After watching the special on deadly viruses on CNN Friday night, I feel compelled to share what I have learned about influenza in the last year in hopes that no one else has to face the loss of their child from the flu.
Fiona’s death from a common illness, the flu, is still hard to fathom and came as a shock to everyone, even the medical staff treating her. Fiona was one of 85 reported and lab confirmed pediatric flu deaths in the U.S. in the 2015-2016 season. Fiona and her sisters had received the flu mist in fall 2015, as recommended by her pediatrician. In fact in 2014 the flu mist was recommended over the flu shot as it was deemed more effective. About 1/3 of flu vaccines administered were of the flu mist variety, vs the flu shot. The flu mist is a live but weakened strain of the flu virus meant to stimulate the immune system. We chose it over the flu shot for the past several years as it was less painful and scary for our children to receive, and also because we heard it was more effective. But after the 2015-2016 flu season, the CDC determined that the flu mist was only 3% effective, meaning there was no protective benefit. The maker of the flu mist vaccine, AstraZeneca, disputes these statistics claiming it was 50% effective. After the CDC’s report, the flu mist was pulled off the market in the U.S. AstraZeneca still sells flu mist to other countries around the world. While even the flu shot is not 100% effective, it’s usually about 50-60% effective, and if you do happen to become infected with the flu, symptoms will be less severe. Considering 90% of children who die from the flu were not vaccinated, the importance of getting a flu shot is paramount. If only we had known the flu mist meant zero protection.
Even so, we never though that the flu could lead to death in a healthy child. I would have assumed elderly people were most likely to die from such a common illness, as a complication of an already weakened system. To be sure, most people who die from the flu are either elderly or under the age of 5, and health-compromised in other ways that leave them susceptible to a viral invasion. H1N1 is the same strain of flu responsible for the 1918-1920 flu pandemic that infected 500 million people and caused 50-100 million deaths around the world. About 3-5% of the world’s population died, as the flu spread rapidly in soldiers who were in close quarters and travelled around the world. People from the Arctic to remote islands in the Pacific died, and it predominantly killed previously healthy young adults. Ryan’s grandfather became an orphan due to this flu, as his young mother died a month after giving birth, in January of 1919.
Our eldest daughter, Maisie, had H1N1 when she was in first grade in 2009 during the swine flu outbreak. She was very sick, with a fever of about 102-103, fatigue, and body aches that caused her to miss two weeks of school and visit the doctor several times. We were told she was fighting a virus and there was nothing we needed to do besides fluids and ibuprofen. The pediatrician even joked about her having the swine flu and he made an oink oink noise; we felt relieved that he assured us the illness was running it’s normal course and she would recover.
So when we were told Fiona’s diagnosis of H1N1, I felt a sense of relief in knowing that she had what Maisie had recovered from previously. I also felt confused because she had been vaccinated. I was not aware that healthy children die from the flu every year. Fiona had an auto immune disorder, alopecia, that could explain why her immune system was not effective at fighting off the virus. Her immune system overreacted, and led to further breakdown on the cellular level. Why her sisters did not get the flu at the same time is a mystery.
I hope that people will realize the importance of getting a flu shot every year. Poppy was diagnosed with Influenza A last week; the day after Fiona’s 1st death anniversary. Since she had the flu shot last fall, her symptoms were very mild and she has recovered. We took her to the doctor and insisted on a flu test; maybe they thought I was overreacting but once they knew our story they understood. The doctor prescribed Tamiflu, which also helped reduce the symptoms. It was still terrifying to think a potentially deadly virus was circulating in her body, and there was little we could do about it but keep her home, force her to get rest, fluids, and Tamiflu. Antibiotics don’t work against a virus. Poppy most likely got the virus from someone who was not vaccinated; I really don’t know but I would guess so.
Choosing not to vaccinate can lead to someone else’s death. You can’t predict what immune-compromised people you may come in contact with, and whose lives could be forever affected. The flu virus is highly contagious and spread through millions of tiny droplets in the air that are inhaled into the lungs. Symptoms typically start 48 hours after infection, leaving the infected individual unaware that they are sick and contagious to others for up to 2 days. Symptoms, when they start, come on fast and intense, with the first 2 or 3 days being the worst. Symptoms are muscle pain, cough, body chills, nasal congestion, fatigue, sometimes fever, headache, nausea, sore throat, and sometimes vomiting and diarrhea. Most people recover from the flu after one or two weeks. Most people who die from the flu end up dying from co-occuring bacterial infections such as pneumonia. But the virus can kill on it’s own, by attacking lung cells and spreading to other organs, leading quickly to multi-organ failure. Some people have died from the flu virus infecting the brain or heart.
New strains of the flu appear every year, as the virus evolves and mutates. The bird flu currently circulating in Asia kills about 50-60% of those infected. A flu vaccine that covers all types of flu is needed. Treatment for people infected with the flu needs further research and expertise. The hospital did not seem to take Fiona’s illness seriously as she was not monitored very closely, and they seemed surprised her illness led to her death. She was given Tamiflu, but only after we’d been at the hospital for more than 4 hours. It didn’t have much of a chance to start working. We wish we had taken Fiona to the doctor the day before, when she had first started exhibiting symptoms. We will carry that guilt for the rest of our lives. We just didn’t know; we thought she “just had the flu” and it would work itself out as had happened other times our kids were sick. When she was in the hospital, we were fairly confident she would be going home either that afternoon or the next day. We had no idea what the virus was doing inside her body; it’s invisible, deadly work was unknown to everyone. The only way to have known her lungs were being damaged would have been to take a biopsy of the tissue. I still do not know in what other ways she could have been treated that would have prevented her death. I just know we took her to the hospital because we needed help, and what we were doing wasn’t working. We looked to those we thought were experts to provide us with help. We still aren’t sure what exactly went wrong and why she succumbed to the virus.
Every year I will worry about the flu; will one of my children get sick every spring? Will we have to take them out-of-state to a large children’s hospital so they can receive the best treatment from experienced specialists? How will we know at what point to leave and how will we drive 8 plus hours with a sick child? Do we try Denver Children’s where Ryan’s brother was treated for cancer, or Seattle Children’s where I worked for a time on the inpatient psychiatric unit? Last summer I contacted a doctor there to tell her our story and ask for help in putting all of these “clues” together to figure out why Fiona died. She kindly responded the same day to my email. She was a pediatric immunologist who works on the flu vaccine each year. She said she knew of a child who was previously healthy who died from the flu at their hospital; she said it does happen, and the flu can be deadly. This was a little reassuring at the time, but is not now when facing another flu season.
After last week, I wonder if a move to a remote area of Canada might be the safest course of action. It’s hard to dismiss the flu as a common illness when faced with the indisputable fact that it has ended the life of my child. Last week I prayed that God would allow Poppy to remain with us, or if that wasn’t His plan, for us to be able to bear it. Some people do lose more than one child; I have read their stories. A lot of people were praying for Poppy this last week. I am thankful she has recovered and her follow up appointment today went well. She will return to school tomorrow. Her illness has left little time to mourn Fiona, which was what I had planned to be doing. The guilt of neglecting Fiona even after her death is a load to carry. This disease shows me how little in control we are, and how I must keep my eyes on Jesus. He gave me the strength to survive the last week. The prayers from others upheld us, and reading His word gave me encouragement. No matter what happens in this life, I have assurance that the best is yet to come in the next. There will be no viruses, illness or death, and nothing to worry about ever again.