Life in the pandemic has been a whirlwind of change for most families.
They hunker down at home with the kids 24/7, doing everything in their power to protect everyone from a contagious virus.
“Welcome to our world,” say Amanda and Mike Elenbaas.
The Hudsonville, Michigan, family has essentially lived in lockdown for 3½ years, since their daughter, Jada, was born without an immune system.
And they have good news for families struggling with the transition:
You can survive this.
You can even thrive as a family.
In caring for their girl “in a bubble,” they have learned tips they freely share to help others today.
‘How did you do this?’
Born with a rare condition called complete DiGeorge syndrome, Jada lacked a thymus, the gland that develops an infant’s immune system. She came into the world without the ability to fight off infections.
She spent much of her first year at Spectrum Health Helen DeVos Children’s Hospital battling a virus that, in most people, would only cause mild cold symptoms.
At 7 months old, Jada received a thymus transplant in hopes it would help her immune system develop.
Thus began a long wait for Jada’s T-cells to form. It took 18 months before the first ones appeared.
The couple became vigilant about creating a safe place at home, where Jada and her brother, Odyn, 5, would be free from infections.
“I think they have managed it as well as anybody possibly could,” said Nicholas Hartog, MD, a pediatric immunologist with Helen DeVos Children’s Hospital. “The fact that Jada is here with us today speaks to how well they have managed keeping her in isolation for 3½ years.”
Odyn, who was 1½ when his sister was born, didn’t remember a time when they could go out to family gatherings or stores.
At bedtime, he prayed for T-cells for Jada. He put T-cells on his Christmas list.
In January—nearly three years after the transplant—her parents learned Jada’s T-cell count had risen high enough to take her off the medications she had been receiving to prevent infections.
“She’s doing fantastic,” Dr. Hartog said. “From an immune perspective, her T-cells have recovered and they are working.”
He gave Amanda and Mike the green light to take Jada out in public and to invite others into their home.
For their first family outing, they went to Cabela’s outdoor outfitters store. Jada stared in fascination at the flurry of lights, the fish tank, and colorful equipment.
The COVID-19 pandemic has put a stop to Jada’s outings. Once again, the Elenbaas family sits tight at home, following Michigan’s “stay home, stay safe” policy. The only big change is that Mike now works at home, instead of going into the office.
The couple put to use all the tricks they learned in the past 3½ years to keep their family safe from infection.
“Jada hasn’t had a virus in three years,” Amanda said. “So, it does work.”
As the rest of the state adjusts to life in isolation, friends are turning to Mike and Amanda as the experts.
“The biggest thing I hear is how eye-opening it is,” Mike said. “People are reaching out and asking, ‘How did you do this?’”
Keeping germs at bay
“Hand-washing is huge,” Amanda said.
Really. It’s hard to overemphasize the importance of washing hands—and not touching your face, the couple said.
They have groceries delivered to their home, either by a delivery service or a family member.
And they go through a lot of disposable gloves.
They put on a pair when picking up a prescription at the drive-through pharmacy.
“We wear gloves when we touch the pen and box and everything,” Amanda said.
They wear gloves when they open the mail. And they put on gloves to pump gas and run their credit card through the pump.
“We’ve been wearing gloves for three years,” Mike said. “Now, we don’t look weird when we are doing this.”
Whenever they bring any item into their home, they wipe it down with disinfecting wipes. When Mike worked in an office, he used to wipe down his glasses, phone and laptop every day when he came home.
When you have a child with a suppressed immune system, “you see the world through a different view,” Mike said. “You picture the world as being the dirtiest place in the world.
“You live your life differently, and you can get through it.”
Think of others
Mike and Amanda stressed the importance of avoiding gatherings, practicing social distancing and following the lockdown—not just for yourself, but for Jada and others who have suppressed immune systems.
“I don’t think (the novel coronavirus) is scaring people enough here yet,” Mike said.
He sees too many people “living their lives and not realizing the implications of what they are doing.”
“I think people just need to realize that the isolation is going to be temporary,” Amanda said. “If everyone does their part and stays home, this will go by faster, hopefully.
“You’ve only been doing it two weeks. Your life is going to go back to normal.”
Make the most of time together
The couple offered strategies to cope with the emotional and social effects of isolation.
“It was very hard the first two years,” Amanda acknowledged. “But now it’s just our norm. We find ways to do fun things.”
She has a routine with the kids, moving from room to room as they do homeschool projects, bake cookies and play games.
Jada has become much more mobile since the early days, when she was on a ventilator, feeding tube and a central line. Now, she only needs supplemental oxygen at night, and she can walk and climb throughout the house.
In warm weather, the kids play in the yard. They hold outdoor movie nights with grandparents. And they enjoy backyard fires.
They stay connected with friends and relatives through online services like FaceTime.
For indoor fun, they play board games and read books.
Ironically, the pandemic has meant more options for entertainment and learning for kids—including virtual tours offered by zoos and museums.
“It seems there is so much more available now,” Amanda said. “It’s been kind of nice for us.”
Although they wouldn’t choose life in isolation—for themselves or others—Mike and Amanda said it has its perks. Without a lot of outside commitments like school and activities, life can move at a more relaxed pace.
They see more families taking walks together. They hear about more family game nights.
Their advice to parents: “We would say enjoy this time with your kids or family at home,” Amanda said. “Life can be hectic, and this gives a lot of families the time to slow down and be together.”