parents were frantic. Two of the twins' classmates died from complications of polio several years after the epidemic. The children were sisters, leaving the devastated parents childless.

In 1979, wild-virus polio was eradicated in the United States. But as late as 1988, 350,000 people in 125 countries around the world contracted polio each year. That same year, the Global Polio Eradication Initiative was formed. To this day, it remains the world's largest public health endeavor.

Back to present day

Polio is not eradicated worldwide, though the global case count has been drastically reduced. The public health community believes that polio can be eradicated, but time is running out. If eradication is not soon realized, it is now estimated that over 10 million more children will be paralyzed by mid-century.

There is no known cure for polio. Vaccination is the only prevention for the killer and crippler that prefers children as its victims. Any infected individual can carry the virus and infect any other unprotected individual anywhere he or she travels. Some public health officials describe polio as "a plane trip away, no passport required." 

I am Janice Flood Nichols, a middle-aged woman, a wife, a mother, a future grandmother, and ... a polio survivor who still misses her twin brother, Frankie, and two of her classmates. I fought hard and long to learn to walk again. I fought harder still to navigate the rocky road of grief following Frankie's death.

As a mother, I know all too well your desire to protect your children from any and all harm. Sadly, I know that that is an impossible task. All we can do is our best, with "best" becoming a pretty confusing, sometimes terrifying task these days.

I ask you to address your vaccine concerns to your medical providers and to receive accurate vaccine information from well-documented sources. The Centers for Disease Control and Prevention and the American Academy of Pediatrics offer excellent Web-based information for parents.

I continue to pray that polio remains a thing of the past in the United States. As more and more parents question the necessity and safety of vaccinations (primarily because of inaccurate information that has flooded the airwaves and the Internet), I must confess that I am worried.

About the author

Polio survivor Janice Flood Nichols is the author of Twin Voices: A Memoir of Polio, the Forgotten Killer (honorable mention recipient of the 2007 London Book Festival award in both nonfiction and biography). Nichols holds a Bachelor of Arts in Psychology from Seton Hill University and a Master of Education in rehabilitation counseling from the University of Pittsburgh. She has been employed as an instructor in the social work graduate school at Syracuse University and in the social service department at Community-General Hospital, Syracuse, NY.

Reviewed by Paul A. Offit, MD on October 17, 2022

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