Losing your 20 year old healthy child to flu is something no parent ever expects to happen.
by Franki Andersen
Seven months ago, I lost my beautiful daughter, Brittany Danielle Andersen, at the age of 20. I’m sharing her story so that parents and young adults will know that the flu doesn’t just take young kids and old people. It takes whomever it wants at any age.
As a mother, there is nothing worse than seeing your child sick and hospitalized. When Britt was young she loved to sing, dance, play on her swing set and dress up. But we had a few medical scares in those early years. In fact, she was on life support four times between the ages of 18 months and 6 years due to repeated bouts of strep throat that would effect her lungs. But then, after a surgery to remove her tonsils and adnoids, she never got sick again, and I was grateful that those hospital days were behind us.
That was, until she fell ill with influenza A earlier this year.
It was a Thursday, March 24th and she said her throat was itchy so she picked up some TheraFlu before I dropped her at her dads’ house. I talked to her later that evening to see how she was feeling, and I could hear how the sore throat had altered her voice. But she said that she was fine.
The next day, her father dropped her off before work. She stood in the doorway for a minute and when I asked her if she was coming in, her reply was “I don’t quite feel like myself”.
I asked her if she had breakfast and she said no, so she had some toast and juice before going to lie down. I propped her up with some pillows so she was sitting upright on her bed and about fifteen minutes later I checked in on her and asked how she was. Her reply was simply “Ok” but that obviously wasn’t true because those were the last words she ever said to me.
Around 11:45, I heard a weird rattle coming from her room. I went in and found her lying on her back. When I tried to wake her, I noticed white saliva coming out of her mouth. I called 911, and when they got there, they could not get a pulse. They worked on her for what seemed like eternity and then put her in the ambulance. I followed the ambulance to the hospital and at 2pm they told us they got a pulse back.
What a relief, I thought and collapsed into a chair.
They then life-flighted her to Sioux Falls, SD. When I arrived there the head nurse and lung doctor told me that she was not stabilizing. They had maxed out all the blood pressure meds they could give, and nothing was working. They said the word septis, which I was unfamiliar with at the time, and they told me I would need to “make a decision”.
At 6:30 am on Saturday, March 26th, 2016 I made that decision and my daughter was taken off of life support.
As a mother and a nurse, I was vigilant in having both of my children up-to-date on all recommended vaccinations, including meningococcal vaccination. I was under the common misconception, as many parents are, that the meningococcal vaccine that my daughter received would fully protect her from meningococcal disease, when in fact, it didn’t protect her against meningitis B. The meningococcal vaccine (MCV4) only protects against four of the five common groups (ACWY), leaving adolescents and young adults vulnerable to meningitis B. Meningitis B is a type of bacterial meningitis, also known as meningococcal disease, which is a potentially fatal bacterial infection that can kill a healthy person within 24 hours.
When my daughter Kimberly Coffey died in 2012 from bacterial meningitis, a vaccine was not available to protect her. But since 2014, meningitis B vaccination has been available in the United States. Kimberly was a perfectly healthy 17-year-old high school senior, and I believe she would be alive today if meningitis B vaccination had been available to her.
I established The Kimberly Coffey Foundation in Kimberly’s honor to educate other parents and health care providers about meningitis B, also known as MenB.
It’s critical that parents know that MenB vaccination is now available, and that without requesting MenB vaccination in addition to the common meningococcal vaccine (MCV4), their child will not be fully protected against meningococcal disease and MenB.
The Kimberly Coffey Foundation has partnered with Pfizer on the National Meningococcal Disease Awareness Survey to gain a better understanding of parents’ knowledge of meningococcal disease and its available vaccines. This 2016 survey revealed that nearly 4 out of 5 parents didn’t know their child wasn’t fully immunized against the five common groups of meningococcal disease unless they had two meningococcal vaccines (MCV4 and MenB).
