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How My Vaccinated Daughter Died From Meningitis and What I’m Doing About It

February 2, 2016 7 comments
This is a guest post, written by Alicia Stillman, Director of the Emily Stillman Foundation.  One of the missions of the Foundation is to raise awareness of meningococcal disease and the various vaccines that are now available to prevent it.    

February 2, 2013 my life changed forever.  I was told my beautiful and healthy nineteen year old daughter no longer had any brain activity, and that she would die.  Those words will forever haunt me.  There is no preparation, no training, and no practice for what was to come.  The loss of a child is like none other.  It is the wrong order. When you lose a child, a piece of you dies as well.

EmilyStillman

Emily was a sophomore at Kalamazoo College when she tragically contracted bacterial meningitis.  On February 2nd, 2013, Emily passed away with her family by her side.  Emily was able to donate 6 of her organs to 5 recipients, along with tissue and bones to countless others.

On January 31, 2013 my middle daughter Emily called home from college, and mentioned she had a headache.  I thought she was possibly coming down with the flu.  She thought it may be from lack of sleep.  We decided she would take Motrin and go to bed.  Several hours later she woke up to increased pain and was taken to the hospital where she was treated for a migraine.  It was not until hours later that the medical professionals realized they may be looking at meningococcal disease, and performed a lumbar puncture to confirm.

The entire two hour drive to the hospital I begged the medical professionals to double check the results.  Since I knew my daughter had been vaccinated against meningitis, I did not believe it was possible for her to have that disease.  I feared that something else would go untreated, and I wanted them to heal her.

When I arrived at the hospital, Emily was already unconscious as they prepared her for a craniotomy to relieve the swelling in her brain.  When the nurse took me to see her, she asked if I wanted them to call clergy.  That was the first time I actually realized the seriousness of this disease.  I did not understand how this could be happening.  My daughter only had a headache.  She was vaccinated.

Within 30 hours from the onset of her headache, my daughter was brain dead.  Her life was over.  We decided Emily would want to be an organ donor.  She was able to save five lives with six organs, and countless others with her bones and tissue.  She was a hero.

StillmanFamily2As I said goodbye to my sweet daughter in that hospital bed, I made her a promise.  Read more…

After Losing Babies to Pertussis Parents Make Plea for Prevention

January 28, 2016 17 comments

How is it that three families, who’ve never actually met one another, find themselves sharing words of consolation and encouragement at the same time each year?

How is it that these three families are forever bonded by their children, and the courage and compassion they have to share their stories?  

Carter, Callie and Brady were just infants when they had to say goodbye.  But during this week, back in 2010 and 2012, three babies lost their fight to pertussis, (more commonly known as whooping cough) and their families were forever changed.

In 2008, Every Child By Two (ECBT) launched a program called Vaccinate Your Baby, which was inspired in large part by the Romaguera family, who had contacted the organization several years earlier after having lost their baby Gabrielle to pertussis.

In the days and months following the death of Carter, Callie and Brady, the Dube, Van Tornhout and Alcaide families also reached out to Every Child By Two in hopes that they could turn their personal tragedies into a public health mission.

VYF_Full-InfographicToday, as Every Child By Two Parent Advocates, their commitment to pertussis prevention has undoubtedly helped bring about many positive and live-saving changes. They have not only raised awareness of the importance of adult Tdap boosters, but their efforts have helped alter the way in which the public is advised to protect newborns from pertussis.

Prior to the death of their children, none of these families were educated on the need for adult Tdap boosters.  They’ve since devoted a great amount of time to sharing their stories; in media interviews, in state legislative chambers,  on podiums at public health conferences, and in blogs and Facebook posts shared widely on social media.

New Recommendations Are Helping in the Fight Against Pertussis

Today, leading professional organizations such as the AAP, the American College of Nurse-Midwives (ACNM) and the American College of Obstetricians and Gynecologists (ACOG), all recommend that pregnant women receive Tdap boosters in the third trimester of each pregnancy. This not only helps to protect the expectant mom from contracting pertussis and passing it onto their newborn, it also provides passive immunity to the unborn baby.  This practice helps protect infants before they begin receiving their own pertussis immunizations through a series of five DTaP vaccine doses that begin at two months of age.

Before the DTaP shot was routinely administered to infants, about 8,000 people in the United States died each year from whooping cough. However, thanks to greater immunization coverage and greater public awareness, this number has dropped to fewer than 20 deaths per year. Unfortunately, because the bacteria is still widely circulating in our communities and not everyone is adequately protected, whooping cough still makes people very sick.  In 2014, as many as 30,000 people were diagnosed with pertussis and each year many are still hospitalized. The real danger is among children under 12 month of age.  About half of these infants who get whooping cough are hospitalized, and tragically approximately 1 out of 100 infants who are hospitalized will die.  So how can we better protect these babies?

