100 years after a pandemic — what could have been

Meet the Kuhlmann Family. George, Fannie, and their nine children ranging in age from 11 years old to newborn. Pauline Elizabeth Kuhlmann is George and Fannie’s 9-year-old daughter.

Within the span of four days in March 1918, 9-year-old Pauline experiences the death of both parents, George and Fannie, her 14-year-old sister, Amelia, and her unnamed newborn brother. She and her seven surviving siblings are adopted by different families in the central Pennsylvania area. They grow up in seven different homes and rarely ever see each other.

So, what happened?

The Kuhlmann family, along with many other families, was forever changed by the well-known but sometimes forgotten 1918 influenza pandemic.

This year marks the 100th anniversary since the pandemic that killed an estimated 50 million people and infected one-third of the world’s population (500 million people) at the time. Those deaths included American icons such as Harold Lockwood, early period silent film actor; Phoebe Hearst, mother of businessman and communications tycoon William Randolph Hearst; as well as Horace Elgin Dodge and John Francis Dodge, co-founders of the Dodge Brothers Company — the precursor to what is presently the Dodge automobile company.

What we don’t often stop to consider is how families can be affected over time — even generations later, their family trees forever altered by diseases. The 1918 pandemic is an extreme example of what a disease can do. Yet the reality is, even one family member lost to a disease such as influenza, measles, meningitis or a host of others forever changes a family — leaving an everlasting what if.

Recently, the Vaccine Education Center (VEC) had the opportunity to talk to Terri Wood, the daughter of Pauline Kuhlmann. Ms. Wood details how the pandemic affected the lives of her mother, herself and her entire family, and puts a human face to the millions of people who died in the 1918 pandemic:

Tell us how the 1918 influenza pandemic affected your family.

It affected my family through my mother’s family. My mother’s mother, father, older sister, and a newborn baby brother died during the pandemic. The remaining seven children were adopted by seven different families. They rarely saw each other as children. When they were older, they met up and kept in touch, but it’s something my mother never really got over because she was 9 years old when they all died, and she remembered everybody.

What effect do you think this had on your mother growing up?

I think some of the effect may have been good, in fact. Her family and her kids meant everything to her, and she would’ve done anything for us. She wanted us to have everything that she didn’t have. I think, generally, all the surviving children turned out to be very funny, happy people. It’s not as though she was depressed by it, but I think it was always there for her even if she was happy or laughing. You could see it in all their faces. They had regrets about all the years they were forced to be apart. It stole time (from them).

I grew up hearing this story, but when you’re a child, it doesn’t really hit home. I have newspaper clippings from when it happened. For a long time, I didn’t want to read them because it was so sad. But when I sat down and really read them word-for-word, I learned even more. For example, I always knew my mother’s deceased brother was younger, but I didn’t realize he was a newborn until I read the article.

I think it was something that was so much a part of them, they didn’t want to mourn it. It’s not something they talked about that freely. I got a lot of information from the newspaper articles, more so than from my mother talking about it.

Do you think about how the 1918 pandemic affected your life?

For me, personally, family has been incredibly important to me. I have three children that are grown, and I have seven grandchildren. I’m very family oriented.

I have the original portrait of my mother’s mother and father. I’ve always had that hanging in my house in a prominent place. That was one piece of her family that was tangible — that I could look at, and there’s always a little sadness that’s with me for what my mother went through. It’s also given me strength, that if my mother could get through her parents dying, her siblings dying, and being adopted and split up from her family, then I can always get through what was going on in my life.

How has this history shaped your views on influenza?

Well, I faithfully get my flu shot every year. I worry when my grandchildren are sick with anything. My one grandson, who is now 10 years old, was in the hospital for dehydration when he was less than a year old with the flu. So, it’s a worry that’s always with you.

We had the newspaper articles at a family reunion several years ago. And although my kids knew the story, it wasn’t really until they read them at the reunion that they understood it. My youngest son, even recently, said that he didn’t understand how huge the pandemic was and how many people died.

How has this history shaped your views on vaccination?

Parents don’t have a fear of the diseases because they never experienced measles, mumps and polio. Parents need to be reminded. These “simple” illnesses were painful, and people died. Do they really want to take a chance with their child like that?

What effect do you hope sharing this story will have?

Hopefully, people that have a doubt about vaccines will see some of these articles and understand what it’s like. I want more people to be aware of this history, and that it wasn’t a small outbreak. Other families were affected by the 1918 pandemic. Younger generations in some of these families were probably affected and don’t even realize it.

