“When we become parents, we dream of watching our children grow up. Seeing them learn to walk, say their first word, learn to ride a bike, go to school, get married, have kids of their own. As parents, most of us don’t entertain the notion that we may outlive our children. But it happens. And it happened to me.
My son, Joseph, was our second child, and he and his older sister were close in age as well as best friends. After Joseph was born, I went back to work on a part-time schedule so I could spend more time with my kids. Joseph’s favorite things included books, dinosaurs, puzzles, cars, and board games. He was smart and joyful, but he could also be stubborn. He was mommy’s little boy, and I adored him.
Joseph was a healthy little boy. He would get sick occasionally with a little cold, but that was it. When he was in preschool, he used to love trying to do his sister’s homework (who was in first grade at the time). I remember him sitting at the kitchen table asking if he could ‘help’ his big sister with her school work. ‘But, Mommy, I want to help!’ he’d say rather loudly. He would become so adamant I’d have to make a copy of her worksheets so he could participate.
In preschool, you could always tell which picture was his because he was so careful about coloring between the lines. He was the same way with his bedroom – all of his things were put in order, including his cars, which he’d line up around the edge of his dresser. He was very particular, which seemed different from some of his peers. But that was our Joseph. We’d often say he was like a little old man inside of a child’s body.
He started kindergarten in the fall of 2009, and he was so excited! He loved to ride the school bus, and I have a vivid memory of him smiling and waving happily at me as the school bus drove away. One day in early October 2009, my husband and I got a call from the school’s transportation office saying Joseph had thrown up on the school bus. No biggie, right? Especially as our second child, we weren’t overly concerned. My husband went to pick him up and bring him home. Throughout the remainder of that day, Joseph continued to vomit and became increasingly lethargic. At one point, he was sleeping so soundly on the couch my husband had trouble waking him up. Something didn’t seem right so we called the pediatrician, who advised us to take Joseph to the local urgent care because it was after-hours.
At the urgent care, the nurse remarked, ‘I bet that kid has the flu.’ They did a rapid test for flu, which came back negative. They also checked his blood oxygen level, and it was low, so they immediately transported Joseph to the local children’s hospital. That night, he was diagnosed with pneumonia and admitted to the pediatric intensive care unit (PICU). He was immediately started on several kinds of antibiotics to treat the pneumonia as well as steroids and oxygen to help him breathe. They gave Joseph a different test for flu, and that one came back negative, too. The next day brought additional tests, but finally, they were able to take Joseph off oxygen and the doctor announced that because he was breathing unassisted, Joseph could be downgraded from the PICU to the regular pediatric floor.
At this point, my husband and I were relatively calm because we felt Joseph was receiving the best care, and it was only a matter of time before we could go home. I distinctly remember watching out the window in Joseph’s room as a helicopter landed with what appeared to be a critically ill child. I watched as they hurriedly pushed the gurney down the sidewalk into the hospital, and I remember thinking to myself, ‘Gosh, I’m so glad that’s not my child.’ Just briefly considering what that child’s parents must have been going through made me uneasy enough that I quickly pushed the thought from my mind.
During his hospital stay, Joseph saw a continuing rotation of specialists. There were doctors coming in constantly to check his heart, his kidneys, his lungs, etc. There was a steady stream of nurses, too, as they came in to administer his medication and check his vitals. I was doing my best to keep track of what was going on. In fact, I had my own little chart, and every time a nurse came in to give Joseph medication I would ask her to tell me what it was so I could mark it down. During the first few days of his stay, Joseph still had a fever and was throwing up intermittently. They were treating his fever and nausea with medication, too. A few days after being admitted, the doctor indicated Joseph’s culture was growing influenza (flu), which was strange, but I was told ‘not to worry’ because even if it was the H1N1 pandemic flu strain going around, it was ‘just the flu’ and they’d start treating him for that, too. The doctors informed me Joseph’s samples would be sent to the Centers for Disease Control and Prevention (CDC) to get a positive diagnosis on which type of flu Joseph had. Days later, we had a positive diagnosis: Joseph had H1N1 pandemic flu.
The next several days passed generally without incident, and Joseph’s condition seemed relatively stable. His appetite still hadn’t returned, and he was still hooked up to an IV, but he was resting comfortably and watching cartoons. We all wanted to go home and we had even begun discussing Joseph’s discharge with the hospital staff. Joseph had developed some belly pain mid-week and the doctors did some more tests to rule out gastritis and pancreatitis. By all accounts, it looked like Joseph was getting better. Because the H1N1 pandemic was occurring, my husband and I were taking shifts at the hospital so one of us could stay with Joseph and the other could be home with our then seven-year-old daughter.
Nine days into Joseph’s hospital stay, the day started out normally. I had stayed the night at the hospital, and I was trying to get Joseph to eat some pancakes as he sat on my lap and watched TV. My husband came around lunchtime to relieve me, and I went home with our daughter to take a quick nap. We left home later that evening, and I stopped at a store to buy a new book so I had something to do as I sat at the hospital.
When we arrived at the hospital that evening, my husband called to tell me to meet him upstairs near Joseph’s room. Prior to that, we had handed off our young daughter in the hospital lobby, but something was happening in Joseph’s room and he needed me to bring our daughter and come up. I remember grabbing a mask for my daughter and jumping on the elevator. When we got out, my husband was waving to us from the hallway near Joseph’s room.