Research Continues to Guide Vaccine Recommendations

Research indicates that family members are often the source of infection among infants, and most family members are passing on the infection without ever realizing they have  pertussis themselves. In one recent study, approximately 85% of infants with pertussis got if from a member of their immediate or extended family.  This is why Tdap boosters are now recommended for all family members and caregivers who spend time around babies.  In fact, families members should get their Tdap booster at least two weeks prior to the expected arrival of the baby, since it’s estimated that it takes that long to acquire immunity after getting the vaccine.

Most recently, the efforts and experiences of our Every Child By Two Parent Advocates have even helped inspire the expansion of the Vaccinate Your Baby program to the Vaccinate Your Family program.  When people of all ages are up-to-date on their recommended vaccines, they’re less likely to pass illness on to our vulnerable infant population.

We encourage everyone to visit the adult section of the Vaccinate Your Family website, where there are several resources that specifically help educate older individuals about the need for adult Tdap boosters, to include materials for grandparents who want to help protect their young grandbabies.

Please familiarize yourself with this Grandparent Toolkit and share these materials among your friends, family and colleagues.

Health & Safety Checklist

Tips for Soothing a Fussy Baby

Pledge for Family Members and Friends to Sign

Frequently Asked Questions

Questions to Ask Your Doctor About Vaccines

Every Child By Two stands with our Parent Advocates in our mission to ensure that no family should ever have to endure what they’ve been through.  This week, as we mark the anniversary of the passing of Carter, Callie and Brady, may we each share this video and the many resources on the Vaccinate Your Family website in an effort to educate the public about pertussis prevention. 

 

Shot of Prevention’s Year in Review: Top Posts from 2015

December 31, 2015 4 comments

As we prepare for the challenges of 2016, we want to thank everyone for a successful 2015.  Once again, the past year has been one of tremendous growth.  We’ve seen a record number of views and shares on a variety of Shot of Prevention blog posts, and we’re especially grateful to our blog contributors and many new subscribers.

In looking back over our efforts from this past year,  we would like to share a list of some of our most popular blog posts from 2015.  We hope that you will revisit these posts and share them with others so that we can continue to engage more people in these important immunization discussions.

1. Giving MMR Vaccine Early To Protect Children Against Measles

mary_beth_koslap_petracobAs the number of measles cases tied to the Disneyland outbreak continued to rise this year, parents grew concerned about possible measles exposure in children who are not yet old enough to receive their first dose of MMR (measles, mumps rubella) vaccine. The CDC recommendation is to administer the first dose of MMR between the ages of 12-15 months.  However, this recommendation leaves children under one year of age at risk. We had many parents with young children raising their concerns on our Vaccinate Your Family Facebook page and asking if they could give the vaccine earlier than recommended. In this post, Every Child By Two Scientific Advisory Board Member, Mary Beth Koslap-Petraco, DNP, PNP-BC, CPNP, FAANP provides some insight as to the vaccine recommendations and how parents can help to protect their young children from measles.  To learn more, read the article  here.

2. 147 Kids Died From Flu Last Year. My Scarlet Was One of Them

12336412_1734258090136116_829364839_nRebecca’s five-year old daughter Scarlet was one of the 147 children who would die from flu in the 2014-2015 season.  Prior to Scarlet’s death, Rebecca thought the flu was no big deal.  She didn’t realize that the flu could be dangerous to people of all ages; even those who are otherwise healthy.   In this post, Rebecca shares the struggles she has had in facing life without her daughter.  She also explains that while Scarlet will always be one of the many faces of the flu, her goal now is to prevent others from suffering the same tragedy that her family has.  To hear more about Rebecca’s mission to fight flu, read Scarlet’s story here

3. I’m a Pediatrician and I Gave My Daughter Pertussis

IMG_3039As a pediatrician, Rebecca Bakke MD, FAAP is often asked what she thinks about delaying vaccines, trying an alternate vaccine schedule or forgoing them all together.  In this post she shares a very personal experience in which she unknowingly infected her own daughter Claire with pertussis. The coughing started when Claire was just five weeks old and after is was confirmed that Claire had pertussis, Rebecca grew terrified.  As a pediatrician, she knew that infants with pertussis are at great risk for complications.  She also knew that antibiotic treatment for pertussis only prevents the spread of the disease, but that no medication can alter the disease course after the coughing starts.  To read Dr. Bakke’s personal account of pertussis, read the complete story here.