Flu Vaccines Can Save the Life of Someone You Love

Guest article by Serese Marotta, Chief Operating Officer, Families Fighting Flu

It’s that time of year again — influenza (flu) season is just around the corner and, as during other years, we don’t have any idea how severe it will be. Unlike the common cold, influenza is a serious and highly contagious disease that tends to develop quickly, especially in children, and can lead to hospitalization or death. Every year in the U.S., approximately 20,000 children under the age of 5 are hospitalized, and on average, 100 children die from infection with influenza or its complications. How do I know this? Because my healthy, 5-year-old son, Joseph, lost his life to H1N1 flu in October 2009. I have always been pro-vaccination and Joseph and his sister got their annual flu vaccinations in September 2009, but H1N1 wasn’t in the vaccine that year. Sadly, the H1N1 vaccine didn’t become available in our community until two weeks after Joseph’s death.

Joseph’s story

Joseph’s story began innocently enough. He was attending kindergarten in the fall of 2009 and threw up on the school bus. Later that day, Joseph continued to throw up and became increasingly lethargic. Finally, we called our pediatrician who suggested we take Joseph to the local urgent care. Upon arrival, they found Joseph’s blood oxygen level to be very low and immediately transported him to the local children’s hospital. The rapid flu test came back negative and Joseph was eventually diagnosed with pneumonia.

Several days into his hospital stay, the doctors informed us that Joseph’s culture was growing influenza, which was likely H1N1, but not to worry — it was “just the flu” and they’d start him on antiviral medications. Joseph’s condition over the next several days was relatively stable. Various specialists came and went; all of Joseph’s tests appeared normal and we were even discussing his discharge with the doctors. All of that changed on the ninth day of our hospital stay. Joseph’s blood pressure suddenly plummeted, and we were sent back to the ICU. The doctors couldn’t really figure out what was causing Joseph’s low blood pressure, but they didn’t seem overly alarmed. More testing went on throughout the night, while I tried to distract Joseph with cartoons and discussions about his Halloween costume.

The doctor came to me early on the morning of Oct. 18 to say she wanted to put Joseph on a ventilator because his heart and respiration rates were so high and his little body needed a rest. The doctor emphasized it was not a big deal, but Joseph would be unconscious while on the ventilator. I calmly called my husband, who was at home with our young daughter, and asked him to come to the hospital. Minutes later, while I was standing next to Joseph’s bed, he suddenly coded. The next scene was like something on a TV show — doctors and nurses rushing into Joseph’s room. I backed into the hallway so they could do their job, but honestly, I had no idea what was happening. As the minutes ticked away, I began to realize that something was seriously wrong. I continued to wait outside Joseph’s hospital room and finally, the attending doctor came to me, sobbing, and asked me to follow her into Joseph’s room because she needed me to talk to him. Looking back, I think she thought if modern medicine couldn’t save this child, perhaps the sound of his mother’s voice could. I entered Joseph’s room and held his hand as the doctors and nurses continued to work on him. Finally, the doctor turned to me and said “I’m so sorry.” My precious son lost his life to influenza that day, and my life was irrevocably changed as a result.

My story is not unique. I have met many parents who’ve lost a child to the flu or had a child suffer serious medical complications as a result of the flu. I want parents to understand how critically important it is for all children and their families to get their flu vaccinations each and every year. The flu vaccine is the best protection we have in our fight against influenza. The Centers for Disease Control and Prevention (CDC) recommends annual flu vaccination for everyone 6 months of age and older. I also want people to understand that getting an annual flu vaccination not only protects you and your family, but it also helps protect others in your community by limiting the potential for an outbreak.

Families Fighting Flu

As a result of my loss, I became aware of an organization of others who have also had their lives forever changed by influenza. Families Fighting Flu (FFF) is a national, non-profit organization comprised of families whose children have suffered serious medical complications or died from influenza, as well as other advocates and healthcare professionals committed to flu prevention. I have since become the Chief Operating Officer at FFF. Together, every day in honor of our children, we work to increase awareness about the seriousness of influenza in the hope that no other family has to endure the devastating effects of this serious disease. Every year, FFF focuses on educational outreach using various platforms to inform others about the dangers of the flu and to advocate for annual flu vaccinations. Our mission is to reduce the number of hospitalizations and deaths due to flu, and our vision is that no child or family member is lost to this vaccine-preventable disease.

