Since the death of our daughter from meningococcemia meningitis, I have read many stories from other parents who have experienced this tragedy and I have cried through each one. As with all the other families, I want to share our story to make you aware of the seriousness and deadly nature of this destructive disease. It is so deceiving because the symptoms mask the flu and, what is most devastating is that many parents (including us) were unaware of a vaccine that is available to help prevent this. Unfortunately, not many doctors promote meningitis immunization because of the rareness of the disease, although, its occurrences have increased 60% over the past several years. By making you aware of the symptoms and the vaccine, it is our hope that no other child or family will suffer the effects of this fast-moving illness. If we had known about the vaccine, our daughter would be celebrating life today.
Our beautiful daughter Nicole was born August 1, 1981 in Cedar Rapids, Iowa. She was 22 years old and had a brother, Chad who is four years younger. Nicki had a vivacious smile but was a very shy child who would hide behind her parents when spoken to. It was a struggle to get her to join different activities but she eventually outgrew some of her shyness and began to participate. In her early years, she played T-ball. In middle school, she enjoyed volleyball, basketball, tennis and played the flute in the band. She had also taken piano lessons for five years and won several first and second place trophies in competition. In high school, she limited the sports to just tennis – it seemed her main interests were boys and the telephone. In fact, one particular boy was her main interest for almost the entire four years.
Upon graduation, she enrolled at the local community college and worked part time. Her long time romance had dwindled and she began dating an old friend from high school. Nicki and Corey clicked right away. They did everything together and eventually moved into a home that Corey had just built. Graduation and finals were drawing near along with the pressure of finding full-time employment. While in the midst of finals, Nicki was fighting a cold and was a bit stressed out but also excited to have landed a full-time job after completing an internship. To relieve some stress, she went out with her friends on a Saturday night. Sunday morning she did not feel well and thus our nightmare began.
Nicki called us the morning of Mothers Day to say that she had a headache, sore throat, ached all over and had a temperature of 100.8°. We advised her to see a doctor but she felt it was the flu and just wanted to rest. We talked to her mid-afternoon and she said she had been vomiting and had some diarrhea but still did not want to see the doctor. How we wish we would have forced her to do so now. Early evening, Corey called and said that she was much worse and needed to go to the hospital. She fought us in our attempt to get her out of bed because of her body aches – it hurt just to touch her. In helping her out of bed, we noticed a purple spot about the size of a dime on her middle finger but she had no idea of its cause. She also pointed out another tiny spot on the inside of her elbow.
Nicki was very quiet and kept her eyes closed all the way to the hospital and, due to weakness, needed a wheelchair upon our arrival. Her color was pale and her face carried a blank expression. Once in the examination room, Nicki could not lay still, she was in constant motion with pain, her breathing was labored, her feet were very cold and the purple spot on the tip of her finger now engulfed her entire finger. The staff would not give her a blanket in fear of spiking her temperature. We were asked to leave the room so they could continue the examination.
After a period of time, the doctor told us that he suspected meningitis and wanted to do a spinal tap. He had worked on another patient seven months before with similar symptoms. The results of the spinal tap were negative and we were relieved but the doctor said that wasn’t necessarily good news. He then proceeded to tell us that he feared it was not viral meningitis but most likely bacterial meningitis, which was the worst type, and her chances of survival would be slim. We were in shock, how did this happen and why to our child? The doctor told us that they had been pumping her with penicillin ever since she arrived and would continue to administer aid to try and pull her through. We paced the hall and prayed while waiting for the chance to see her. Doctors and nurses were in constant motion in and out of the examining room and it seemed like hours would pass between verbal contacts with the various doctors that had now been called in.
Once they confirmed that it was bacterial meningitis, our world fell apart. This just couldn’t be happening. Nicki was ready to graduate from college and had a full-time job waiting. She had a boyfriend who loved her, a beautiful home and a dog that depended on her care. The doctor said that the next 24 hours would be the most critical and again stressed the dangers of this disease that had invaded her bloodstream so quickly. He also reiterated the fatality rate and that she had not shown any improvement. I’m sure now that in his mind he felt Nicki was not going to make it and he was trying to prepare us. They decided to give her morphine to quiet her restlessness and then finally let us see her. Nicki had no idea how sick she was and it was extremely hard to face her and not shown any emotions because Nicki is such a caring person, she kept telling us to go home and get some rest, that she would be okay. Our hearts just dropped to the floor. We noticed also that the purple rash had now spread to other areas of her body. We later learned that this rash (septicemia) is a result of the poison destroying her veins and the blood seeping out under the skin. We were then asked to leave again so they could resume treatment. I wish now that we would have insisted on staying with her but we honestly thought that she would pull through.
As we continued to pace the halls and doubled our prayers, time seemed to stand still. At one point, our spirits were lifted when told that they were preparing to send her to ICU, and then the unthinkable happened. The doctor stepped out and said we probably should call our pastor that she was not doing well. We were hanging on to dear life and it was slipping away. He disappeared behind the door again. Within the hour, the doctor asked us to come in because she was deteriorating rapidly. When we entered the room, Nicki’s eyes were beginning to roll back into her head and she was not responding to our voice or touch. She took one big breath and then no more. They immediately began CPR and shooed us out of the room again. After several attempts of reviving Nicki, the doctor told us they could continue CPR but that her heart wasn’t the main problem. No matter how many times they could restart her heart, the disease was overpowering it and shutting down her other organs as well. They eventually discontinued CPR and our precious daughter was gone just six hours after we had brought her in. She died within 15 hours of the onset of this relentless disease.
As with most other meningitis cases, we have no idea how she contracted this bacteria. She was with a group of friends the night before but none of them became ill. We suspect that since her immune system was weakened from her cold that she was more susceptible; or just possibly her life was shortened because God has better plans for her. The doctors told us not to blame ourselves for not seeking treatment earlier. Her symptoms mimicked the flu and she would probably have been sent home with some antibiotics. We can only hope that as time goes on and research and training improves, that doctors will be able to recognize and treat this disease immediately with positive results.
Through all this, we have met two other local families who also lost their children to bacterial meningitis. Actually, one of them is the case that Nicki’s doctor referred to seven months prior. It is unusual that all three kids lived within ten miles of each other, were close in age but did not know each other, and died within nine months of each other. The moms have since banded together for support and are campaigning at local colleges and high schools to make kids and parents aware of this disease. We have talked to the media and submitted articles to the school papers as well as the local newspaper. It is disheartening when families apply the old cliché “it won’t happen to us” and forego the lifesaving immunization.
Many days go by that we feel we are still in denial and that the empty hole in our heart will never mend. We are experiencing all the emotions that come this first year without her (Birthdays, Mother/Father’s Day, Thanksgiving, Christmas, etc.) and the next one is never any easier. The best we can do is to strengthen our faith by knowing that Nicki is watching from above and doing God’s work now and that one-day we will see her again. Our hearts go out to everyone who has experienced this ravaging disease. Please immunize your loved ones because there is no getting over the loss of a child. Nicki was a fun-loving, caring and devoted daughter and sister whose endless smile brought joy to those she touched. She was always willing to help, no matter what the task. Because of this, we feel God needed another special angel in heaven. We love you Nicki and miss you everyday!
Nicole Marie Evans