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How Children with Immunocompromising Conditions Are Navigating the Pandemic

Amy Paturel
March 4, 2022
High school students and teenagers go back to school in the classroom at their high school. They are required to wear face masks and practice social distancing during the COVID-19 pandemic.

When Richard Christy, 59, comes home from work as a pilot for Delta Airlines, he moves into the family’s camper parked outside their Las Vegas home.

Though fully vaccinated, boosted, and symptom-free, Christy stays in the camper for 3 days and tests himself for COVID twice before joining his family. Then the cycle repeats when he pilots his next flight.

The reason? Richard’s wife, Cindy Christy, has primary immunodeficiency, or PID. People with PID are born with genetic abnormalities that compromise their ability to make fighter T-cells, helper B-cells, and antibodies. The end result: A weakened immune system that is vulnerable to infections of all types.

All three of the couple’s daughters inherited PID in varying degrees, but their youngest daughter, Louisa, 13, has been hit the hardest. On her first birthday, she weighed only 14 pounds. In addition to PID, Louisa suffers from ankylosing spondylitis, an autoimmune condition that causes her joints to flare up such that she can’t move or walk during those times.

“The medications Louisa takes to manage ankylosing spondylitis suppress her immune system, which is already weakened from PID,” Cindy says. “When Louisa has a flare-up, she is in so much pain, we have to massage her, give her a hot shower, and lather her up with anti-inflammatory gels and creams before her joints begin to cooperate.”

With two immunocompromising conditions, Louisa faces a greater threat from COVID-19 than most other kids. Rising rates of infection, coupled with low vaccination rates among children and teenagers, have left families like the Christys especially vulnerable, both to infection and bad outcomes. According to the latest data from the Centers for Disease Control and Prevention (CDC), less than one-quarter (22%) of 5- to 11-year-olds and just 55% of 12- to 17-year-olds are fully vaccinated.

What it means to be immunocompromised

Adults and children can be immunocompromised for a variety of reasons. Some may have weakened immune systems from conditions like PID. Others may take medications like chemotherapy and corticosteroids that weaken the immune system.

“Unfortunately, when the immune system is suppressed for any reason, infections and viruses are more likely to take hold,” says Jaime Fergie, MD, director of infectious diseases at Driscoll Children’s Hospital and medical director for the Global Institute for Hispanic Health.

According to the CDC, about 3% of children in the United States are immunocompromised. Recent research has found that children and adolescents who have moderate to severe immune deficiencies, including PID, may be at increased risk of developing severe disease from COVID-19.

That’s why Michelle B. of Wedgefield, South Carolina, whose son, Carl, has PID, has developed protocols for her family to follow to reduce the odds that any one of them will be exposed to COVID-19 — or any other illness. Michelle’s two children are home schooled, she is a stay-at-home mom, and they all limit their activities outside the home. She leaves her kids in the car when she runs into the grocery store and instead of meeting at a buddy’s house on the weekend, her boys play X-box with virtual friends from the sofa.

“When my husband returns from his job as an essential worker, he enters through the back door, strips down and throws his clothes in the washing machine. We spray him down with Lysol and then he heads straight to the shower — and that routine continues to this day,” she says.

Vaccination protocols for immunocompromised children

A recent study shows that adults who are immunocompromised do not produce the same response to vaccines as adults who are not or don’t have these conditions. While the data is not yet in, researchers expect children with weakened immune systems to follow suit. That’s why the CDC recommends that children with immunocompromising conditions get three full doses of the COVID-19 vaccine — plus another dose 5 months later.

“Children whose immune systems are suppressed don’t develop the same level of protection after vaccination as children without such issues do,” explains Fergie. “The third dose is not a booster; it’s an attempt to deliver the same level of protection as children who are not immunosuppressed achieve with only two doses."

Kids who are undergoing a bone marrow transplant need to be revaccinated from scratch after treatment since their immune systems are repopulating with brand new cells.

Fortunately, no one in Michelle’s household has gotten COVID-19, though they’ve been exposed multiple times, and they’re grateful that people are getting vaccinated.

People don’t realize that they're not just getting the vaccine to prevent themselves from getting COVID; they're getting it to protect other people

-Cindy Christy

Protecting immunocompromised kids

While it’s natural for families who have immunocompromised children to fear going out into the world, it's important that they stick to their medical appointments and get the medications they need to keep their immune systems working.

During the pandemic, 13-year-old Katie Librizzi has relied on home health for her monthly infusions instead of going to the clinic.

Katie has common variable immunodeficiency, meaning she’s missing a key part of her immune system. To combat the pneumonias and skin infections that take hold in her weakened system, Katie has been getting infused since first grade. Now in eighth grade, Katie has remained home most of the past two years to avoid catching COVID-19.

“She’s susceptible to everything,” says Katie’s mom, Laura. “If someone is sick within 20 feet of her, she gets that infection. She’s constantly on antibiotics and when she gets sick, it takes her longer to recover. No one is allowed in our home unless they’re vaccinated and masked. We have hand sanitizer everywhere and we maintain physical distance as much as we can.”

This is key.

“In addition to doubling down on protective measures that you know work, it’s important to insist that everyone around an immunocompromised child be fully vaccinated — and wear masks since COVID-19 transmission happens, even among people who are asymptomatic,” says Dean Blumberg, M.D., a pediatric infectious disease expert at the University of California Davis.. “Friends and family members who are frequenting bars or restaurants, even if they’re vaccinated, have a higher risk of developing asymptomatic COVID. So they really need to be religious about wearing their masks and maintaining protective measures when they’re around immunocompromised kids.”

If your child is severely immune suppressed, it may be important to keep them home and away from other people. But in every case, your best bet is to discuss proper precautions with your child’s physician.

“People don’t realize that they're not just getting the vaccine to prevent themselves from getting COVID; they're getting it to protect other people,” Cindy says.

As for the Christys, they continue to advocate for people who have immunocompromising conditions and for COVID-19 vaccination. Everyone in their family is vaccinated and boosted, and Louisa is a proud proponent of COVID-19 vaccination at her junior high school.

“When my teacher asked all of the students in the class to raise their hand if they’re fully vaccinated, only a few kids raised their hands,” Louisa says. “Me? I raised my hand and said, ‘I’m about to get my fourth dose.’”  

While navigating the COVID-19 pandemic continues to be challenging, the Christy family is soldiering on, pursuing activities that bring them joy. Two of Cindy’s daughters are musically gifted. One even sang at the White House twice. And Louisa? In addition to attending school in person full time where she wears an N95 mask, she acts as a “junior child life specialist” at the clinic where she gets her monthly infusions. “I put together these goodie bags with activities and different things for kids to do while they’re getting their hours-long infusions,” Louisa says. The goal, she says, is to make life better, easier, and more enjoyable for others.


 

Immune Compromising Conditions At A Glance

Everyone’s immune system can be weak from time to time, but people who are immunocompromised have immune systems that are moderately or severely impacted due to illness, genetics, or even life-saving therapeutics.

Examples of treatments or conditions that can lead to someone being immunocompromised include:

  • Cancer treatment or recent chemotherapy
  • Rheumatologic disease
  • Gastrointestinal disease
  • Organ transplant recipients who are taking medication to suppress the immune system
  • Moderate or severe primary immunodeficiency
  • Current use of medications that suppress the immune system, such as high-dose steroids
  • Severe burns