To learn more about our organization, please visit familiesfightingflu.org. On our website, we offer educational resources related to flu prevention, facts vs. myths, our families’ stories, and a flu vaccine locator so you can find a provider offering influenza vaccine near you. Our ongoing educational campaign called Stay in the Game™ aims to keep everyone healthy through annual flu vaccinations so that no one misses out on school, work or recreational activities. Make getting your annual flu vaccinations a fun activity for the entire family by going together and then celebrating with a special event like going out to your favorite restaurant or the movies. Together, we can team up and make a difference in the fight against influenza!

Editor’s note: We would like to thank guest author, Serese Marotta, for sharing her family’s story about how influenza affected them. Her son Joseph’s story was recently highlighted in an NBC Nightly News story, which can be viewed here. For additional information about influenza, visit the VEC’s website.

Marcelina’s story

Angelina Sigala lost her sister, Marcelina Mendoza, in February 2015 to complications from influenza. She shared her story with the vaccine advocacy organization, Shot by Shot, and recently took part in an interview with the Vaccine Education Center at Children’s Hospital of Philadelphia. The following has been edited for length and clarity.

Can you give a brief account of Marcelina’s story?

When I visited my sister, I knew something was wrong. I knew she was sick. Then, one day, I got a phone call that my sister had stopped breathing and was put into a [medical] coma. I drove for what felt like days to the hospital. When I got to her room, I saw the most horrific sight a person could ever visualize. My sister had several IV bags hanging by her and was on a breathing machine. She was bloated, like a balloon, and her coloring was bad. I started to panic. I couldn’t believe this was happening. My sister was like the glue that held our family together when my dad passed away a few years earlier.

We later found out that my sister had undiagnosed leukemia. The influenza infection caused her lungs to fill with fluid and her kidneys to fail. My sister died two weeks before my wedding. She never even got to see my dress.

Prior to your sister’s illness, what did you think about when you heard someone “had the flu?”

I don’t think my understanding was realistic. I had heard that it could be bad, but I really just thought you would see the doctor and then go home and rest. I really didn’t know how bad it could be or that it could kill someone.

What effects has Marcelina’s death had on your family?

My sister had two children. One of them has autism. When my sister died, my mom had to take over their care. The kids still miss her and ask about her. The one with autism doesn’t understand where she is and that she’s not coming back. As a family, we have had to help my mom the best we can. Financially, it has been a burden. Family members have had to rearrange their schedules, alter their work responsibilities and even move homes to help my mom. Emotionally, it has been really difficult for each of us, especially watching my sister’s children try to adjust.

What effect has Marcelina’s illness had on how you approach health?

I really pay attention to health matters now because I realize without your heath, you can’t take care of anyone else. I want to push people to get a flu shot before they get sick. People need to be educated and hear my sister’s story. I don’t want this to ever happen to another family. It’s a nightmare. Every day we have to deal with it, and so do her children.

Is there anything during your advocacy efforts since Marcelina’s death that has surprised you?

As a sister, when Marcelina died, I didn’t know how to express my anger and sadness or how to tell her story. I knew I had to do something. I still want to give more, like help people not only with the story, but also with getting medical care and being able to cover their medical expenses. I know there are families out there that cannot afford healthcare. Sometimes I feel overwhelmed because I wish I could help those people more.

This is obviously a tragedy for your family. Tell us why you think it’s so important to speak out?

It has affected 100 percent of my life. It was hard. I lost a sister. My mother lost a daughter. Her kids lost a mother. The flu affects millions of people every year. Families go through this every year. The stories need to be told. It’s a story that will touch your whole life. When they posted my story on Shot by Shot, it reached thousands of people in hours. I know it’s hard for people to read our stories. I still cry reading them. But people need to see real-life situations. They need to not just hear it or read it; they need to see it. We want to share Marcelina’s story with as many people as we can. It’s something no one understands unless they go through it.

Marcelina may not be here physically, but her legacy lives through me. If I can save one person, that’s enough. If I can get one person to save their health, that’s enough. If getting that flu shot helps one individual or saves one person, it is worth it.

Not just the flu — one family’s story

Jennifer Pool Miller and her family experienced the devastation of influenza firsthand. In 2012, the Millers' youngest daughter, Caroline, spent nearly three weeks in the intensive care unit battling complications from influenza. Several doctors even told the mother of two there was nothing more that could be done for 5-year-old Caroline. Luckily, Caroline survived, and the Millers were spared a fate that some families each year are not.