The bottom line is this – without adding MenB vaccination, we are going to lose more lives. There will continue to be more college outbreaks, especially since MenB has been responsible for several recent college outbreaks in the United States. According to data released by the CDC, MenB currently accounts for approximately 50% of meningococcal disease in the United States among persons aged 17-22 years old. MenB vaccination is available for individuals ages 10-25, and public health insurance and most private insurance plans provide coverage. However, your child’s provider may not mention it.
I want parents to have the knowledge to request MenB vaccination, in addition to the meningococcal vaccine, so that their children can potentially be fully protected against this devastating disease.
As a mother who lives every day with the heartache of not seeing my beautiful daughter live the full life she deserved, I know only too well how important MenB vaccination is. My daughter Kimberly’s life was one too many lost to this terrible disease.
I will be Kimberly’s voice as I continue to promote awareness of meningococcal disease, which includes MenB. I don’t ever want another parent to experience what I have. And more important, I don’t want another person to experience what Kimberly did when she battled for her life.
Kimberly contracted MenB two years too early—two years before the MenB vaccine was made available. She didn’t have the protection of the MenB vaccination, but your children can. Please protect your children – because YOU can.
For more information about meningitis B and the MenB vaccine, please visit the Kimberly Coffey Foundation at www.kimberlycoffeyfoundation.org.
Every Child By Two (host of the Shot of Prevention blog) welcomes guest blog posts on a variety of vaccine related issues. The views and opinions expressed in these guest posts do not necessarily represent the views of the Every Child By Two organization.
Preparing a kid for college is akin to preparing for their arrival at birth. There are so many details to think about, choices to consider and preparations to be made that it’s easy to become completely overwhelmed. As parents, we want nothing more than to ensure that our children are well prepared – both physically and emotionally – for all the challenges they are about to face.
While it’s natural to focus on the dorm items your child might need, parents should also help prepare their teen for the responsibilities they will have in managing their own health. Once they move into that dorm, you will no longer be there to fill their prescriptions, fetch their medicine, make their doctor’s appointments, or otherwise ensure they are getting the medical attention they need. It will be up to them to maintain a healthy diet, get adequate rest, and protect themselves from the dangers of alcohol, drugs and unwanted or unsafe sex. They will need to know when to seek professional medical attention if they should get sick, injured or find themselves struggling with mental or physical needs.
Before your child heads off to college, here are five things you can do to help them stay healthy:
1.) Get your child a physical exam.
When kids are young, parents are accustomed to bringing them in for well-visits. However, it’s not uncommon for kids to miss yearly check-ups in lieu of sports physicals and sick visits. Before your child heads to campus, make sure to schedule a comprehensive health exam. The conversation your child has with the doctor should help prepare them to manage their current health conditions while away at school (such as any known allergies, specialist appointments and regular medications) while also opening the discussion to the dangers of stress, poor diet, inadequate sleep, binge drinking, drug experimentation and unsafe sex. If their provider fails to cover these issues completely, it’s important that parents weigh in on these concerns as well. You can let your child know that while you trust them to make responsible decisions, you are always available for advice and support.
2.) Get all the recommended vaccines, not just those required by the school.
For many students, college can be a time of significant stress. Students don’t always eat a healthy diet or get the proper rest. They live in close quarters and have a tendency to share cups and eating utensils. At some point your child may travel, or engage with fellow students and faculty members who have traveled, to areas where diseases are more prevalent. And studies show that college students are more likely to engage in risky behavior. All these conditions make students more susceptible to illness. It is also what contributes to the chances of outbreaks occurring on college campuses.
Making sure your child is up-to-date on all the recommended vaccines, not just those required by the school, can help them avoid dangerous and sometimes even deadly illnesses. While there are several immunizations that are recommended for college-age students, each state and college may have different admission requirements.
To best protect your college-bound student from preventable diseases, parents should consider the following vaccines for students before they arrive on campus: Read more…
This guest post was written by Neal Raisman, PhD, to highlight the threat of meningococcal disease in the U.S. as part of Vaccinate Your Family’s “State of the ImmUnion” campaign.