As I approached, I saw two nurses somewhat frantically going in and out of Joseph’s room. I stood in the doorway and asked what was going on. One of them explained Joseph’s blood pressure had dropped so low they couldn’t get a reading. He was still lucid but looked a bit peaked. That was the first time my ‘mommy radar’ went off during Joseph’s entire hospital stay, and I knew something was not right. I asked the nurse where the doctor was, and she said she didn’t know. I turned to her and said, ‘You better $%#& find her now!’ Minutes later, the doctor showed up and explained to me calmly that she wasn’t quite sure what was happening with Joseph, but all his labs had been normal. I looked at her with tears in my eyes said, ‘That little boy is the only one I have, so we better figure this out quickly.’
We went with Joseph back to the PICU where the staff started running all kinds of tests. I remember Joseph whining as they tried to draw blood from his femoral artery because they couldn’t get a sample from his arm. It’s so painful to watch your child in pain, and I just wanted them to make him better. I remember the doctors asking me questions about my medical history, and they remarked several times his tests were looking ‘normal.’ If everything is normal, why are we here in the PICU and why can’t they ‘fix’ my son’s blood pressure? Even with all the activity in the PICU, my husband and I were relatively confident, based on our conversations with the doctors, Joseph’s condition was stable, aside from the unexplained low blood pressure. Because it was so late, my husband and I decided he would take our young daughter home and come back in the morning.
Throughout that evening, doctors and nurses came and went out of Joseph’s room. They continued to run tests and tell me they couldn’t find an explanation for his low blood pressure. At around 3 a.m., the attending physician came in and asked me a bunch of questions, stating she had consulted numerous medical textbooks and was now consulting an endocrinologist because they thought Joseph’s condition had something to do with his adrenal glands. Despite the obvious lack of explanation for his condition, there was absolutely no indication from the doctors that Joseph’s life was in danger.
Fast forward to around 6 a.m. and the attending doctor said she wanted to put Joseph on a ventilator because his blood pressure still hadn’t resolved and his heart rate and respiration rate were elevated. She wanted to give his little body a break from working so hard. Joseph was still alert, although very tired, and he kept asking me for some Gatorade. I called my husband and told him calmly to come up to the hospital because Joseph would be unconscious once he was put on the ventilator. The doctor left to go prepare things, and I was standing next to Joseph’s bed discussing Halloween costumes with him. Minutes later, I noticed the base of his throat started fluttering and his eyes rolled back in his head. The machines he was hooked up to starting going off, and suddenly, the room was filled with doctors and nurses.
I knew something was seriously wrong, but my mommy brain just kept saying, ‘They’re going to fix this.’ I waited patiently in the hall as they worked on Joseph. What seemed like several minutes later, a nurse finally approached me and said I could go back in the room. I felt relieved because I thought that meant Joseph was out of the woods. I entered Joseph’s room where they were still feverishly working on his naked little body. I COULD NOT WATCH. I backed out of the room and a nurse took me to the room next door. While I was in there, my husband came in during all of this flurry and we tried to explain what was happening. At one point, a nurse came in, held my hand, and said to me, ‘They’ve restored your son’s heartbeat, but it’s at 200 beats per minute. Your son is very, very sick.’
Shortly thereafter, the attending physician came in, and she was sobbing. I held up my hand to push her away, and through my tears, I asked her if Joseph had died. She simply said to me, ‘I need you to come in here with me.’ I followed her to Joseph’s room where a nurse was giving him chest compressions. The doctor said to me, ‘I need you to talk to your son.’ I took Joseph’s hand, and I begged him to stay with us. I listened for several minutes as they continued to push epinephrine in an attempt to save my little boy’s life. Then the doctor just turned to me and said, ‘I’m so sorry.’
After Joseph passed, we held him for a long time. I remember looking at his beautiful face and thinking, ‘He’s going to just wake up. He’s going to wake up, and we’ll go home, just like we were supposed to.’ The doctor came in to talk to us and she informed us he was the 85th child to die that year from flu. I was incredulous. ‘People don’t die from flu,’ I said. I couldn’t have been more wrong, as now I know these tragedies happen every year.
Leaving my son’s body in that hospital to go home and tell my young daughter her brother, her best friend, wasn’t coming home was the hardest thing I’ve had to do in my life. Parents should not have to bury their children under any circumstances, let alone due to a vaccine-preventable disease. As a result of our loss, shortly after Joseph’s death, we became involved with a national, non-profit organization called Families Fighting Flu whose mission is to help protect children, families, and communities against influenza. I now serve as the organization’s Chief Operating Officer, and our organization is made up of many families like mine, as well as healthcare professionals and advocates who are passionate about flu prevention, diagnosis, and treatment. Sharing my story, and other stories like mine, allows us to educate others about the seriousness of flu and the critical importance of annual flu vaccination for everyone six months and older. Our goal is to help prevent other families from experiencing what we have.
My son did not die from cancer, he did not suffer a catastrophic accident – he died from flu. Luckily, most people have not lost a loved one to flu, and because of that, you might think it’s rare. But sadly, influenza (flu) kills more Americans every year than any other vaccine-preventable disease. Every year in the U.S. flu kills upwards of 61,000 people, including over 100 children. I never dreamed my child would become a statistic, and certainly not because of the flu.
You never ‘get over’ the loss of a child, and everyone’s grief journey looks different, but it’s my hope that through our education and advocacy work at the Families Fighting Flu organization, we can make a difference and reduce flu-related hospitalizations and deaths by increasing flu vaccination rates in this country. In the U.S., less than 50 percent of adults and less than 65 percent of children receive a flu vaccine every year. We need to do better, so we can have fewer stories like mine.”
This story was submitted to Love What Matters by Serese Marotta of Syracuse, NY, Chief Operating Officer of Families Fighting Flu. You can follow her journey on Facebook. Submit your own story here and sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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