We recently spoke to Jennifer about her family’s experience and what she hopes people can learn from it. 

Tell us a little about your family and the time leading up to Caroline’s illness.

We’re a family of four. My husband, Christopher, and I have two daughters; Katie is 13 and Caroline is 9. At the time of her injury, Caroline was 5 ½ and Katie was 9. Up until the event, they were both extremely healthy. Neither kid had ever been on an antibiotic. That’s the one thing I tell people. Caroline has mild asthma, and I think many times people will say ‘Oh, she’s more susceptible because of the mild asthma.’ While that’s true, I can’t emphasize enough that this happens to healthy children. And they were extremely healthy going into that flu season. When Caroline was 5 ½, she swam four times a week. She took gymnastics lessons. She’s a very good athlete, and just a very active child. Typically, she is constantly moving. Her nickname in kindergarten was “Zoom” because she was in constant motion. She would zoom everywhere. She still does in fact.

Can you give us a brief overview of what happened to Caroline?

When I started to notice symptoms, it was because she was normally such a high-energy kid. So when we saw her tired and having a cough, which rang a bell. At that point she didn’t have a fever. She was still doing somersaults off the couch, but I knew she was getting a cold. By evening, I could tell things had gotten pretty bad. Her breathing became more labored. By 12:30 or 1 a.m., her breathing became really impaired. I would liken it to a dog panting — that really fast, labored breathing — and it just stayed that way. Our pediatrician suggested going to the emergency room. They diagnosed her with the flu and put her on oxygen. By the next morning, they suggested she go to a children’s hospital in our area because they found she had pneumonia and influenza A. I started getting our things together, and they said, ‘No, she’ll have to be taken by ambulance.’ I had no idea how severe it was. When they said she had the flu I was thinking, ‘OK, everybody gets the flu.’ I had no idea what lay ahead of us, and I had no idea how many people died of the flu each year.

When did you begin to realize the severity of Caroline’s illness and the situation?

At the second hospital, she went into acute respiratory distress and was unable to breathe on her own. They had to intubate her. Late that night, the chief of pediatrics pretty much told us there was nothing else they could do for her there. By that time, you’d think you’d pick up on the signals (as a parent), but it’s all happening so quickly your brain doesn’t have time to comprehend it all. That was the worst thing I ever heard in my life — and I heard it twice at two different hospitals. I’m thinking, we’re in the United States in a populated area at two very good hospitals, how can we be in this situation?

Caroline needed assistance breathing using a machine called an oscillating ventilator, which was only available at two larger children’s hospitals in the area. She was airlifted to Children’s Hospital of Philadelphia (CHOP) in the middle of the night. That is a very strange thing. Children at that age, 5 years old, you (as a parent) don’t really go anywhere without them. Even at a birthday party you’re right there with them. So when they said they had to airlift her, you’re thinking, ‘Oh my God, this is crazy.’ But it got even crazier when they told me and my husband that neither of us could go. The reason being that everybody on that helicopter — doctors, nurses, respiratory therapists all from CHOP — needed a seat. That’s an odd moment, because up until that moment, for every second of that child’s life you’re everything for that child. You’re the most important person to them in the whole world. You’re the one that cares for them and keeps them alive and keeps them safe. And now, the expertise and care of strangers is the most important relationship to your child — her life depends on the expertise and care of strangers.

There were several days at CHOP when she was the most sick, but it’s a different feeling. You’re dialed into a care plan, and there’s residents asking personal questions about Caroline, so they can connect with her. One thing I mentioned was her high-energy characteristic, and that she can even be a “pain in the neck” sometimes, and (the doctor) said that fighter instinct, that “pain-in the-neck” attitude is the sort of personality they like to hear about because that’s exactly the type of person that might fight their way back from this. As soon as she was placed on the oscillating ventilator, that helped tremendously. They gave Caroline every medication possible. She was in a drug-induced coma. Then on Christmas Eve, we started to see positive progression. On Dec. 30, in the middle of the night, she was removed from the drug-induced coma, and they said we could go to recovery. She spent New Year’s Eve at CHOP, and we left on Jan. 2.

What was the hardest part about this experience?