My son Isaac was a very healthy 26-year-old who worked out every day and took great pride in how and what he ate. On September 24, 2005 he called home from college to tell his mother he had a terrible headache and felt lousy. Since he complained of chills and a fever, my wife and I thought he was suffering with the flu and told him to get some sleep and drink lots of fluids. He called again to report that the headache was even worse and he felt even sicker. Again, his mother re-assured him that it was probably the flu.
Little did we know at that time, but Isaac did not have the flu.
What he had was serogroup type B meningitis and it was quickly eating at his body and brain.
He died soon after that call with his mother. It wasn’t until later that night that I was able to get into his apartment where I found his body. This is the last photo that was ever taken of our son.
Isaac had received a meningitis vaccine before college, but back in 2005, the only meningococcal vaccine available was one that covered the serogroup strains of A, C, W and Y. At that time there was no vaccine to prevent the B strain that killed our son.
But there is now.
I’m sharing our story today so that every mother and father will know that serogroup B meningococcal disease kills and maims without mercy.
Not every person infected will die like Isaac. Sometimes victims will live in a brain-dead coma. Some will lose limbs. Now that I know how quick and devastating this disease is, I must caution parents to do everything they can to protect their children before it is too late.
In 2014, nine years after we lost Isaac, the FDA approved the first vaccine to prevent the serogroup B strain of meningococcal disease.
In order to offer the most complete protection from all the preventable strains of meningococcal disease, this MenB vaccine needs to be administered in addition to the MenACWY vaccine that is already on the recommended immunization schedule.
While the current burden of disease appears to be low, there have been outbreaks of serogroup B meningococcal disease at U.S. colleges that have resulted in loss of limbs and loss of life. Following FDA approval, it is customary for the Advisory Committee on Immunization Practices (ACIP) to evaluate the data and determine whether the vaccine should be added to the recommended schedule. With FDA approval, the safety of the vaccine was not in question, however the ACIP felt it was necessary to continue to review data pertaining to vaccine effectiveness, duration of effectiveness and impact of the vaccine on carriage and herd immunity. Therefore, the initial ACIP decision was to make a routine recommendation for individuals at highest risk of disease and in outbreak situations, while recommending that those in the 16-23 year age range “may be vaccinated to provide short term protection against the strain”. This is what is known as a “permissive” or “Category B” recommendation.
In the beginning, there was speculation that due to this “Category B” recommendation, that not all insurance companies would cover the cost of the vaccine. However, as a condition of the Affordable Care Act (ACA), all health plans must start covering any recommended vaccine (even Category B) with no out-of-pocket costs when provided by an in-network healthcare provider. Health plans have until one year after the effective date of the recommendation to comply, so it is possible that some patients won’t be covered until their plan renewal, which may occur more than a year after the October 2015 recommendation was made. However, public health partners nationwide continue to report that providers (including Vaccine For Children providers) are not universally stocking the vaccine, nor making strong recommendations for its use. In addition, although the majority of health plans are covering the cost, some may not be following ACA guidelines, which can be quite ambiguous. Some may be covering the cost of the vaccine for one category of recipients (i.e. high risk) but not those who “may” be vaccinated.
As a parent of a child who died from meningococcal disease, I still worry that this ambiguous recommendation is leaving our children unprotected.
A vaccine is now available to prevent the B strain that my son died of. Yet this limited recommendation means that many doctors won’t be discussing the availability of the vaccine, and many parents won’t know that the vaccine is available. Worse yet, many parents may wrongfully believe their child is fully protected from all the preventable meningococcal strains when their child receives the MenACWY, which is not accurate.
So now we are left wondering, what is the benefit of the serogroup B meningococcal vaccine if parents aren’t aware that it is available or believe they can’t afford it? How many lives will be lost due to the current policy? And what will it cost to stop letting young men and women be horribly maimed or die?
