The COVID-19 pandemic strained health care systems around the world — and it also challenged medical organizations that support children with serious medical conditions and their families.
Many of these national and international groups pride themselves on providing support services and memorable experiences for children who face serious and/or life-threatening illnesses — which often include in-person assistance and events that had to be curtailed, limited, or adapted during the past 2 years for safety reasons.
These organizations had to pivot by finding creative ways to help families, canceling some services and programs that could put people at risk, and adapting protocols as information about COVID-19 and risk levels continues to shift.
Here’s how three organizations — Ronald McDonald House Charities, Make-A-Wish Foundation, and St. Jude Children’s Research Hospital — navigated the pandemic to continue to meet their mission.
Ronald McDonald House
Ronald McDonald House Charities (RMHC) is best known for its 350+ houses around the world that provide a home away from home for families that must travel to get medical care for their child. The houses are run by local chapters.
In addition to offering families a place to stay, they provide education programs, recreation, group meals, and common areas for kids to play and families to connect — all of which became problems during the pandemic.
In March 2020, due to the pandemic, the organization stopped admitting new families to all houses around the world.
“It was a brutal decision,” said Kelly Dolan, president and CEO of RMHC. “But especially with our patient population being the most vulnerable among us — being sick and injured children, many of whom are immunocompromised — our number one goal was to keep children safe and keep their families secure.”
While their doors were closed, RMHC chapters reached out to hotels to find alternative housing for families, when possible. RMHC also had to figure out a way to manage safety rules and protocols for houses in different areas around the country and world, which all had varying degrees of outbreak and different laws and mandates. They created a detailed set of ways to determine when it was safe for each house to reopen.
Some houses in the U.S. began welcoming families again in May 2020. But even when their doors opened, many of the services had to be canceled or changed.
“We have story time, we have movie night, we have community gardens. We have a tremendous amount of programming that we do that brings families together. And of course, all that had to cease,” Dolan says.
In addition to shuttering programs and services, which included its in-hospital family rooms, the organization lost another vital component: its volunteers.
“In any given year, we have over half a million volunteers. I think the year prior to the pandemic, we were at 536,000 volunteers that we accessed to provide all of that programming — to greet people and to cook the meals. Everything from Girl Scout troops in the United States coming in to bake cookies to a retiree in Jordan who did lunch every day,” Dolan says.
RMHC’s 5,000 paid staff had to pick up the slack.
“I’m just so proud of our staff and our teams and how they stepped up and for what they did — just delivering on our mission in ways that were truly nothing short of extraordinary,” Dolan says.
The charity also had to find new ways of fundraising, since in-person events were canceled. The entire organization shifted its efforts online. It was a large undertaking, but in the end, it helped the organization find new ways of reaching people to support their work, Dolan says.
Make-A-Wish Foundation
Make-A-Wish Foundation grants wishes for children who are critically ill or have terminal health conditions. It had to “reimagine” ways to make wishes come true, says Frances Hall, vice president of mission advancement.
Many wishes include vacations and cruises for families to places around the world, large parties and events, or in-person meetings with celebrities or famous athletes — none of which were possible during the pandemic.
While Make-A-Wish never stopped granting wishes, it did postpone wishes that involved airline travel and large events. And it brainstormed other ideas that were safe and doable.
Wishes during this time included online shopping sprees, room makeovers, gifts of backyard playsets, gaming systems and computers, virtual celebrity meetings, staycations, pets — the charity granted a lot of wishes for puppies — and camping trips, where families traveled in camper vans to visit national parks.
“It is humbling to see the creativity that has come from our wish grantors during this period of time,” Hall says. “It really brought out the best in everyone.”
In about a year and a half from the start of the pandemic, Make-A-Wish granted about 12,500 wishes. It usually averages about 16,000 wishes a year.
One challenge was making sure that each reimagined wish was of the same high-caliber experience that the organization has become known for, Hall says. Local chapters and volunteers used drive-by parades, personal notes, lawn signs, and more to also buoy the spirits of those who were waiting for their wish.
Another Take on a Teen’s Wish
Logan Worrell, a 17-year-old from Sanford, FL, was one of the teens to receive a reimagined wish.
Worrell originally wanted to visit a Marvel movie set, which Make-A-Wish was able to arrange. But Worrell, who was diagnosed before birth with polycystic kidney disease, was sick and hospitalized when his wish was set to be granted. His medical team didn’t think it was safe for him to go, especially with the added risks at the start of the pandemic.
