Surviving Meningitis: Like a Piece of Art, My Body Tells A Story
Dec 15, 2015

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.

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?

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.

It 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 important 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:

• Baby & Child: Haemophilus Influenzae type b (Hib) is a serious illness caused by a bacteria that often results in meningitis.  This illness is best prevented with a Hib vaccine which is recommended in three to four doses (depending on vaccine brand) at 2, 4, 6 and between 12-15 months.  Unfortunately, this vaccine was not available when I was a child.
• Preteens & Teens: The Meningococcal conjugate vaccine (MCV4) covers serogroups A, C, W and Y and is routinely recommended for all children 11-12 years of age, with a booster dose at age 16.
• Although meningococcal conjugate vaccine is not routinely recommended for children under 11 years of age, it can be administered to high risk children.  I insisted on this vaccine for my own children but to learn more about who might be considered at increased risk, click here.
• There has been considerable debate surrounding the approval of a new infant meningitis vaccine. In 2012, the FDA licensed Hib-MenCY-TT for the prevention of invasive Hib and serogroups C and Y meningococcal disease in children aged 6 weeks through 18 months. While the vaccine was deemed safe and approved for use, the decision to add the vaccine to the recommended infant schedule involved considerations that extended beyond safety. Immunization experts had various factors to consider. First, the vaccine didn’t contain the serogroup B strain, which means that a significant number of infant cases would not have been prevented, even with good vaccine coverage. To add to this, it was determined that there had recently been a reduction of incidence of the disease in infants, which may have been a result of an increase in overall adolescent vaccination. It was projected that routine vaccination would prevent about 25% of cases in infants, which translated to a total of 44 cases and approximately 2-4 deaths per year. As far as public policy goes, the number was not deemed significant enough to warrant routine vaccination of an entire population. However, the ACIP did vote to recommend the use of Hib-MenCY-TT for high risk infants.
• Two different serogroup B meningococcal vaccines were recently approved by the FDA and have since been recommended for people 10 years or older who are at increased risk for serogroup B meningococcal infections.  These vaccines may also be given to anyone 16-23 years old when requested by parents.  They provide short term protection and the recommended schedule depends on which vaccine you get.  Since there have been several outbreaks of serogroup B meningococcal disease on college campuses in the past two years, talk to your doctor to find out if serogroup B meningococcal vaccine is appropriate for your child.  You can also read these Shot of Prevention blog posts to learn more.

Art work created by Samantha Bennett, in memory of Landon, a 3 year-old victim of meningitis.

I may have been an infant when I fell victim to meningitis, but my illness has left me with a lifetime of suffering.

I have had reconstructive surgery on my face since I took that picture in my studio that appears above.  In fact, I have had 6 reconstructive surgeries in the last two years. I was supposed to have one this week, but I canceled it. I am going to try to retire from reconstructive surgery, at least as long as I can. But I will never stop trying to save others from suffering with meningococcal disease.

In that picture above I’m holding a drawing of a little boy named Landon. He had meningitis when he was 3 years old and sadly, he didn’t make it. His mom reached out to me and the final art that I created in appears here in his memory.  My art is most definitely a form of expression and therapy for me, as I hope it is for others, like Landon’s mom.

To read more about my art and my story please visit www.PainterSam.com.

Samantha Bennett integrates her advocacy into everything she does, from presenting her paintings at local art studios to publicly sharing her story to help educate people about meningococcal disease.  In April, 2015, she was honored by the National Meningitis Association with the T.E.A.M. Outstanding Service Award for her ongoing commitment to NMA’s mission.  She has testified to the Advisory Committee on Immunization Practices (ACIP) in support of expanded recommendations for meningococcal vaccines and testified to the Ohio House and Senate in support of a new meningitis vaccination bill which was signed into law in July, 2015.  Every Child By Two would like to thank Samantha for her passionate advocacy and her courage in sharing her story.

 

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