After losing her son Evan to meningococcal disease, Lynn Bozof’s life became a mission to prevent other families from experiencing similar tragedies. She has since co-founded the National Meningitis Association (NMA), to help educate people about the dangers of meningococcal disease. In this special State of the ImmUnion post, Lynn addresses some of the most common questions parents have asked her about meningococcal disease and the ways it can be prevented.
How would you describe the current “State of the ImmUnion” for meningococcal disease? How many cases of meningococcal disease are there in a typical year? Are enough people protected?
In the 14 years since NMA was founded, vaccination rates have climbed steadily while disease incidence has declined. Although we are pleased with this progress, there is much more work to be done to strengthen the State of the ImmUnion.
Annually, there are approximately 800-1200 cases of meningococcal disease in the United States. As an organization comprised of survivors and families who have lost children to this devastating disease, we at NMA know that one case is too many.
While the Centers for Disease Control and Prevention (CDC) routinely recommends meningococcal vaccines beginning at age 11-12, one in five U.S. teens are not vaccinated as recommended and one-third of those who get the first dose don’t go on to get their booster dose. This leaves adolescents unprotected as they enter some of their most vulnerable years.
What can parents do to protect their families from meningococcal disease?
As a parent who lost my college-age son, Evan, to meningococcal disease, I urge all parents to make sure their child is vaccinated. Vaccination offers the best protection against this disease, and parents should understand that to be fully vaccinated against meningococcal disease, your child should receive two kinds of meningococcal vaccines.
There are five major serogroups of meningococcal disease: A, C, W, Y and B.
MenACWY Vaccine: The Centers for Disease Control and Prevention (CDC) recommends meningococcal vaccination against serogroups A, C, W and Y for all children at 11-12, with a booster at age 16.
MenB Vaccine: After the FDA approved this vaccine in 2014, the CDC made a permissive recommendation for children ages 16-23, with a preferred age of 16 to 18 years.
Because it behaves somewhat differently, the B serogroup was not included in the ACWY vaccine, and it took longer for scientists to design an effective vaccine.
Today, nearly half (43 percent) of all meningococcal disease cases among U.S. teens and young adults are caused by serogroup B. Since MenB is a relatively new vaccine, and not routinely recommended, many parents and healthcare professionals remain unaware of this vaccine. This is particularly concerning since it’s the most common cause of meningococcal disease in adolescents and the cause of several outbreaks on college campuses in recent years. This is why we urge parents to have a conversation with your child’s doctor to ensure your child is fully vaccinated.
My doctor never mentioned a separate vaccine for serogroup B? Why is that?
While the MenACWY vaccine has been routinely recommended since 2005, the MenB vaccine received FDA approval in 2014. That is not to say this is a “new” vaccine. The MenB vaccine has been used in other countries for many years already, and safety and efficacy data from these countries has been extensively reviewed by the CDC’s Advisory Committee for Immunization Practices (ACIP). After FDA approval in the U.S., the Committee gave this vaccine a permissive or “category B” recommendation. Unlike a routine recommendation, this recommendation puts more responsibility on parents to request the vaccine, which is why it is important to be proactive and ask your doctor about it.
Are there certain people who should be particularly concerned about meningococcal disease? How easily does it spread?
Vaccines are recommended for adolescents and young adults because they are at higher risk of contracting meningococcal disease.
The following factors increase the risk of disease: being an adolescent or young adult, spending time in large crowds like parties or dorms, and participating in behaviors like kissing or sharing drinks. But, anyone at any age can contract it.
