Archive | November, 2020

Reflections from a mother and son: Helping other families spot the danger that took ours by surprise

18 Nov

By Paige Kach and John Kach

Paige’s story: a mother’s fears.

Everything was going so well right up until our nightmare started. It was the spring of my son John’s first year of college, and with basketball practices, schoolwork, and an active social circle, his life was full. That all came to a halt one Friday night when, without warning, his fever spiked to 105 and he was rushed to a hospital. I got the call from an ER physician: my perfectly healthy son had contracted a rare and often fatal form of bacterial meningitis – meningococcal disease. His organs were shutting down. Doctors induced a coma and worked to save his life. For the next six weeks, my husband and I stayed in the hospital waiting room, desperate to do anything to protect John.

Because that’s what parents do – protect their children. As parents have taken steps to protect their families during the pandemic, today’s kids are missing out on many of the experiences that are part of a healthy childhood.

Many families have also skipped or postponed annual checkups and other doctor’s appointments – and as a result, children nationwide have missed out on their scheduled vaccines, potentially increasing the danger of other deadly diseases. In fact, pediatric vaccination rates have dropped nearly 40% in Florida since March due to the COVID-19 pandemic.

Parents of teens in should be aware of the risks of meningitis. Meningococcal disease, which includes meningococcal meningitis and meningococcemia, is a rare but potentially deadly bacterial infection. Anyone can get these diseases, but teens and young adults are at increased risk for infection. When the infection sets in, it can progress rapidly, claiming or forever changing a life in as little as one day. Even with treatment, up to 15% of those who catch it will die; 1 in 5 who survive will live with permanent disabilities afterwards. The consequences can include hearing loss, brain damage, kidney damage, or amputations – like the ones John suffered, losing parts of both hands and both his legs below the knee.

Meningococcal disease spreads through respiratory and throat secretions, like coughing or kissing – it is easy to see why teens and young adults are at heightened risk. They gather in close quarters, like on school trips, in camp cabins, in dorms or small apartments, or in military barracks, and gather in crowded settings, where the risk of transmission can be higher. While we don’t know how social distancing guidelines will change over the coming months, we do know that these typical adolescent behaviors will eventually start up again.

Fortunately, meningococcal disease can be effectively prevented with a simple vaccination regimen – the Centers for Disease Control and Prevention (CDC) recommends that the first dose of the MenACWY vaccine be given at age 11-12, with a second dose at age 16 to provide robust protection during teen and young adult years. The CDC also recommends that parents discuss the Meningitis B vaccine with their child’s healthcare provider, as the B strain has caused recent outbreaks on college campuses.

John’s story: A son on a mission.

When I woke up from that coma, I didn’t have much sense of what had happened to me – the story came together in pieces. Even as I was learning the toll the infection had taken on my body, I was more upset to see how much emotional strain it had put on my family. I did all I could to tell them I was going to be okay. It was a promise I was making to them. Every day, when I was doing the work to heal and recover, I was driven by that promise. I knew they needed me to be as healthy as possible, and after all they had done for me, I wanted to do that for them. I’d had enough of being the son they worried about. I wanted to be the son they smiled about again.

For 20 years now, I have lived with the consequences of meningococcal meningitis. On top of the impact it has had on me – losing my legs and fingers, about 15 surgeries, many severe blood clots, arthritis, a kidney transplant – I see how it devastates whole families. I still try to protect my own parents from those effects. When I found out I needed that kidney transplant, I avoided telling my parents for months because I didn’t want the news to interfere with a dream trip for my mom. Of course, once they got back and heard I needed a kidney, my mother donated one of hers.

As I was doing the work to recover, I also made a commitment to share my story. I trained to become an advocate for the National Meningitis Association (NMA). My mom and I both work with the NMA to make sure families understand the risks of meningococcal disease – because too many kids are not protected.

Even before the pandemic, it was just too common for teens to miss the critical second dose of the MenACWY vaccine; as many as half did not receive it. That second dose is important to give 16-year-olds a better chance at being protected from this potentially deadly disease. It will protect them now, and it will continue to do so when life begins to return to normal. I also hope that parents and their teens will ask their health care provider about MenB vaccination when they get that second dose of MenACWY.

The success of vaccines has made it easy for us to not think about devastating diseases that would otherwise sicken and even kill healthy teens. Through my work with NMA I’ve learned about other vaccines adolescents need to help them from other diseases, including Tdap, HPV and, for everyone, an annual flu vaccine. Hopefully my experience will encourage parents to call their child ‘s doctor to make sure they are up to date on all their vaccines.  These conversations could potentially save lives.

Before I went away to college, my doctor recommended that I get vaccinated for meningitis when I got to campus. Between schoolwork, sports and my social life, I never got around to it – and I paid a hefty price. Please, talk to your child’s doctor about all of the vaccines they need at age 16. Even as adolescents are stepping into adulthood and meeting major milestones like living away from home, they still need their parents and caregivers to look out for their health.

Visit nmaus.org or The16vaccine.org for more information.