They lost their daughters to Meningitis B – Read Their Stories

21 Nov

Alicia and Patti both lost their daughters to meningitis B recently. They support Princeton University’s decision to recommend the meningitis B vaccine to its students in response to an outbreak. Their daughters were vaccinated with the current vaccine which does not protect against the B strain. They look forward to a time when vaccines are available against all active strains of the disease. We hope you read their stories.

Alicia’s Story:

My daughter Emily was 19 years-old when she contracted meningococcal meningitis. She was a sophomore at a small private liberal arts college called Kalamazoo College. She passed away on February 2nd of this year. Despite valiant efforts to save her life, she was declared brain dead within 36 hours of walking into the hospital complaining of a headache. They tried everything, including a craniotomy, to relieve the swelling caused by the disease. Nothing worked.

Emily had been vaccinated, but she had the B serogroup, which wasn’t covered by the vaccine. I was not aware that the current vaccines don’t prevent all strains of the disease. I take some comfort that I did everything in my power to protect her at that time. But, as a mom who lost my child to the B strain, I would have given anything for an opportunity to further protect Emily. I would certainly want my other children to have access to a vaccine that could protect them during an outbreak.

I don’t know how my Emily got the disease. The truth of the matter is that most cases of meningitis occur through exposure to an asymptomatic carrier.

It is so important for all students, faculty and families to learn about the symptoms of meningococcal disease and seek prompt medical attention. It is especially important because the infection can be mistaken for other illnesses. Emily started out with a headache. If I had known the symptoms I would have sent her to the hospital when she first complained of a headache. Emily’s headache was misdiagnosed for a migraine, which delayed treatment.

I got involved with the National Meningitis Association to help educate and protect other families.

Patti’s story:

In June of 2012, my beautiful daughter, Kim, was a healthy 17-year-old senior in high school – excited about her upcoming high school graduation and prom. She came home from school complaining of body aches and a temperature of 101. I called her pediatrician whose recommendation was to bring her to the office the next morning because it sounded to him to be possibly strep throat or the flu. As a mother and a nurse, I agreed with his recommendation.

When we woke the following morning, she told me she felt as though her “ankles were bleeding.” When I looked at her ankles there was a very small rash on one. The rash had purplish spots. I immediately took her to the pediatrician. By the time I got her there, she was lethargic and in pain and the rash starting appearing on other parts of her body. She also had broken blood vessels in one of her eyes. The doctor called an ambulance.

Kim was diagnosed with meningococcemia – meaning the meningococcal bacteria had invaded her blood. By the time she was admitted to the hospital, some of her vital organs (heart, lungs, kidneys) were already failing as they were attacked by the meningococcal bacteria via her bloodstream. The circulation to her extremities was very poor.

My daughter fought for her life over the next ten days. Even though she was treated immediately and aggressively with excellent care, she was eventually declared brain dead. If she had not been declared brain dead and survived, she would have undergone amputations of both hands and feet and would likely have been on kidney dialysis.

Kim didn’t have the classic symptoms of meningococcal disease just hours before going into the hospital. She didn’t have a stiff neck. She didn’t have a bad headache. She wasn’t sensitive to light. She didn’t have a rash initially. She wasn’t confused. She had body aches and a fever of 101. That’s it. AND she was vaccinated. I thought she was safe. But she contracted serogroup B which the current U.S. vaccine does not protect against. This bacteria is so aggressive and invades the body so rapidly. In my daughter’s case, quick medical intervention could not save her.

If I were the parent of a Princeton student, I’d be grateful my child had access to the serogroup B vaccine during this outbreak. As a parent who lost a child to serogroup B meningitis, I look forward to the licensure and hopefully broad availability of this vaccine.

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