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.
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.
As I said goodbye to my sweet daughter in that hospital bed, I made her a promise. As I kissed and hugged my little girl for the last time, tangled amongst the tubes and the wires that were coming out of every part of her, I told her to go and be at peace. I said I would be ok, and that I would be her voice. I promised her that I would figure out how this could happen. How could she get this disease when I thought I had protected her? I told her I would make sure this could not happen to other people.
For the first few months after Emily died, I walked around in a fog. I continued to ask, “Why me?” Finally one day instead of asking “Why me?”, I said “Because it’s me”, and it was time to fulfill the promises I had made my precious daughter on that cold February morning. That was the day The Emily Stillman Foundation was born.
I learned that I had, in fact, protected my daughter with the only meningococcal vaccine that was available at that time. She had received two doses of the quadrivalent meningococcal conjugate vaccine (MCV4) as recommended, (with the first dose at age 11, and a booster dose at age 16). However, that vaccine only offered protection against serogroups A, C, W and Y – NOT B. At the time of Emily’s death, there was no vaccine available in the United States to offer protection against Serogroup B. This was right around the time of the Princeton and the UCSB outbreaks, which drew national attention to this particular serogroup, and encouraged the FDA to allow the use of a MenB vaccine that was in the process of undergoing approval as part of an emergency accelerated release status. I learned that serogroup B meningococcal disease was not as rare as some people think, and most people only hear about the outbreaks and not the many single cases that occur all over the world. I learned that my daughter had died of a vaccine preventable disease because the vaccine was not yet licensed or approved at the time of her death, and therefore not available to protect my daughter.
Now that I am more active in the vaccine advocacy arena, it concerns me that many healthcare providers are still unfamiliar with the availability of the MenB vaccine. Since my daughter died, two MenB vaccines have been licensed and approved by the FDA in late 2014 and early 2015. At the June 2015 meeting of the Advisory Committee on Immunization Practices (ACIP), the following vaccine recommendation was made
A serogroup B meningococcal (MenB) vaccine series may be administered to adolescents and young adults 16 through 23 years of age to provide short term protection against most strains of serogroup B meningococcal disease. The preferred age for MenB vaccination is 16 through 18 years of age.
With the way this recommendation is worded, as more of a permissive recommendation, many providers may not be routinely offering MenB vaccines to their patients. This means that it is up to The Emily Stillman Foundation, along with other immunization awareness initiatives like The Vaccinate Your Family campaign, to educate parents about MenB vaccines. Otherwise, parents may remain unaware of the availability of these vaccines. They may believe, like I did, that in getting their child the quadrivalent meningococcal conjugate vaccine (MCV4) that is often required for schools and colleges, that they’re doing their part to protect their children from all the various serogroups of this dangerous and often deadly disease. But unless parents are also requesting the MenB vaccine, that is not the case.
The release of our MenB ForeverEmily Public Service Announcement is my emotional attempt to educate the public about the importance of “complete and total” protection against all serogroups of meningococcal disease. Complete and total protection means both recommended doses of the conjugate vaccine MCV4 (with the first dose at age 11-12 years of age and a booster dose at 16), as well as a complete series of either of the two available MenB vaccines which are recommended between 16-23 years of age, but preferred between ages 16-18.
I know this video is very hard to watch. Trust me when I say it was even harder to film, and hardest yet to live through. But it is an important message, with a strong call to action. As we say at The Emily Stillman Foundation, “Get Committed, Get Educated, Get Protected, and Get Vaccinated”.