I think it’s the lack of control. Unlike any other relationship you have, especially with a young child, you’re completely in control of every facet of every hour of their day, including their safety and well-being. So it’s a very odd position to be in when you have no control over their getting better. It’s a helpless waiting game, and you have basically put your child’s life into strangers’ hands. It’s so hard to even articulate. It’s like nothing I ever experienced nor have experienced since. And what I realize is that our positive outcome was a lot of luck and timing — being in the right place at the right time with the right people. I’ve learned so much about so many other families that have not had the outcome we had.

For Caroline, it’s a blessing and a curse because she has no recollection of it. I remember talking to a doctor who said she’ll probably remember very little because the drugs are kind of “memory erasers.” I remember joking that I wanted one of those IVs too. It’s really hard to think about sometimes, but we had a happy ending, so it’s a good thing.

Did Caroline receive a seasonal influenza vaccine that year?

No she did not, and without a doubt she should’ve been immunized. That’s the single most important thing to take away from this. She had been immunized every other year prior to that. I fully admit we got busy with school and sports, and I remember thinking in November that we still needed to get her flu shot. It hadn’t been available when school started, but the shot had become available in October, which was a little crazy for us. And I remember thinking ‘Once they’re off school, they’ll get it.’ It’s the worst decision, by far, that I have ever made in my life. And, it’s the worst parenting decision I have ever made, and it’s something I have to live with for the rest of my life. It doesn’t matter what anybody says, ’Oh, don’t blame yourself.’ It doesn’t matter, you blame yourself. You’re the parent. You’re in charge of their health and well-being. I mean, she’s not going to get up and drive herself to the doctor’s office and get a flu shot by herself, you know? I was the one in charge of that, and I didn’t make it happen. I definitely don’t think I knew any better. I knew it was important for her to get. I had no idea how important it is to get it prior to the flu season.

When we were at CHOP, living there 24 hours a day for several days, every new group of doctors or nurses that would come in would ask, ‘Is she immunized?’ They must have asked me seven times a day — and every time was like a stab in the stomach. If nothing else, that memory drives me to tell anybody that will listen to go ahead and get their kids immunized. There’s nothing worse than having to say, ‘No, I didn’t do that.’ I remember thinking, ‘If she dies from this, this was a vaccine-preventable disease. We’re not in a third-world country. It’s available to us.’ Now, I can’t even imagine not getting a flu shot. But I know other parents, like me four-and-a-half years ago actually, who don’t think it’s a big deal not to go get it right away. 

Looking back on the ordeal, does any single memory or event stick out to you?

I had absolutely no idea that healthy children die from this. I had no idea thousands of people die from influenza each year, and I grew up in a medical family. My dad was a pharmacist. My mom was a nurse. Aunts and uncles are nurses and doctors. It’s not that I didn’t know immunizations are important, but I didn’t realize the importance of the timing.

Every year since this happened, we go as a family to get flu shots. My husband and I go first, and the kids come with us, then we take them to their pediatrician appointment. It is literally the most important thing we do in the fall. My husband has a crazy work schedule, but there’s not one ounce of pushback. After we all finish, we go do something fun because nobody wants to get a shot. I hear that a lot from parents. I have friends and family members who say, ‘Well, I don’t think I’m going to do it because (my kids) hate to get shots.’ I understand where they’re coming from because they didn’t experience what I experienced. But now I think the fear or anxiety of your child about the shot doesn’t even hold a candle to what can happen if they get the flu. They don’t even correlate. I try to stress that to everybody. It takes less than 60 seconds to get that shot, and yet it can do so much good. It’s not such a big deal now, because my kids are older, but that first year after it happened even Caroline was like, ‘Oh, I don’t want to get the flu shot.’ Her older sister and I were like, ‘Are you kidding me?’ Now, we try to make it a fun thing. We go out to lunch after, or we go hiking or ice-skating or to the park. Sometimes you have to sell the sizzle of it. That’s parenting in general, bartering and bribing. But this is by far so worth the extra effort.

What did you and your family take away from this experience?

I get asked that a lot. The one thing is to trust your instincts as a parent. I fully admit that morning when she started to show signs and symptoms, I knew something was different because that was so out of character. But that’s the problem with the flu because it looks like any other virus. I always tell parents to trust their instincts because they’re there for a reason, and then act quickly — less than 12 hours later Caroline was breathing completely irregularly.

Why do you agree to interviews like this, and reliving what must be a very painful time in your life?