4. Disneyland Measles Outbreak: Should You Be Concerned?

8QgmhZV.jpgDespite the fact that measles was declared eliminated from the U.S. in 2000, we saw a significant outbreak in the United States in 2015.  As the outbreak spread, 2015 saw 189 people suffer with measles in 24 states.  People began wondering, Is measles something I should be worried about?”   In order to determine whether we should be concerned, this post addressed the facts about the disease, the vaccines we use to help prevent it, and the way in which measles is spread among various communities and across the nation.  The truth is that measles presents a risk to everyone, even the vaccinated.  To learn why, read the post here.

 

5. Family’s Exposure to Measles Reveals Importance of Herd Immunity

DrJacksAndFamilyDr. Tim Jacks has a three-year-old daughter Maggie who is fighting acute lymphoblastic leukemia (blood cancer) and as a result has a compromised immune system.  At the time this article was published, he also had 10 month old son Eli who had received all his recommended vaccines, but was too young for his first dose of MMR (measles, mumps and rubella) vaccine. Unfortunately, Dr. Jacks’ family was exposed to measles at a Phoenix Children’s Hospital clinic.  Frustrated and concerned, he responded by writing an open letter “To the parent of the unvaccinated child who exposed my family to measles.”   As the measles outbreak continued to spread throughout the nation, he presented testimony in front of the U.S. Senate Health, Education, Labor and Pensions Committee on The Reemergence of Vaccine-Preventable Disease: Exploring the Public Health Successes and Challenges .  To read more about his efforts to educate Congress about the plight of those who depend on herd immunity and the importance of protecting those who are most vulnerable to vaccine preventable diseases, check out his guest post here.

If you have suggestions for topics you would like us to address in 2016, or you would like to contribute a guest post for publication, please feel free to let us know by commenting below or emailing us at shotofprevention@gmail.com.  

If you want to ensure you don’t miss any of our new posts in 2016, simply subscribe to Shot of Prevention by clicking the link at the top right of this page.  You can also “Like” our Vaccinate Your Family Facebook page to receive updates on important immunization news and join in on group discussions.   

Thanks again for your continued support and best wishes for a happy and healthy new year!

 

Surviving Meningitis: Like a Piece of Art, My Body Tells A Story

December 15, 2015 1 comment
This guest post has been written by meningitis survivor Samantha Bennett.

I have been an artist most of my life. Like a piece of my art, my body tells a story. My story is drawn on my face, it’s been stamped on my arms and legs. My hands are pieces of art by themselves.

Sam Bennett Studio Fix 2015

My entire life, people have been asking me “What happened to you?”

As a little girl, I would explain my scars— without much detail, I’d just simply say that I was sick when I was a baby. It was usually my mother that had the courage to explain why I had missing fingers or why I limped. Or why my face had scars. It wasn’t until I had become a mother myself that I learned how much my mother had been through for me. Having a family helped me see that telling our story could make a difference in other parent’s lives— maybe even save people’s lives.

What happened to me?

Sam Bennett baby pic

I had meningococcal disease. I rarely call it “meningococcal disease” because people draw blank stares when I say it. It’s also known as bacterial meningitis, but even then not a lot of people know much about it. My mom had taken me for baby photos the day before the word meningitis was introduced to my family. We still have the photo— a chubby, happy, healthy 9 month old baby posing for a very 70’s styled baby picture. That picture tells a thousand words now. The day after taking that photo, I was hanging on for my life. One minute, I was a healthy baby and within 24 hours I was the sickest baby in the hospital. Meningitis struck fast.

My symptoms started like a teething baby with a fever, but within hours the fever worsened and I had a weird purplish spot that appeared on my arm.

Sam Bennett Baby Picture 2It was time to go to the hospital. Turns out, the appearance of that weird “spot” was what saved my life. That’s “the rash” one of the dangerous signs of meningococcal disease. The disease ripped through my infant body fast. As I hung on for life, a team of doctors worked hard to save my arms and legs, even parts of my face. The hospital would become a place that I would be very familiar with for the rest of my life. Meningitis left my body covered in scars. I lost half of my right foot, I lost parts of my fingers, my face has undergone over 25 reconstructive surgeries to correct the damage from the disease.

Recovery from meningitis was not easy, but the healing from many surgeries lead me to be the artist I am today.

