In Illinois, barring religious or medical exemptions, your child is required to get a meningitis vaccine at the age of 11, and again at 16. And while this does protect them against most strains of Meningitis, it does not cover one potentially deadly form of the disease, Meningitis B. It's one serogroup of the bacterial infection that can have devastating outcomes including loss of limbs and death. It's something that forever changed one Coal City family's world years ago.
These days Judy Miller keeps busy helping babysit her three year old granddaughter, Maeve. And while the little girl's laughter is irresistible,. there was a time when smiles in their home were few and far between. Miller says her daughter, Beth (Maeve's aunt) was just 19, a sophomore at Eastern Illinois University, when she complained of flu-like symptoms.
"Tuesday I called her, she had a sore throat and she wasn't feeling good, and I said, 'Well, then go find a doctor in town and go to him,' but she wouldn't do it. And by Wednesday night she was screaming in pain for her roommates to take her to the ER," Miller shares.
She says when Beth got to the hospital doctors quickly determined she had Meningitis. The CDC describes Meningococcal disease as :...a serious illness caused by a type of bacteria called Neisseria meningitis. It can lead to meningitis (infection of the lining of the brain and spinal cord) and infections of the blood. Meningococcal disease often occurs without warning - even among people who are otherwise healthy." At the time, in 1999, it wasn't something the Millers had heard of before, and because that vaccine wasn't a requirement at the time, Beth hadn't been vaccinated. So, as it quickly spread through her system her family rushed to be by her side, but by the time they arrived, she'd taken a turn for the worse.
"She didn't really know us. We walked in the room and all she said was, 'Mom? Dad?' and her boyfriend 'Bill,' who was down there. And that's the last thing she ever said, and after that she went into a coma.
And sadly, within 36 hours of first showing symptoms, Beth was brain dead, and was ultimately taken off life support.
"It's always there, you always think about it. You always think about it. No parent should have to do that, no parent," Miller laments.
Although it's been 18 years since Beth passed away her memory lives on in several ways. Her family was able to donate her organs to three people in need. And, after her death they started a foundation in her name. They hosted a clinic on campus getting 700 kids vaccinated. And they lobbied to get a law passed to make sure all state colleges make sure the vaccine is available and educate students and their parents on the symptoms of meningitis. Since then, the family continues to offer vaccines to anyone who is interested at the Grundy County Health Department, and Miller stresses that's not limited to those who live there in the county.
That includes the vaccine for most meningococcal strains (the one required by state law,) along with a new vaccine for Meningitis B (offered by two drug companies under the names Bexsero and Trumenba.)
(More information on the vaccine here: http://www.nmaus.org/disease-prevention-information/serogroup-b-meningococcal-disease/serogroup-b-vaccines/ )
As the National Meningitis Association explains, Meningitis B vaccine was just approved by the FDA in late 2014. And that approval came in the midst of five outbreaks at college campuses in the U.S. between March of 2013 and February 2016. And the Midwest has seen cases over the years, too, as recently as last month. http://www.nmaus.org/disease-prevention-information/serogroup-b-meningococcal-disease/outbreaks/
The CDC has given the new B vaccine a soft recommendation, stating teens and young adults "may" get it, although they do recommend it in certain cases. https://www.cdc.gov/vaccines/hcp/vis/vis-statements/mening-serogroup.html
As for UnityPoint Pediatric Nurse Practitioner Barb Johnston, she recommends the new vaccine for her high school and college age patients.
"It is available to anyone, any parent, when they come in for their well-child, you can ask about this," she explains.
However, she also notes that not all parents know to ask.
"The American Academy of Pediatrics actually doesn't have a strong recommendation for these at this time which is probably why you haven't heard about it," she continues.
Johnston says that could very well change as more long-term data on the newer vaccines becomes available. But for now she say's teens and young adults need to know they face an increased risk.
The CDC says "meningococcal disease can spread from person to person through close contact (coughing or kissing) Or lengthy contact, especially among people living in the same household," which also applies to those living in close quarters such as dorm rooms or military barracks. As for who else is at risk?
Per CDC, Those at Risk:
However, meningitis can strike people of any age, as one Peoria family discovered. Angie Maughan says her son, James, was two when he suddenly fell ill.
"He woke up that morning and was fine. We went to church. By the time church was over he had a fever," she recalls, adding thought that by bedtime he developed small spots that quickly grew to the size of a softball. She rushed him to the hospital. There, Maughan was told her baby boy had meningitis B. But even then she didn't realize the severity of the situation.
"It wasn't until the nurse was in the room, she was talking to me and she said, 'Did you ever get ahold of your husband?' And I said, 'Yeah, he called back the minute you were out of the room and I told him to keep working.' And she looked at me said, 'Oh no honey, you need to get your husband here right away.'"
And with that James slipped into a coma, just 15 hours after spiking a fever. And there he stayed for 3 and a half weeks before the family finally got the miracle they'd been praying for, although he didn't come out unscathed.
"In the end we were blessed and very very lucky that to save his life he only ended up having his right hand and left foot amputated and his middle finger of his left hand," she explains.
Now, four years later, life is back to normal for the Maughan family, or at least a new kind of normal. James is an active little boy who manages to play sports and wrestle with his dog and older siblings. And while the meningitis B vaccine isn"t recommended for younger children yet, his family hopes one day it will be. And in the meantime, they urge those who can get it, do so.
"Whatever level they are recommending whatever age they are recommending it's you don't understand that something like this still exists in our world until it hits your family," Maughan emphatically states.Meningitis is still considered to be rare. The CDC reports that the U.S. saw an average of 4,100 cases and 500 deaths each year between 2003 and 2007. And the fact that it is relatively rare has some critics wondering if drug makers are stoking parents' fears to make a profit. https://www.nytimes.com/2017/09/07/business/meningitis-b-vaccines.html
But profit or not, Judy Miller believes it's worth it.
"The vaccine might not be 100%, but it could've helped keep my daughter from dying."
And she's not alone. for more on a previous story we aired involving a New York Mother who lost her high school daughter to Meningitis B, http://www.week.com/story/36743169/special-report-preview-a-deadly-strain-one-mothers-nightmare
The most common symptoms include:
Not recommended for:
If you have any severe, life-threatening allergies.
If you have ever had a life-threatening allergic reaction after a previous dose of serogroup B meningococcal vaccine, or if you have a severe allergy to any part of this vaccine
If you are pregnant or breastfeeding.
Risks of a vaccine reaction
With any medicine, including vaccines, there is a chance of reactions. These are usually mild and go away on their own within a few days, but serious reactions are also possible.
Any medication can cause a severe allergic reaction. Such reactions from a vaccine are very rare, estimated at about 1 in a million doses, and would happen within a few minutes to a few hours after the vaccination. As with any medicine, there is a very remote chance of a vaccine causing a serious injury or death. Look for anything that concerns you, such as signs of a severe allergic reaction, very high fever, or unusual behavior. Signs of a severe allergic reaction can include hives, swelling of the face and throat, difficulty breathing, a fast heartbeat, dizziness, and weakness. These would usually start a few minutes to a few hours after the vaccination.