So he opted for another wish: a room makeover, since his family had just moved to a new home.
“My favorite part of the experience was telling Make-A-Wish what I wanted in my space and being surprised to see everything for the first time once it was assembled,” Worrell says. “It lifted my spirits and showed me that Make-A-Wish did not forget about me. It also took the pressure off my mother to replace furniture for me, which can be expensive.”
As the pandemic — and mandates and recommendations from health officials — evolve, Make-A-Wish continues to adjust wish possibilities.
International travel and cruises are still on hold, and medical teams are always consulted to ensure a wish experience is safe for the child, Hall says. When families do travel, wish grantors research hotels, Airbnbs, and other locations to ensure they follow health and safety protocols. Families also receive care packages with wipes, masks, and sanitizer.
“That’s really our goal right now, is to make sure that kids’ wishes don’t go on hold,” Hall says.
Make-A-Wish also had to move its fundraising efforts online. Fundraising walks (called Walks For Wishes) were done by people in their own neighborhoods, instead of together as a community, after pledges were made online.
Many local chapters also held their annual galas virtually, with organizers going into a studio to pre-record stories and speeches. One chapter had a company deliver more than 200 dinners to people who purchased gala tickets to enjoy while watching the event.
St. Jude Children’s Research Hospital
When the world shut down during the pandemic, doctors, immunologists, and researchers at St. Jude Children’s Research Hospital knew they had to tackle the COVID-19 virus head-on. They needed to understand how the virus could impact children with cancer, children who are immunosuppressed or have blood disorders like sickle cell disease, and how to continue their lifesaving care.
“Early on, we saw this could be serious and we got prepared,” says Liza-Marie Johnson, MD, hospitalist program director at St. Jude Children’s Research Hospital.
Hospitalists — doctors who treat children in the hospital — stepped forward to be the COVID-19 inpatient service ready to care for children with COVID. They worked closely with the hospital’s infectious disease doctors and created rules such as having one doctor at a time be the point of contact for patients with COVID to lessen exposure.
The hospital also set up a screening policy for staff to ensure that people who didn’t have symptoms or had a higher chance of exposure didn’t pass on the virus to their medically fragile patients, Johnson says.
Thankfully, the hospital never saw an influx of patients sick with the virus.
“I don’t think we ever had more than four COVID-positive patients in the hospital at one time,” Johnson recalls.
St. Jude’s COVID-19 service team also made it a mission to stay on top of the ever-changing research and information that were coming out about the virus, look at how they could impact children with complex medical conditions like cancer, and share those insights with the rest of St. Jude.
Some of the policies that were new to many during the pandemic, like wearing masks, weren’t new at St. Jude. Many patients and providers already wore masks to protect patients who are at a higher risk of getting sick, especially during treatment.
While St. Jude also had to temporarily close its doors to visitors and families, it used iPads so kids could connect with other family and friends. The hospital didn’t have a robust telehealth program before the pandemic, Johnson says, but worked on building out the service to limit travel for children and families whenever possible. St. Jude also spaced out appointments when safe to do so, or scheduled visits at affiliate clinics closer to children’s homes.
Seeing patients virtually also created new challenges. St. Jude providers, who usually treat people from around the country in Memphis, had to organize some patient care based on which providers had medical licenses in different states, since each state has different licensing requirements. (Some states temporarily waived traditional requirements to let people virtually receive care from providers in other states, Johnson says.)
Since only one parent could be at the bedside, staff jumped in to provide extra support.
“Everyone tried extra hard to help out, to make sure the kids were entertained, and [so] the parents could get a break,” Johnson says.
Since group activities in the hospital were canceled, child life specialists tried to replace the normal activities and entertainment by finding out what each child was interested in to provide them with activities to do in their rooms.
Now, thanks to COVID vaccines, some popular hospital events — such as visits from celebrities — are returning, but with extra precautions.
One of the biggest frustrations now is not knowing when things will fully go back to normal.
“I think what’s been hard for everyone is kind of that it’s been enduring. We all want to know: When will things be totally normal?” Johnson says. “If a family were to ask me, ‘The next time I come back to St. Jude, are we still going to have to wear masks?’ You know, I can’t answer that question.”