As a little girl recovering from surgery, I would pass time by drawing. My hands were not perfect, but creating art was something that came easy to me. My meningitis surgeries, my hospital visits and artwork have followed me much of my life. I knew that creating artwork with missing fingers made me a bit different, but I had no idea that my art would someday give my scars a voice to help parents and I could use my art as a platform to educate others.

I feel like every person needs a moment in their life that defines who they are, mine came to me when I became a new mother.

Sadly, my introduction into motherhood wasn’t the best. My husband and I lost our first baby at 2 days old. There I was leaving the hospital yet again in my life, but this time being strong for myself and my husband. My heart changed the day I became a mother and my courage grew. I heard my entire life that it was a miracle I survived a deadly disease as a baby. Although our loss was not related to a disease, nothing became more Nolan and Archer Bennett 7-23important to me than to spare other parents heartache.

Today, we have two adorably wild little boys— that I am happy to report have been vaccinated to protect them from meningococcal disease. I am a professional artist and a spokesperson with the National Meningitis Association. I proudly use my artwork as a platform to speak out about the dangers of bacterial meningitis and to educate other parents about the importance of vaccination.

I was excited to learn that Every Child By Two has expanded their mission to protect individuals from preventable diseases throughout the life span with their  Vaccinate Your Family program.

Unfortunately, about 1,000 -2,600 people get meningococcal disease each year in the U.S. and 10–15 percent of these people die. Of those who survive, about 1 in 5 will have permanent disabilities such as brain damage, hearing loss, loss of kidney function or limb amputations.

On the new Vaccinate Your Family website, there are several places to find information about protecting yourself and your family from meningococcal disease with the following vaccines: Read more…

147 Kids Died From Flu Last Year. My Scarlet Was One of Them.

December 7, 2015 43 comments

Rebecca Hendricks, Every Child By Two‘s newest parent advocate, decided to share this guest post on Shot of Prevention after connecting with us on our Vaccinate Your Family Facebook page.

I never imagined that jumping on Facebook to catch up with friends would have me reliving the worst day of my life.

12336412_1734258090136116_829364839_nMy five-year old daughter, Scarlet Anne Taylor, died as a result of influenza last season.

She was the first child out of 147 who would die from flu in the 2014-2015 season.  She passed away on December 19, 2014, in Tacoma, WA, just 48 hours after the onset of symptoms and within 4 hours of when she arrived at the hospital.

It all happened so quickly that I still struggle with the reality of it all.  One day she was sent home from school with a fever, the next day she was pronounced dead before we even knew the cause.  It wasn’t until I received a call from the medical examiner a week and a half later that I would come to learn that my daughter had died from influenza (H3N2).

I was on Facebook back in October when I saw this chilling post on Every Child By Two‘s  Vaccinate Your Family Facebook page.

Last week marked the official end of the 2014-2015 flu season. Sadly, the season was marked by 146 pediatric deaths. Of those 146 children, we know the vaccination status of 123 of them – 14 were ineligible for vaccination due to age, 15 were vaccinated, and 94 were unvaccinated. As we begin the 2015-2016 season, we urge every one to get a flu vaccine. No matter what your age, the flu can be dangerous and even deadly. A flu vaccine is your best defense. 

(Sadly, another death was reported to the CDC  following this post, which brought the total number of children who died in the 2014-2015 season to 147.)  

To be completely honest, prior to Scarlet’s death I was not aware of the dangers of the flu, the symptoms of the flu, or the fact that influenza could be deadly to an otherwise healthy child.  I thought the flu shot was a way for pharmaceutical companies to make money. I thought the vaccine was more likely to give you the flu than prevent it.  I thought the vaccine wasn’t necessary because everyone who got the flu got over it. I thought it was no big deal.

To say I was mistaken is an understatement.  

In the months since Scarlet’s death I can’t help but wish I had known more.  If only I had identified her symptoms as influenza sooner.  If only I had known how dangerous the flu could be.  If only I had gotten my family vaccinated.  Is it possible that I could have done something that may have saved her life?

12285905_1734258000136125_398305480_nAs I approach the anniversary of Scarlet’s death, I think of the sweet, beautiful and vibrant child that once graced this earth.  Only a parent understands the absolute love you have for your child and the monumental desire that roars like an open fire inside you to protect them at all costs.

I still feel her presence everywhere, but mourn the fact that I can no longer see her.  Touch her.  Or protect her.

Whatever you imagine it might be like to have your child die, multiply that a zillion times, and you’re still not even close. The medical examiner should have written a death certificate for me as well, because when Scarlet died, a part of me died too.

I almost feel like less of a mom now. Or just not entirely whole anymore. Incomplete.