Other people who are at higher risk for the disease include:
- Infants under 1 year of age
- People living in crowded settings like college dorms or military barracks
- People living with HIV
- Those with persistent complement component deficiency or anatomic or functional asplenia
- People traveling to certain areas outside the U.S. such as the meningitis belt in Africa
- Laboratory personnel who are routinely exposed to meningococcal bacteria
- Those who might have been exposed to meningococcal disease during an outbreak
Meningococcal disease is contagious. It is spread through the exchange of respiratory secretions during close contact such as kissing, sharing drinks or coughing on someone. Although meningococcal bacteria are very dangerous, they cannot live outside the body for very long. This means the infection is not as easily spread as a cold virus. About one in ten people carry meningococcal bacteria in their nose or throat without showing any signs or symptoms of the disease. These people can unknowingly transmit the bacteria to others.
Of those who contract the disease, 1 in 10 will die and 2 in 10 will suffer from long term complications, including deafness, brain damage, or limb amputations.
My child was required to get a meningitis vaccine before middle school. Is she still protected or does she need a booster? If so, when should she get one?
This guest post was written by Alethea Mshar out of concern for her son Ben. A version of this post originally appeared on her blog Ben’s Writing, Running Mom.
Like all parents, my child’s health is very important to me. That’s why, even after getting an autism diagnosis for my son, I still believe in and advocate for vaccinations.
I don’t believe autism is caused by MMR or any other vaccinations.
The allegations made by Andrew Wakefield, the man who tried to convince the world of an MMR vaccine-autism link, were based on falsified data, yet he continues to make his claim to try to frighten people throughout the world. This article by Brian Deer systematically addresses Wakefield’s flawed theories and debunks the autism myth that Andrew Wakefield has perpetuated.
As if that weren’t enough, there have been countless studies that have investigated any possible link between vaccines and autism and no evidence can be found to support such a link. (You can access the latest published research here, here and here.)
The science is clear, and yet there are many autism advocacy organizations that continue to install fear in parents who just want what’s best for their children.
As this Newsweek article explains:
“Despite the science, organizations involved in the anti-vaccine movement still hope to find some evidence that vaccines threaten children’s health. For example, the autism advocacy organization SafeMinds, —whose mission is to raise awareness about how certain environmental exposures may be linked to autism, recently funded research it hoped would prove vaccines cause autism in children. But this effort appears to have backfired for the organization—since the study they funded failed to show any link between autism and vaccines.”
Alycia Halladay, chief science officer at the Autism Science Foundation, commends SafeMinds for financially supporting the study, but she worries that some autism advocates may be asking the wrong questions.
“I’m not saying that we need to stop funding research in the environment, because we know the environment does impact neurodevelopment,” she says.
However, Halladay explains that organizations that look to blame vaccines for causing autism are “playing whack-a-mole”.
“First, the proposed association was between the MMR vaccines and autism. Then that was disproven. Then it was the thimerosal components in vaccines; now that has been further disproven in a carefully designed animal model study that aimed to specifically examine that question. It has also been suggested that the association is because of vaccine timing, but that too has been disproven. The target always seems to be moving, and the expectation is that scientific resources will be diverted to address each new modification of this hypothesized link.”
While there may always be people who will believe there is a link between vaccines and autism, despite the science that proves otherwise, I’m writing today to explain another issue that has swayed my decision to support vaccines.
This issue is one of life and death for my son Ben.
I realize, very clearly, that without vaccinations my son would die.
That is why I am a fan of modern medicine and the science that makes vaccines possible. If Ben had been born a century sooner, he wouldn’t have survived his Hirschsprung’s disease. Had he been born less than a half century sooner, he wouldn’t have survived leukemia. As it is, we have come face to face with his mortality several times. I see vaccinations along the same lines as chemotherapy – far from perfect, but with the help of the scientific method, getting better all the time. Vaccines, and even chemotherapy in Ben’s case, are the best shot we have at giving our child a long, healthy life.
For us, though, it goes a step further.
Ben is also immunocompromised.
