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‘It’s Like Something Took My Kids Away’: How Chronic COVID Transformed a Family

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Three-year-old Ashley hates her new heart monitor. She cries when her parents attach it and she cries when they remove it. She is constantly wrestling with the wires and trying to tear off the stickers—the flailing edges revealing traces of the purple bruises beneath. Her mother, Christine, stops her just before she completely rips them off.

“But why do I have to wear it, Mommy?” Ashley asks.

Christine doesn’t know how to tell her toddler that doctors suspect she has heart inflammation in association with her COVID-19 diagnosis from seven months ago. Instead, she wraps the truth in a story fit for a 3-year-old girl, treating it like the pills she cushions in soft foods to make them easier for her daughter to swallow. 

“You know Ashley, this is very special, and barely anybody gets to wear one, but they picked you because your heart is so beautiful that doctors want to take pictures of it so they can see all the love that you have in it and show it to other doctors,” she says. “So when you wear it, I want you to think really hard of all the love in your heart—think of everyone and everything that you love so much.”

Ashley contemplates this for a few seconds.

“Can I think of bunnies and birdies?” she asks. 

“Yes,” Christine says. “Yes, of course, you can.”  

It’s enough to get Ashley to stop fussing with the monitor.

Myocarditis: That’s the diagnosis too complicated to explain to a 3-year-old. Christine is well aware of its meaning, along with the implications, because she has it too. The symptoms of this condition, increasingly being detected in those who previously contracted COVID-19, include inflammation of the inner heart muscle and shortness of breath.

Ever since their family contracted SARS-CoV-2 in March, Christine, 40, and her husband JJ, 40, have carefully crafted a facade of normalcy despite the deteriorating conditions of Christine and her two children, Ashley and Ben, who just turned 6. The three of them are COVID-19 long-haulers who live with a barrage of symptoms that evolve day by day.

On the one hand, the family belongs to a high percentage of people who recover from COVID-19. On the other hand, Ashley has to wear a Holter monitor for months, Ben can’t walk without getting winded, and Christine’s kidneys are in acute failure. They don’t think this is what recovery is supposed to look like. 

According to Christine, only late at night do she and JJ let their guards down. It’s their unspoken ritual: After putting their children to bed, they sit down and don't do much more than stare at the bedroom wall. JJ goes perfectly still while Christine clutches his hand and allows herself to cry. The couple sits like that for an hour or so.

Then they spend the rest of the night making a plan to save their children’s lives.

Effects of COVID-19 on Children

“We never thought this would happen to us,” Christine tells Verywell. “I don't know how we got this sick. I just don't know. I obsess about it and go over and over it. I keep thinking if someone would have come up to me before and said this is horrible and it can happen to your family—yes, your happy, healthy family—I would have changed everything.”

But by the time she knew, it was already too late. Christine and her children came down with bronchitis and pneumonia in early March, right before a shelter-in-place order was issued (they would later all test positive for SARS-CoV-2). At that time, they were told that SARS-CoV-2 hadn't yet spread to their small town in North Carolina and that it would only infiltrate major cities. They were told that even if they did become infected, they would all recovery swiftly, their children virtually unaffected. 

They didn’t know they could get so sick, and they certainly didn’t know they would stay so sick. 

Christine, COVID-19 long-hauler and mom of 2

We never thought this would happen to us. I don't know how we got this sick.

— Christine, COVID-19 long-hauler and mom of 2

Besides her heart condition, Ashley experiences fainting spells that doctors suspect are actually seizures. She has lost bladder control, can’t regulate her body temperature, and gets winded, dizzy, and lethargic from the slightest form of physical activity. Ben suffers from chronic fatigue that sometimes forces him to fall asleep in the middle of his online kindergarten classes. He is plagued by shortness of breath, night sweats, chest pain, and unexplained rashes. All he wants to do is run and play the way he used to, but he can’t find the stamina for it. Christine has to trail after him with a chair so he doesn't fall to the floor. 

“It’s like something took my kids away,” Christine says. “They're just empty. They’re not themselves. They haven’t been themselves in months.” 

While most children may not develop severe COVID-19, studies show that one in three children hospitalized with COVID-19 ends up in the intensive care unit (ICU). The Centers for Disease Control and Prevention (CDC) lists asthma, diabetes, and obesity among the underlying medical conditions that contribute to COVID-19 complications in children. However, Ben and Ashley didn’t exhibit any of the conditions that put children at-risk. There were no precursors to warn the family.

Christine wants every parent to understand that children are not immune—not from COVID-19, and not from its long-term effects. 

“I want to protect another mother from going through the hell that I'm going through right now—maybe we can keep a kid out of the hospital, maybe we can keep a kid off of a breathing treatment, maybe we can make it so that a mom can rock her baby to sleep,” she says. “I don't want to scare people, but I think everyone is entitled to all the information: When COVID comes, it can change your life forever.”

Kelly Fradin, MD, a board-certified pediatrician and author of Parenting in a Pandemic: How to help your family through COVID-19, tells Verywell that common viruses such as influenza, RSV, and metapneumovirus can trigger serious medical problems and complications, including long stays in the ICU, seizures, surgeries, and even death.

“I don't doubt that some children have had horrible complex courses from COVID-19. These patients deserve to have their stories investigated and receive top-notch medical attention,” she says. “However, I would encourage parents to remember that these stories are rare. With more time, we'll have more information on just how often children experience prolonged symptoms.”

Currently, there are no pediatric SARS-CoV-2 vaccine trials. As schools around the U.S. open up, Christine worries that parents may not be prepared for the potential ramifications of COVID-19. A recent study shows that children can store high levels of viral RNA in their throats and noses, and the largest COVID-19 contact tracing study to date elucidates the effects of this: that children are among the biggest spreaders of the virus.  