I have family members say that. It’s my responsibility. I don’t think I’ve expressed it this way before, but when you’re there and your child is literally dying, whatever your religion or your belief system is, you’re calling on the universe to help your child. You’re making a deal with the devil, if need be, to save your child’s life. I sat there and I thought, ‘If we get out of here, no matter what, I’m going to find out every bit of information about this and scream it from the rooftops.’ I really do believe in that adage of ‘you know better, you do better’ because I knew what flu was, and I knew there was a vaccine, and I had done it previous years; but I had no idea you could be flatlined from this. I thought, ‘If I don’t know this, there’s millions of people that don’t know this.’ So, I feel it’s my responsibility to educate as many people as I can about the importance of vaccination.

When did you first hear about Families Fighting Flu?

It was when we were at CHOP. I was sitting in Caroline’s room, which is what we did for hours and hours and hours, and I was on the internet, sitting there in disbelief that this is happening, seeing my daughter laying there as a response to the flu, and I thought, ‘How rare is this?’ When I started searching the internet, Families Fighting Flu came up. I remember reading through the website, and it’s extremely bittersweet because on one level it was amazing to me that this is something real and apparently more common than I ever had any idea, but also that it was started by families who tragically lost their children to influenza. I remember going through the website and reading family stories and thinking, ‘Once I’m on the other side of this, whether my child comes home with me or not, I’m absolutely reaching out to this group of people.’

Can you describe what the group does?

We try to let people know it’s not “just the flu.” It’s a serious disease. We want to decrease the number of children who end up in the hospital or die from the flu and increase the number of people who get a flu vaccine each year. I like that it’s a not for profit. I appreciate that families created the organization in honor of their children. Once I started working with them, I realized these people have full-time jobs, big careers, and other surviving children. They’re going about their lives, and they’ve taken on this tremendous responsibility to keep this organization afloat. They’re the most selfless group of people I’ve ever met — they’re very much like CHOP that way. And they’ll say, ‘Well, of course I’m doing this,’ and I’m thinking, ‘Yes, but this is extremely painful.’ Flu season is a very difficult time for me. I can only imagine what it’s like for these people.

I remember being in the hospital before we got to CHOP, and my husband was trying to digest what was happening and he said to the doctor, ‘Tell me, how serious is this?’ The doctor turned to him and said, ‘Sir, over 25,000 people die from the flu each year.’ And I remember thinking, ‘Oh my God, I had no idea.’ I never heard that statistic. It’s crazy considering that it’s vaccine-preventable. So I think the thing is to not just get your kids and yourself vaccinated, but babysitters, grandparents. You see certain hospitals making everyone that works there get it. I get it that there’s something about people not liking being told they have to do something. That’s human nature, but if you look at it a little further, and look at these stories from Families Fighting Flu, you’ll realize these are not crazy people. No one asked for this. We were all going about our lives just fine and happy with the status quo. But it’s that whole mentality that, ‘It could never happen to me. That won’t be my kid.’ You’re kidding yourself if you think it couldn’t happen to you or your family.

What difference do you feel you have made?

You can never really see it on a larger scale, but even conversations like this. You have no idea how much it does my heart good to hear about a “crazy dad” who is making everyone around their kids get a flu shot, because it means there’s one more person that is of the same mindset. So rather than look at it like a big scale thing, I try to look at it like if I can have one more conversation or impress upon one more person the importance of influenza vaccination, it’s a domino effect. My husband’s office never did flu shots. Now, not four years later, they do a flu shot day. The more we can share Caroline’s story, the more likely that we may prevent one more child from getting sick — one more family from spending Christmas in a hospital hoping their child survives the day.

Find out more

Read more about the Miller family’s experience, read about other families’ experiences, and find out how you can help Families Fighting Flu.

Watch Jennifer recount her story in 2021 as part of the “Perspectives on COVID-19 Vaccine for Kids” video series.

Editor’s note: The Miller Family was so pleased with their experience at CHOP, they began the Caroline Miller Endowed Fund for Nursing Education and the Katie and Caroline “P.I.C. You” Program. The endowed fund allows nurses to participate in ongoing continuing education programs. The “P.I.C. You” Program supports small awards that recognize outstanding performance and patient care by CHOP PICU nurses. Learn more or donate here.

Elizabeth’s story

Vira Cover misses her daughter, Elizabeth, who died from influenza when she was only 23 months old. Vira shares her daughter's story because she does not want other parents to experience the pain she feels.

Elizabeth died during a particularly severe influenza season for children, 2003-04, during which 153 families became members of a group they would give anything to be excluded from. Vira realizes that unfortunately each year about 100 families suffer the pain she feels. So she works tirelessly to make sure people know there is a safe vaccine that their children should receive.

