Meningitis in your words

Kimberly's story

  • Date of illness: 01 Jun 2012
  • Location: USA
  • Categories: Group B meningococcal (MenB)
  • Relationship: Parent
  • Outcome: Bereavement
In June of 2012, my daughter Kimberly Coffey died from meningococcal disease - a vaccine-preventable disease. The reason simply being that we didn’t have a vaccine then for the specific serogroup of meningococcal disease she contracted. If there had been a serogroup B vaccine in 2012, I believe my then 17-year-old daughter would be alive today. She was up to date on all of her vaccines, including meningococcal disease, but the current vaccine did not protect her against serogroup B. It only protected her against four serogroups – A, C, W & Y.

After returning home from school one day, Kim felt achy and had a fever of 101. As a nurse, the possibility of meningitis did come to my mind, so I asked if she had a stiff neck or a headache. She said she did not. I also knew that she had been vaccinated against meningitis. I called the pediatrician, and he said it sounded like the flu and asked me to bring her into the office the following morning.

The next morning, Kim said, “Mom, my entire body hurts from my eyelashes down to my toes.” She also said, “I feel like my ankles are bleeding.” I pulled back the sheets and saw three tiny purplish dots on one of her ankles. (And as it turns out she was exactly right – her capillaries were literally bleeding beneath her skin near her ankles.)

By the time we arrived at the Emergency Room, a purplish rash had appeared on her lower back, she was in tremendous pain and was extremely weak. She became very sick so quickly! The doctor told me she suspected Kim had meningococcemia. When she explained that it’s bacterial meningitis but in her blood stream, I told her Kim had been vaccinated for meningitis and that she couldn’t possibly have meningitis!

Kim’s heart and kidneys were failing within two hours of being in the hospital. I watched helplessly as the purplish rash rapidly covered her entire body. All 10 fingertips and 10 toes were bright purple and very cold. She was losing blood flow to her extremities because she was in septic shock. Her heart rate was extremely high and her blood pressure was extremely low.

Two days later, meningococcal disease was confirmed from her blood cultures.  A few days later, the doctor explained to me that there was a serogroup of meningococcal disease not covered by the U.S. vaccine – serogroup B. He assured me that I had done everything I could have to protect her. By then, her fingers and toes were almost completely black from lack of circulation. 

A CT scan of her brain showed impending brain herniation, and the doctors prepared us for the worst. My son Chris was in Basic Training with the U.S. Army and wasn't allowed to leave to visit his sister. But on Kim’s eighth day in the ICU, I had to tell him it was time to come home to say goodbye to his little sister.

On the ninth day in the hospital, a final nuclear scan was done to determine with certainty that there was brain death. Later that day after Christopher arrived, we all said our goodbyes to our beautiful Kim, and her life support was stopped.

Kimberly died on June 15, 2012, just three days before high school graduation and was buried in her beautiful prom dress two days before she was to attend prom.

We know that Kim would want us to learn from her and share her joy for life – to live life fully and always find ways to laugh. Peace, love and happiness describe her presence. Kim led a life full of love and fun – tragically cut short. Kim’s dream was to be a pediatric nurse. Her compassion, empathy, caring and love for children would have made her an excellent pediatric nurse. She will live on forever in our hearts and our souls.  We’ll continue her legacy by promoting awareness of meningitis.

As a nurse, I didn’t know that the meningococcal vaccine did not protect against all of the common serogroups in the USA. As a parent, I had a false sense of security that my daughter was fully protected.

I have found that there is little knowledge of this disease among the general public as well as in the medical community. Many people are familiar with the term meningitis and consider it an infection affecting only college students. Meningococcal disease affects all ages – including infants and the elderly.  Most are not aware of the real consequences of this disease such as death, limb amputations, and life-long illnesses. 

I speak at schools educating students and parents about meningitis. And in the near future, I plan on speaking to college nursing students.

In February, 2015, I gave public testimony before the CDC’s Advisory Committee on Immunization Practices (ACIP) urging them to add serogroup B vaccines to the recommended routine vaccines - as are the other four serogroups. The committee vote at that time was a recommendation to use the two new B vaccines in high risk eligible populations only - for example, in an outbreak situation. In June, 2015, ACIP gave serogroup B vaccines a permissive recommendation – meaning they are available, but they are not a routinely recommended vaccine. It is my hope that this will change in the near future.

As a mother and an advocate for the prevention of meningococcal disease, Patti was instrumental in the passage of The New York State Meningococcal Immunization Bill into Law. The New York State bill is aligned with CDC recommendations and adds meningococcal immunization to the list of immunizations a child would receive before entering the 7th grade and before entering the 12th grade. 

The bill conforms with existing CDC recommendations and any future recommendations (for example, possibly serogroup B vaccines). The New York State meningococcal immunization requirement will go into effect September 1, 2016. 

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