In many ways, Jennifer Ivan’s household has been preserved in time – April of 2020, to be exact. Her Fort Collins family of four is still isolating like it’s the first weeks of the pandemic lockdown. Ivan still has her groceries delivered. The self-described extrovert hardly leaves the house. Her family hasn’t gone to church or eaten in a restaurant for more than a year.
“Life is very much at home,” she said.
Even as COVID-19 vaccines are rolling out in Northern Colorado and the state continues to loosen restrictions, the Ivans are keeping their guard up because their 3-year-old son, Ethan, has Down syndrome, a condition linked to immune dysregulation that makes him more susceptible to diseases like COVID-19.
So, although COVID-19 cases are generally down in the state and more people are starting to enjoy gatherings, travel and nights out again, families of children with immune system complications, like the Ivans, find themselves left out of the party.
“With Ethan, we don't know what could potentially go wrong,” Ivan said.
In general, children do not get severely sick from COVID-19. But, according to Joaquin Espinosa, director of the Linda Crnic Institute for Down Syndrome at the University of Colorado, it’s not yet clear if that rule holds for children with medically complicated conditions like Down syndrome.
“We don't have a lot of data on the very young pediatric population,” he said. “But the prediction is that we will see higher rates of complication even at the younger ages among those with Down syndrome.”
While adults who are considered high risk can now protect themselves by getting vaccinated, there is not a vaccine for children under the age of 16. So until a shot is available for 3-year-old Ethan, his family will continue lying low.
Down syndrome increases risk
For adults, the data is much more established. Recent studies – including one published in October in the Annals of Internal Medicine – have shown that adults with Down syndrome are four times more likely to be hospitalized for COVID-19 than the general population, and 10 times more likely to die.
Espinosa explained the increased risk in stark terms. “Adults with Down syndrome in their 40s have a risk equivalent to typical people in their 80s,” he said. “So having Down syndrome adds 40 years to your birth certificate when it comes to risk of severe COVID-19 symptoms.”
Even so, advocates across the country have struggled to get their states to include those with Down syndrome in the early phases of the vaccine rollout. The Global Down Syndrome Foundation was instrumental in lobbying the Centers for Disease Control and Prevention to recognize the condition as a high-risk factor for COVID-19 last December. But not all states have followed suit.
In Colorado, adults with Down syndrome became eligible for vaccination on March 19, when the state moved into vaccine phase 1B.4.
High-risk children remain unprotected
But vaccine phases are beside the point for high-risk children. Pfizer’s vaccine is approved for age 16 and up. The Moderna and Johnson & Johnson vaccines are limited to 18 and older. All three companies are running trials of their vaccines in younger children, but those results are likely months away.
That leaves high-risk children unprotected for the foreseeable future, says Michelle Sie Whitten, president of the Global Down Syndrome Foundation. “That's really where I think the rub is,” she said. “You have a child who is under 16, who has a lot of medical conditions and you are like this child is very high risk. I need the vaccine. And yet the science isn't there yet to say that it's going to work in children.”
And that’s why Jennifer Ivan and her family are looking at many more months before the light starts showing up at the end of their tunnel.
At the same time, some risks can’t be avoided.
Ivan says that Ethan has always had developmental delays but has benefited greatly from early intervention services that have followed him since infancy, including regular weekly sessions with a speech therapist, an occupational therapist and a physical therapist.
In December, Ethan turned 3. That’s the cut-off age for Colorado’s early intervention program. In the middle of a pandemic, Ethan’s access to all of those services transferred from his home to public preschool. Ivan felt she had no choice but to send him to school.
“It was like rolling the dice in a game that we didn't want to play,” she said. “but we kind of had to because … at the end of the day, we can't risk him not developing. He's already behind.”
A first line of defense
Sending Ethan to school was a difficult decision for the Ivans – one that many families in a similar position have been forced to make. And its why Whitten says parents of children with Down syndrome and other immune-compromising conditions have been overlooked when it comes to vaccine prioritization.
Whitten said that parents of immunocompromised children are “very concerned about their child being an incredibly high risk. If their child got COVID with their respiratory issues, their fear is (the child) won't make it through COVID.” She advocates for bumping the parents of those children up in the vaccine prioritization line. “Vaccinating parents is the best line of defense if you can't get your child vaccinated,” she said.
Whitten is far from alone in advocating for the best line of defense argument — sometimes described as “cocooning” high-risk patients. But to date, there just isn’t data that backs it up. While the available vaccines are proven protection from COVID-19, there is no definitive information about whether vaccinated individuals can still infect others around them.
Protecting the parents
Demand for vaccines is high among families with immunocompromised children, according to Children’s Hospital Colorado chief medical officer Dr. David Brumbaugh.
“We've had to have tough conversations and say, look, we understand where you're coming from. We are advocating for you. We agree. But … the state is balancing a lot of other prioritization needs,” he said. “They're scared for their kids because they're scared that they personally are going to get sick. And … if they're sick, how do they protect their child from COVID if they're not vaccinated?”
That’s why experts like Brumbaugh still believe it’s a good idea to prioritize parents of immunocompromised children for vaccination. Parents are a crucial node in the complex daily care of medically fragile children.
“If that primary caregiver, him or herself, got sick with COVID … that's going to be a critical gap in the care,” he said. “And that might compromise the health of the child.” The American Association of Pediatrics also supports that argument.
Emotional relief
Brumbaugh said he’d also like to see his patients’ parents vaccinated because he is concerned about families’ mental health.
“Families have had to isolate themselves for going on 13 months now. It's really hard,” he said. “When the state downgrades its social distancing and community transmission rules, these families don't get to enjoy or partake in any of those things because they are really 100% quarantining themselves. We need to give that group some relief.”
Relief, of course, is relative at the Ivan household. Ethan started school in January and last week, Ivan received an email from the school about an exposure in his classroom. After a few days of quarantine, they all tested negative. Then Ivan’s husband got his first vaccine shot. Ivan won’t be eligible, herself, until vaccines open up to the general population. She says getting it won’t change the precautions her family is taking — but it will go a long way toward relieving the emotional burden they’ve all been carrying.
This story is part of KUNC’s Colorado Edition for March 24. You can find the full episode here.