Read about Vera's experience in the Immunization Action Coalition's (IAC) "Unprotected People" series.

To read other "Unprotected People Reports," visit IAC's webpage.

Remembering a brave boy

By: Freda R. Savana
The Intelligencer, April 4, 2010

(Reprinted with permission of the author, Freda Savana)

Timmy Raymond was a healthy, active boy when the H1N1 virus, fueled by another infection, cut short his young life.

The Christmas tree is still up in the Raymonds' spacious Warrington home. The family had been waiting for Timmy to come home before they took it down. Now, no one really has the strength to do it.

It’s been one month since the quiet, 13-year-old boy died; Bucks County’s only reported death from swine flu. He fought the vicious illness with his usual determination and courage for four months. He survived unfathomable procedures, many used for the first time in medical history, and countless attempts to restore his weakened body. The final effort, a lung transplant, made excruciatingly more complicated because his lungs had dissolved into “mush” and attached to his chest cavity, proved more than he could withstand. Although he lived through the 12-hour surgery, he died a short time later.

“What we did for Tim stretched the bounds of anything ever done at Children’s Hospital of Philadelphia. Many things were done for the first time in the world,” said Dr. Todd Kilbaugh, assistant professor of anesthesia and critical care at CHOP. His case will be included in medical journals and what was learned will benefit others, said the doctor. “Working with our team to try and save Tim’s life was one of the most amazing things I’ve ever been involved with.”

Timmy’s parents, Tina and John, reflect on every detail of their youngest son’s heroic battle – a terrifying and confusing nightmare as he went from the picture of health to life support in 48 hours.

From the Friday before Halloween when he came home from school saying he didn’t feel well, to his last hours, the heart wrenching journey has left the family in awe of their child’s strength, thankful for their unwavering faith and forever grateful to their community.

It began with a fever

The whole family had been sick that week, recalled Tina. Kevin, Timmy’s 15-year-old brother, had flu symptoms, as did she and her husband. As it turned out, all had contracted H1N1, coming in contact with the virus before the vaccine arrived in Bucks. Their eldest son, Brian Harding, 26, escaped the dreaded virus.

“When Timmy said he had a fever after school Friday, it was nothing alarming. I talked to a friend whose son had just had it, and she said, ‘Don’t worry, he’ll be fine.’ Little did I know.”

On Friday night, Tina gave her son a bagel, some soup and Motrin and he went to bed early. By Saturday morning “he looked awful” and said he’d been vomiting all night. He wasn’t the kind of kid to wake his parents though. He had just toughed it out.

She set him up with some ginger ale, a cell phone and the remote and headed out to Kevin’s football game. John was upstairs in bed with the flu, too. When Tina got home, Timmy was already in bed. “He wasn’t that kind of kid,” to head to bed early on a Saturday, said Tina. “I went in and told him to please get me up if he needed me. I can’t imagine how guilty I would feel if I hadn’t said that.”

Sunday morning the world shifted. “Kevin came into my room, he practically ripped the door off, saying Timmy can’t breathe.” Downstairs, Tina found her son “breathing with his whole belly,” she said, taking deep breaths, her arms rising from her sides to explain.

By late morning, the Unami 7th grader was on life support at CHOP, airlifted from Doylestown Hospital. One lung was full of fluid; the other was filling up. Timmy was struggling mightily for every breath. He never left the hospital; he never came off the ECMO (Extra Corporeal Membrane Oxygenation) machine, setting a world record for time on the apparatus that provides oxygenation until lung function has sufficiently recovered. Timmy lived with large tubes chiseled into his neck, giving him the oxygen his lungs could not.

For several days, many of the finest minds in children’s medicine could not understand why Timmy’s condition worsened so precipitously. Why were his young lungs so ravished, so quickly? Why did he keep getting sicker and sicker?

“They kept asking me if he was sick, if anything was wrong with him before and I kept saying no, he just had 15 tackles in his last football game,” said Tina. Then, tests revealed what no one had known, Timmy had MRSA (methicillin-resistant staphylococcus aureus), a bacterial infection highly resistant to antibiotics.

“It was a lethal combination,” said Kilbaugh, of the MRSA fueling the virulent swine flu virus. The infection, acting like igniter fluid, joined forces with the H1N1 virus and carted it through his blood stream.

