WASHINGTON — Eight-year-old Brooklynn Chiles fidgets in the hospital bed while waiting for the nurse at Children’s National Hospital. The white paper beneath her crumples as she moves to look at the medical items in the room. She’s had the coronavirus three times, and no one can figure out why.
Brooklynn is lucky, in a way. Each time she tested positive, she suffered no obvious symptoms. But her father, Rodney, caught the virus – possibly from her – when she tested positive in September, and he died.
Her mother, Danielle, fears an upcoming fight, fearing that her daughter will fall seriously ill even though she has been vaccinated.
“Each time, I say to myself: am I going to experience this with her too? she said, sitting on a plastic chair wedged in the corner. “Is this the moment when I lose everyone?
Among the puzzling findings of the coronavirus, which has killed more than 6 million people worldwide since it emerged in 2019, are the symptoms children are suffering from.
More than 12.7 million children in the United States alone have tested positive for COVID-19 since the pandemic began, according to the American Academy of Pediatrics. Generally, the virus does not strike children as severely as adults.
But, as with some adults, there are always bizarre results. Some young people suffer from unexplained symptoms long after the virus is gone, often referred to as the long COVID. Others are reinfected. Some seem to be recovering well, only to be stricken later by a mysterious illness that causes severe organ inflammation.
And all of this can be on top of grieving for loved ones killed by the virus and other interruptions to a normal childhood.
Doctors at Children’s National and several other hospitals receiving money from the National Institutes of Health are studying the long-term effects of COVID-19 on children.
The ultimate aim is to assess the impact on children’s overall health and development, both physically and mentally – and find out how their still-developing immune systems are responding to the virus to find out why some are doing well. and others not.
Children’s has about 200 children up to age 21 enrolled in the study for three years and it takes on about two new patients each week. The study involves children who have tested positive and those who have not, such as siblings of sick children. Topics range from no symptoms to the need for life support in intensive care. On their first visit, participants receive a full day of testing, including a heart ultrasound, blood work, and lung function tests.
Dr. Roberta DeBiasi, who is leading the study, said its main goal was to define the myriad of complications children might have after COVID-19 and the frequency of those complications.
Brooklynn is a subject of study. The same goes for 3-year-old Alyssa Carpenter, who has had COVID-19 twice and has strange fevers that flare up unexpectedly, and other unusual symptoms. His feet sometimes turn bright red and sting with pain. Or she’ll lay down and point her little fingers at her chest and say, “That hurts.”
Her parents, Tara and Tyson Carpenter, have two other daughters, Audrey, 5, and Hailey, 9, who is on the autism spectrum. Like for many parents, the pandemic has been a nightmare of missed school, unproductive work, restrictions and confusion. But on top of all the anxiety so many parents feel is worry for their little one. They don’t know how to help her.
“It was just super frustrating,” says Tara Carpenter, who is quick to add that no one is to blame. “We’re trying to find answers for our child and no one could give us any. And that was really frustrating.
Alyssa was moaning in pain from her burning red feet or moaning softly. She had a fever, but suffered no other symptoms and was kicked out of school for days, ruining Carpenter’s work week. But then in ballet class, with her pink tights and tutu, she looked completely normal.
Over the past few months, the symptoms have started to subside and this brings some relief to the family.
“After the fact, what do we do about it? asks Tara Carpenter. ” We do not know. We literally don’t know.
For some families in the study, the child with long COVID is the easiest during hospital visits.
On a recent day, another family discovers that it is older sister Charlie who breaks down in tears because she does not want blood drawn while younger sister Lexie, used to being pushed by nurses and doctors, jump on the table. The family dynamics of COVID-19 are difficult: the sibling with the disease may receive more attention, which can create problems for others. Exhausted parents struggle to help all of their children.
During their check-ups, the children benefit from a complete medical check-up. They also receive a full psychological evaluation, led by Dr. Linda Herbert.
Herbert asks children about fatigue, sleep, pain, anxiety, depression and relationships with peers. Do they have memory problems? Do they have trouble keeping things in their head?
“There’s this constellation of symptoms,” she said. “Some children are incredibly anxious about getting COVID again.”
She said psychological symptoms are among the most common, and it’s not just children with COVID-19, it’s also their siblings and parents.
Danielle Chiles feels the stress. She’s a single mom working full time, mourning the loss of her partner and trying not to look too depressed in front of her daughter. The decision to enroll her daughter Brooklynn in the study was prompted by a desire to bring attention to the need for vaccines, particularly in the black community.
“My baby keeps having it,” she said. “Can’t the people around us try to protect her?”
Brooklynn moans when she hears she has to do a blood test: “Do you have to?”
“Yes, baby,” the nurse said. “It’s so we can figure it all out.”
“If her dad was here, he’d take her to Dave & Busters after this,” Chiles says, before lowering her voice so her daughter can’t hear what she’s about to say. Her husband, Rodney Chiles, was not vaccinated.
He had scruples, like many, about the vaccine and was waiting to receive it. Shortly after Brooklynn tested positive while running the delta variation, he began to feel sick and quickly plummeted. Chiles also had pre-existing conditions, which hastened his death. He was 42 years old.
“And then he called us on a Sunday. He said, ‘They’re about to intubate me because I can’t keep my oxygen. And I love you all and Brooklynn, forgive me,” she said. It was the last time he spoke to them before he died.
“I’ll tell you what,” says Danielle Chiles. “The only reason I’m still here is because I have a child.”
On school days, Chiles picks up Brooklynn from Rocketship Rise Academy Public Charter School in Southeast Washington. They walk hand in hand to the car for a short ride before she returns to work for a non-profit organization.
On a recent day after school, when Chiles had a Zoom meeting in her bedroom office, Brooklynn munched on popcorn and shared how she and her dad bought a pair of tennis shoes and balloons for her. mother last year on mother’s day. They forgot her mother’s shoe size and had to go home and check the shoe size. She laughs as she tells it.
In her bedroom there is a large picture of her and her father, although she usually sleeps in bed with her mother now.
“Even if the kids aren’t as sick, they lose,” Chiles said. “They lose parents, social lives, whole years. Yes, children are resilient, but they can’t go on like this. Nobody is that resilient.
AP Medical Writer Lauran Neergaard contributed to this report.