By COLLEEN LONG and CAROLYN KASTER
WASHINGTON (AP) – Eight-year-old Brooklynn Chile tumbles on the hospital bed while waiting for the nurse at Children’s National Hospital. The white paper under her curls as she switches to look at the medical objects in the room. She has had coronavirus three times and no one can figure out why.
Brooklynn is lucky, so to speak. Each time she has been tested positive, she has not had any obvious symptoms. But her father, Rodney, caught the virus – possibly from her – when she was positive back in September, and he died of it.
Her mother, Danielle, fears a next fight and fears her daughter could become seriously ill even though she has been vaccinated.
“Every time I think: Should I go through this with her too?” she said, sitting on a plastic chair wedged in the corner. “Is that the moment I lose everyone?”
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. In general, the virus does not affect children as severely as adults.
But as with some adults, there are still bizarre outcomes. Some adolescents suffer from unexplained symptoms long after the virus is gone, what is often called long COVID. Others are re-infected. Some appear to be recovering well, only to later be struck by a mysterious condition that causes severe organ inflammation.
And all that can come beyond grieving over loved ones who have been killed by the virus and other interruptions in a normal childhood.
Physicians at Children’s National and several other hospitals receiving funding from the National Institutes of Health are studying the long-term effects of COVID-19 in children.
The ultimate goal is to evaluate the impact on children’s overall health and development, both physically and mentally – and tease out how their immune system, which is still developing, reacts to the virus to find out why some are doing well, and others do not.
Children’s has about 200 children up to the age of 21 enrolled in the study for three years, and it takes 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. Subjects range from having no symptoms at all to needing life support on intensive care. At their first visit, participants receive a full-day test, including an ultrasound of their heart, blood test and lung function test.
Dr. Roberta DeBiasi, who is leading the study, said its main purpose is to define the myriad complications that children can get after COVID-19 and how common these complications are.
Brooklynn is a study subject. The same is true of 3-year-old Alyssa Carpenter, who has had COVID-19 twice and has strange fever that breaks out unexpectedly, and other unusual symptoms. Her feet sometimes turn bright red and sting from pain. Or she will lie down and point her little fingers at her chest and say, “It hurts.”
Her parents, Tara and Tyson Carpenter, have two other daughters, 5-year-old Audrey and 9-year-old Hailey, who are on the autism spectrum. As for many parents, the pandemic has been a nightmare with lack of schooling, unproductive work, restrictions and confusion. But on top of all the anxiety that so many parents feel lies the worry of their little child. They do not 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 figure out answers for our child, and no one could give us any. And it was just really frustrating.”
Alyssa would moan in pain from her red burning feet or whimper quietly. She had a fever but had no other symptoms and was sent home from school for days, ruining Carpenter’s work week. But then in ballet classes, with her pink tights and tutu, she would seem completely normal.
In the last few months, the symptoms have started to subside and this has given the family some relief.
“What do we do about this afterwards?” asks Tara Carpenter. “We do not know. We literally do not know.”
For some families in the study, the child suffering from prolonged COVID is the easiest during hospital visits.
One day recently, another family discovered that it is big sister Charlie who is crying because she does not want the blood drawn, while little sister Lexie, who is used to being pricked by nurses and doctors, jumps on the table. The family dynamics of COVID-19 are harsh: Siblings with the disease may receive more attention, which may create problems for others. Exhausted parents struggle with how to help all their children.
In their processing, the children receive a full medical check-up. They also receive a complete psychological assessment, driven by Dr. Linda Herbert.
Herbert asks the children about fatigue, sleep, pain, anxiety, depression and peer relationships. Do they have memory worries? Do they have difficulty keeping things in mind?
“There’s this constellation of symptoms,” she said. “Some children are incredibly anxious to get COVID back.”
She said that psychological symptoms are among the most common, and it is not only the children with COVID-19, it is also their siblings and parents.
Danielle Chile feels the stress. She is a single mother working full time, mourning the loss of her partner and trying not to seem too depressed towards her daughter. The decision to enroll her daughter Brooklynn in the study was motivated by the fact that she wanted to raise awareness of the need for vaccines, especially in the black community.
“My baby keeps getting it,” she said. “Can’t people around us try to protect her?”
Brooklynn whines when she hears she must have taken blood: “Do you have to?”
“Yes, honey,” said the nurse. “That’s so we can find out all this.”
“If her father was here, he would take her to Dave & Busters after this,” Chiles says before lowering her voice so her daughter can not hear what she wants to say. Her husband, Rodney Chiles, was not vaccinated.
He had concerns, as many do, about the vaccine and was waiting to get it. Shortly after Brooklynn tested positive during the delta variant, he began to feel ill and quickly went downhill. Chile also had pre-existing conditions, which hastened his death. He was 42.
‘And then he called us on a Sunday. He said, ‘They’re intubating me because I can not keep my oxygen up. And I love you and Brooklynn, forgive me, ‘she said. That was the last time he spoke to them before he died.
“I have to tell you what,” says Danielle Chiles. “The only reason I’m still here is because I have a child.”
On school days, Chile 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 resuming work for a nonprofit.
One recent day after school, when Chile had a Zoom meeting at her bedroom office, Brooklynn munched on popcorn and talked about 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 they had to come home and check the size. She giggles as she tells it.
In her room, there is a large picture of her father and her, even though she now usually sleeps in bed with her mother.
“Even though children are not so sick, they lose,” Chiles said. “They lose parents, social lives, all year. Yes, children are resilient, but they can not continue this way. No one is so resilient.”
AP Medical Writer Lauran Neergaard contributed to this report.