The COVKIDS Project estimates that 3.4 million children have had coronavirus in the U.S. Of those children, many make a full recovery. But many, like Ashley and Ben, do not. 

Ashley and Ben have been to multiple cardiologists, pulmonologists, and neurologists over the past six months. They are both scheduled to take an array of medical exams, but Christine says so far, exams have only diagnosed and ruled out conditions. They haven't pinpointed a treatment. As is the case with adult long-haulers, there is not yet any understanding of the long-term impact of COVID-19 for children, and there is no clear picture of what the prognosis will look like. Doctors suspect dysautonomia—the dysregulation of the autonomic nervous system—might be the root of many long-haul issues. Ashley is getting tested for it this month.

“The autonomic nervous system is a part of our brains that controls our blood pressure, heart rate, and stress response. Dysautonomia refers to when this malfunctions and a person experiences irregularities in these core processes,” Fradin says. “Some children manifest irregular heart rate or unusually low temperatures. Because dysautonomia is rare in children, families may need to reach out to specialists who have more experience.”

In the absence of clear guidance, Christine has turned to online support groups, which were initially tailored to adults, but now host many parents of child long-haulers. Christine maintains active contact with about 30 other mothers. Some have stories that mirror hers, while others are faring much worse, with children who are now completely bedridden or in wheelchairs. One of her closest friends from these groups is a mother in Belfast, Ireland, with a son who has severe liver damage and can no longer get out of bed. He is 8 years old. 

“At night, mothers from around the world gather facts together and try to save our children,” she says. “Moms are desperate for people to see their kids as people, not a number. We know that people truly want to do the best for their families, but you just never know how COVID will affect you. Maybe you'll be one of the lucky ones and it will be like a flu, but maybe you’ll be like us.”

The Toll of Being Both a Long-Haul Patient and a Parent

Christine’s symptoms are the strongest, though she keeps them the quietest. In February, she was fit and active, with no health conditions that would make her susceptible to severe COVID-19 symptoms.

Over the past few months, she has developed several different conditions: myocarditis, costochondritis (an inflammation of the ribs), lung damage, pulmonary embolisms, brain fog, chronic fatigue, chest pain, nausea, facial swelling, fevers, and difficulty breathing.

This past weekend, she went to urgent care with severe kidney pain and blood in her urine. Physicians there told her she needed to be admitted to the hospital because she might be experiencing kidney failure. When she went home, she packed her bags and told her kids an abridged version of why she needed to go to the hospital. They broke down instantly. They had seen her taken away by an ambulance twice in the past five months.

“But you promised you were getting better," Ben said.

So instead of heading to the hospital, she put an ice pack on her back and sat with her children in bed, "roasting" marshmallows over a YouTube video of a bonfire. Two days later her test results came back: acute kidney failure. 

“As a parent, you don't have the luxury of being too sick to care for your children. You have to just try as hard as you can to tough it out because they can't do it for themselves,” she says. “My husband is constantly insisting I go back to the doctor and focus on myself too, but I always say I will do that after I know my kids are okay. I just have to know my kids are okay, and then I can get treated.”

Christine, COVID-19 long-hauler and mom of 2

As a parent, you don't have the luxury of being too sick to care for your children.

— Christine, COVID-19 long-hauler and mom of 2

Though JJ, an engineer, exhibited brief COVID-19 symptoms earlier on, he recovered. His burden is different: He lives with the fear that at any time, he can lose his entire family.

“Every day, I ask him how he gets through this, and he tells me it's different watching your family deteriorate in front of your eyes and not knowing whether or not you're going to make it through this winter or you're going to end up putting your family in a box,” Christine says. “At night, he will get up to make sure everyone is breathing. He makes it a point to constantly be with me and the kids at all times because he is petrified. He keeps saying he’s so scared he’s going to have to bury our family.” 

Now, the family is desperately trying to seek treatment at Mount Sinai Center for Post-COVID Care in New York City, which is one of the only facilities in the country geared towards treating long-haul patients. If they can’t treat her, Christine says it’s okay. She only wants to give her children a fighting chance. She is horrified of what their future will look like now that the virus has left its mark on their developing bodies.

“I know I might not make it, but my kids have to,” she says. 

Christine and JJ make it a point to reassure their kids that they will all get better and life will return to normal. When the kids have enough energy to play, Christine is there with two chairs waiting to catch them. When they are too sick to exert any physical effort, she creates DIY projects to keep them engaged.

“We had to give them somewhat of an understanding of what's going on, but we always tell them that there’s going to be a cure and doctors are going to save us,” she says. “But the truth is, we don’t know if we are going to get better. Are we going to be long-haulers forever? Are we going to make it? Are we ever going to go back to what we knew, or is this our life now?” 

The kids never complain. They are resilient and brave—something they learned from their mother. They want to return to normalcy, but only when they are better. They are petrified of getting others sick, even though they are no longer contagious. 

Recently, Ben asked Christine if they can throw a big "I love you party" when the pandemic ends and they overcome their illnesses.

“Can everyone that we love come over so we can see them and hug them?" he asked.

Christine struggled to find words. “Yes, as soon as this is over, we are going to have a great big ‘I love you party,’ and everyone's going to come over, and we're going to give everyone a lot of hugs and tell everyone how much we love them,” she said.

Ben’s face broke into one of the biggest smiles since March, Christine says. “And I can see everyone I love? And I won’t get anyone sick? And I can run and be able to breathe after?”

“Yes,” Christine said. And she prays she’s right. 

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