Real People, Real Stories (Meningococcal Disease)

The call from the doctor came at about 2:00 PM. They suspected that my 21 year old college student daughter had meningitis and she was being taken to the Emergency Department.

She had a fever of 103, a stiff neck, and a rash. My first reaction was, “No way can she have meningitis, she has been vaccinated twice”.  I called the doctor back and told her the dates of the vaccinations, and she said that it didn’t matter, and they were taking her to the ED.  My husband and I quickly got into the car to drive the 30 minutes to the ED, all the while I was thinking it had to be strep throat. When we arrived, our daughter had received an injection of fentanyl for her pain, and her speech was deteriorating. Over the next 30 minutes our daughter went from conversing regularly to babbling in an incomprehensible language. Then, she lost the ability to lift her hips, and was on all fours crawling on the table while babbling.

The doctor came in, said they had to intubate to get her for a CT scan. She was given a sedative, intubated, and quickly moved for the CT scan. My husband and I were beyond scared, and had no idea what was going on. When the scan was reviewed, it was determined that she had swelling in the lining of her brain, and meningitis was once again introduced as the source of the swelling. The ED physician consulted with the infectious disease doctors at the hospital, and our daughter was given a port in her groin because they did not want to give her anything that might cause an infection above her waist. She was started on powerful antibiotics and an antiviral, and was placed in the Neuro Science ICU (NSICU) to await a lumbar puncture by a neurologist. Testing her spinal fluid would determine of her infection was bacterial or viral meningitis. There was no way that the seriousness of her disease had even begun to sink into our brains.

When we arrived at the NSICU, the attending physician told us our daughter was critically ill; her fever was now 105.8 and she was in a medically induced coma. We spent the night by her side,and in the morning the neurologist told us that we might want to call our family. We had our son fly in from Minneapolis, and her grandparents fly in from Florida. That day, at about 4 pm the infectious disease physician told us that she had Neisseria meningitis bacterial meningitis. This strain is not covered by the meningitis vaccine currently used in the United States. We were told that there was nothing we could do but pray and wait to see if her body fought the infection. They told us that the odds were not with us because of the infection was in her blood and in her spinal fluid.

It took one day for her body to beat the infection in her blood, and a couple of days to fight the infection in her cerebral spinal fluid. She had to have a ventricular catheter in her brain to relieve the pressure and was extubated after 5 days. It has been one month since she was hospitalized and spent two weeks in the ICU. She was then moved to a rehab hospital and is walking with a cane. She has some hearing loss and weakness, but she is strong and recovering… we are one of the lucky ones. The same day she was diagnosed, a student died at the University of Hartford from the same strain of meningitis.

I wanted to share this story because young adults are very vulnerable, and any time they run a high fever, they should seek help. The meningitis vaccine that our young people are receiving does not cover this strain of meningitis, it is only available in Europe. We have to encourage the FDA to get this vaccine through the system so that more people will be covered.

It is also very important to get antibiotics started quickly when meningitis is suspected. I think because of her fast diagnosis, and rapid start of medications, our daughter’s life was saved and continues to make a strong recovery today.