Published onParents PACK
The final week of April marks the observance of National Infant Immunization Week in the United States and World Immunization Week globally (see “News & Notes” for more information). Thanks to vaccines, the discomfort associated with vaccination is known to most, but the devastation of disease is known to few. Jennifer Pool Miller, an advocate for Families Fighting Flu is one of those who has experienced such devastation. Five years ago, her youngest daughter, Caroline, spent nearly three weeks in the intensive care unit battling complications from influenza. 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.
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.
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