Tina remembers that Timmy had scraped his ankle on the deck of the family’s pool last summer and the cut refused to heal for some time. She kept attacking it with Neosporin and scolding him for not keeping a bandage on it. The busy summer went on and eventually the cut cleared up.

As the fall approached, the country was preparing a massive inoculation campaign. Across the nation and throughout the region, preparations were underway to help protect people from the flu so many feared. Between November and January, over 70,000 people were vaccinated in Bucks County, said Roxann Bentz, the epidemiology nurse coordinator for the county’s health department. There had already been 2,929 confirmed cases in the state by October of last year, according to the Pennsylvania Department of Health.

A special child

Members of the Raymond family are active in youth sports. John and Tina coach and both boys excelled athletically, playing baseball, football and basketball. Timmy’s infection, called community-associated MRSA, is easily transmitted through high contact sports and his family assumed he contracted it playing one of the games he so enjoyed. The bacteria finds its way into the body through the slightest opening. It can go undetected, lying dormant or appear in a wound.

A calm, hardworking boy, who had just started at Unami Middle School, Timmy was coming into his own as a football player. Mike Clark, one of his coaches, and the father of Timmy’s close friend Ben, described the “notoriously quiet, smart kid” as “always trying his best, never quitting even when things weren’t going his way.” Unlike many young boys, Timmy was a good listener, said Clark. “He wouldn’t jump to conclusions. He never lost his enthusiasm.”

Liz Clark , Mike’s wife, called Timmy “the king of the one-liners,” making her laugh with his quick wit. “He was a super kid and a great friend to my son.” She said Timmy’s death has been very hard on Ben. “He has days where he misses him so much.”

Other children will benefit from the example Timmy set, said Mike Clark. “They watched how hard he worked and how much he grew. He just enjoyed life. We’re really going to miss him.”

Another of Timmy’s coaches who knew him since kindergarten said simply, “he was one of the nicest kids you could ever meet.”

Besides being a fine athlete, Timmy was a straight-A student who played the piano and saxophone. “He was very, very versatile,” said Tina. But rather than boasting of his accomplishments, he was “a humble, quiet kid with tons of friends.” His room at CHOP was “wallpapered with cards.”

Two thousand people attended Timmy’s memorial service, filling Unami’s gym, cafeteria and auditorium.

A community shows its support

In the corner of the Raymond’s dining room there’s an enormous stack of plastic food storage containers. It’s a visible sign of the countless meals friends and strangers alike have brought to help the family over the long winter. “I haven’t made dinner for five months,” said Tina, as the doorbell rang and a woman she’d never met was dropping off a large cardboard box at the front door with the evening meal.

For the Raymonds, the outpouring of support from the community has been nothing less than astounding. Children as young as five shoveled snow and brought the money they earned to the family; others took up a collection the day the local water ice shop opened and still more donated blood. Friends made photo boards of Timmy’s life and hundreds and hundreds of people sent notes and cards expressing their love and sympathy. “I open my mailbox every day holding a box of tissues,” said Tina.

Both John and Tina have heartfelt praise too for the staff at CHOP. Using words like angels and compassionate friends, the couple said the care Timmy received at the hospital was unparalleled. “Through it all,” said John, “the one thing we never questioned was the health care at CHOP. They treated Timmy like he was one of their own.” “They will be in my heart forever,” Tina said.

Faith and saying goodbye

John and Tina share a deep belief in God. That faith, they explained, has sustained them during the loss of their beloved son. A member of the Church of Jesus Christ of Latter Day Saints in Doylestown, Tina said her faith and church have been a “huge” benefit. “I don’t know how people survive something like this without a relationship with God.”

There is comfort, said John, in knowing God has a plan and in knowing everything possible was done to save his son. “Waiting for the lungs was the hardest part,” he said. But once an acceptable donor was found and the decision to try a transplant was made, there was closure. “We knew we had tried everything and would never have to ask, ‘what if’?”

That Timmy did not survive is, of course, devastating to all who knew and loved him. But, his father said, he would have been in and out of the hospital the rest of his life, his quality of life greatly compromised, a spectator to the things he loved. Even with a successful transplant, which is extremely rare, Timmy’s life expectancy would have only been three to five years, John said.

Each night he goes into his son’s bedroom and says goodnight – remembering that Timmy would always go into his parents’ room and give them a goodnight hug and say ‘I love you.’

“You could lose yourself wondering why?” he said. “But God has a plan for all of us and one day you know. Timmy just found out sooner.”

Learn more about influenza and the influenza vaccine.