Earlier this week we shared some perspectives on the often overlooked impact of meningococcal disease on friends and family members. We have one more story that we think everyone should hear.
T.E.A.M. member Amy Aiken was diagnosed with the flu in October 2011. That night, she started seeing spots and knew something was seriously wrong. She called 911 and lost consciousness in the ambulance. Shortly after her arrival in the ER, Amy’s kidneys failed and she was immediately put on dialysis. It turned out that Amy did not have the flu, she had meningococcal disease.
Amy asked her mother Jean, now an NMA M.O.M., four questions in the course of her illness. Questions no one else should ever have to ask, and no parent should have to answer.
The first thing she asked me when I walked into the ICU was— “Did I do the right thing?” By that she meant calling 911. I said, “Oh, absolutely!” It saved her life.
The next question was “Will I get better?” She asked this right after the doctor told me that she probably had an hour to live. But I have faith in an afterlife, and I don’t see death as a bad thing. So I was able to say “Amy, I guarantee you, you will get better.” Either she would live or be in heaven. When I made that guarantee, I literally felt her whole body relax. But I’ve always felt a little guilty. Did I lie to my daughter? It was our last conversation for two months. She was in a coma after that.
While she was in the coma we had to sign the paperwork for her feet to be amputated. The next question—the hot potato question—was how do we answer when she asks, “What happened to my legs?” I thought the doctors would handle that one, but they made it clear they did not want to be the ones to tell her. Amy never actually asked that question. Later she told me she just sensed, more than anything, that her feet weren’t there. She said she couldn’t look down for two weeks. Finally one day, she looked me in the eye, and I looked her back in the eye, and I just—kinda nodded, “Yes, I know, dear. I know they’re not there.”
And the last question—and this is the one I dreaded the most was, “What made you think I would want to live this way?” I was so thankful that I had an answer when the question came. While she was in a coma, a friend directed me to some videos of survivors. It was amazing to see others who had dealt with amputations and were living. They were happy and I knew there was life after this.
The Aiken’s did not know that meningitis is potentially vaccine-preventable. Even if Amy had been vaccinated, the vaccine available at the time wouldn’t have protected her against serogroup B, which she had. Now Amy and Jean are working to ensure that all teens get A, C, W, Y and #BVaccinated.
This post is part of the #BVaccinated series based on NMA’s report, Beyond the Science: Putting a Face on Meningococcal Disease. As national policy regarding serogroup B meningococcal vaccination is discussed and implemented, NMA urges all those involved to consider these perspectives. We believe that routinely vaccinating our children against this disease is the right thing to do.