That means that even fully vaccinated, he doesn’t have enough ability to fight off diseases. He is that kid. The kid who needs herd immunity. He’s the reason our whole family gets flu shots and chicken pox vaccines. He’s the kid who needed boosters for pneumococcal vaccines – because his body lost immunity to them. Even though we do our best to protect him, he’s the kid that could get infected during a measles outbreak. And he is the kid whose body is weak and who is very likely to succumb to a disease like measles, which would inevitably hospitalize him or worse…cost him his life.
I wrote this piece after weeks of consideration. I realize this could ruffle feathers. So I ask…
If you don’t vaccinate, have you researched the diseases we vaccinate against as well as the side effects of vaccinations? Have you seen what polio and diphtheria can do? Do you realize that if measles encephalitis sets in that your child will be isolated in the Intensive Care Unit while you wait to find out if he or she is the lucky one who survives with brain damage? And do you realize that, statistically speaking, the greatest risk in getting a vaccine for your child is driving your child to the doctor’s office?
I realize the rhetoric goes around and around, and that I’m about as likely to change your mind as you are likely to change mine. But if there’s that tiny chance that you’re really considering all the facts, I’m hopeful that Ben’s face and plight would make a difference. After all, I am his mother, and I must do everything I can to protect him and keep him healthy. I have to try.
I have a sad feeling that it will take a true epidemic to turn the tide. I just hope that my child will not end up as a casualty. He is not a statistic, nor would I ever want him to be one…he’s our precious child and we don’t want to lose him.
So please remember, your vaccination status could mean the life or death of a child like Ben.
Every Child By Two is collaborating with various immunization advocacy organizations to collect personal stories about the value of vaccines. These stories will then be shared with state and federal legislators throughout National Immunization Awareness Month (NIAM) in August. Help ensure that our government representatives know that our country, our communities, our students and our families deserve protection from vaccine preventable diseases. Join the movement and speak out in favor of vaccines by sharing your story at the following link: bit.ly/28NoZCR.
Parents who have watched their child suffer from a vaccine preventable disease can often feel blindsided. Prior to their own personal experiences they’re usually unfamiliar with the dangers of these diseases. Sometimes they don’t realize that these diseases are a threat or that they continue to infect people around the country and the world. In cases of influenza and pertussis, we often see children who were unvaccinated because they were too young to start receiving these vaccines. In other cases, like those involving meningococcal serogroup B, parents were simply not aware of the need for, or the availability of, a certain vaccine. There are even times when parents who have lost a child to a vaccine preventable disease are surprised to learn that some people choose not to vaccinate, and in doing so contribute to disease outbreaks that put others at increased risk.
In the 25 years that Every Child By Two has spent trying to protect families from vaccine-preventable diseases, they’ve had the distinct honor of working with many parents who’ve lost a child to a preventable disease. These Parent Advocates want to prevent such a tragedy from happening again and in working with organizations like Every Child By Two, they’re able to use their personal stories to help educate the public about the need for vaccines.
Katie and Craig Van Tornhout are two such people who have turned a tragedy into a personal mission.
After five years and four miscarriages this young couple believed their prayers had been answered when they finally welcomed their precious daughter Callie into their lives. However, their joy quickly turned to sorrow on January 30, 2010, when Callie died of pertussis at only five weeks of age.
Callie was too young to have started her infant DTaP vaccination series, which begins at 2 months of age and helps protect against tetanus, diphtheria and pertussis. In the months that followed Callie’s death, the Van Tornhout’s learned a lot about the dangers of pertussis and the importance of adult Tdap vaccine. They learned that pertussis is especially deadly to infants and that
most infants who contract pertussis are typically exposed by an adult whose own pertussis immunity may have waned from the vaccine they received as a child. And they learned that Callie contracted pertussis in the very hospital she was born in.
In an effort to prevent other children from suffering the way Callie had, the Van Tornhout’s are now helping to educate others about the risk of pertussis. They not only encourage other parents to fully vaccinate their children, but they stress the importance of adult Tdap boosters, which are especially important for expectant mothers as well as the close family members and caregivers of young babies.