The shape of my family has changed. It’s been almost a year since Scarlet left us and yet I still find myself questioning how I’m supposed to respond when people ask me how many children I have.  I have 3 kids now. But I had four.

Just a few weeks ago, we went to a restaurant and I ordered four kid’s meals. Then it suddenly occurred to me… Read more…

Why My Kid Won’t Be Getting These New Vaccines Anytime Soon

September 11, 2015 7 comments

There’s a part of me that understands why some people are hesitant to get newly approved and recommended vaccines.

“I don’t want my child to be a pharmaceutical guinea pig.”

“The vaccine hasn’t been around long enough.  How can we really know the long-term side effects?”    

“I didn’t have half the vaccines that kids today get and I survived.  Why do we bother to give so many vaccines for diseases that aren’t even all that serious?”

These are the kind of comments I’ve heard in school, at the doctor’s office, on the playground with other parents, or posted as comments on social media. While I understand that people may be hesitant, and sometimes even fearful, of something new, I tend to address my concerns by learning more about whatever it is I’m afraid of.

Since I began contributing to this blog six years ago, I’ve tried to address some of the most popular immunization concerns I’ve heard from other parents.  In sharing what I’ve learned, It is my sincere hope that others will be better able to make informed immunization decisions based on the sound scientific evidence that I include in my posts.

However, the approval of two new vaccines (HPV9 and MenB) have actually caused me much concern and distress lately.

It’s not that I’m worried about the dangers of these new vaccines.  Quite the contrary.  

I’ve sat through enough presentations at immunization conferences and committee meetings to appreciate the extensive amount of data that is collected and analyzed by hundreds of scientists and doctors as a vaccine makes it’s way through the various phases of clinical trials.

img3I’ve become familiar with the elaborate process that leads to FDA approval, and I’ve witnessed discussions by the Advisory Committee on Immunization Practices (ACIP) when they’ve considered modifications or additions to the recommended vaccine schedule.  By the time a new vaccine is ever recommended for my child, the vaccine has already been administered to thousands of people in clinical trials and the vaccine’s efficacy and potential adverse effects have already been well documented.  In fact, many vaccines, are already being used in foreign countries for years prior to being approved here in the U.S.  This provides a considerable amount of safety and efficacy data for us to analyze prior to U.S. licensure and recommendations.

With all the available data that is scrutinized by so many experts, I’m not concerned at all about the vaccine’s safety.  What I am concerned about is how long it takes for the public to finally have access to these new vaccines after FDA approval and ACIP recommendation.

In the case of these two new vaccines (HPV9 and MenB) my personal experience has been far from ideal.  It’s been at least three months since the new ACIP recommendations and yet I’m still unable to locate a single dose of either vaccine within a 50 mile radius of my home.  To make matters worse, I’m hearing reports from parents who are getting inaccurate information about the availability of these vaccines. Read more…

Will We See Broader Recommendations for the MenB Vaccine?

June 10, 2015 3 comments

At an upcoming meeting of the Advisory Committee on Immunization Practices (ACIP) on June 24th, committee members will consider whether to recommend routine use of MenB vaccines in adolescents.

MeningococcalCurrently, the ACIP recommends that adolescents receive the quadrivalent meningococcal conjugate vaccine (MCV4) at ages 11-12, with a booster dose at age 16, to protect against the A, C, W and Y strains of meningococcal bacteria.  Statistics show that nearly 80% of teens have received at least one dose of this vaccine, which is fairly remarkable considering the fact that the vaccine is recommended, but is not mandated for school or college in most states.  However, it’s important that parents realize that the MCV4 vaccine does not prevent serogroup B meningococcal disease, which currently accounts for 1/3 of all U.S. cases of meningococcal disease and has been spreading through college campuses in recent years.

Fortunately, two new vaccines to protect against meningococcal serogroup B were recently approved by the FDA. The Trumenba vaccine is developed by Pfizer Pharmaceuticals and requires three doses, and the two-dose Bexsero vaccine was developed by Novartis Vaccines and Diagnostics (GSK acquired Novartis Vaccines in March 2015, excluding the Novartis influenza division). After these vaccines received FDA approval in late 2014, the ACIP recommended a meningococcal serogroup B vaccine (MenB) for certain high-risk groups at their next meeting in February 2015.

However, many people questioned why the recommendation wasn’t for a broader population.  If the ACIP recommends that all adolescents protect themselves with the MCV4 vaccine, why wouldn’t they also be suggesting parents protect their children from the dangers of serogroup B as well? Read more…

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