Yale New Haven and Saint Barnabas Doctors Explain “Long COVID”

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Concerns about the new Delta variant and its rapid spread have sparked new discussions over mask requirements and vaccine mandates, particularly in Connecticut’s schools. But medical professionals are also weighing a relatively new concern — physical and psychological symptoms that may affect an undetermined number of patients, including a small number of children, for months after an initial infection. 

In early June, Yale New Haven Children’s Hospital launched a post-COVID comprehensive care program for children who may be experiencing long-term effects from COVID. Dr. Carlos Oliveira, a pediatric infectious diseases physician-scientist who chairs the multidisciplinary pediatric COVID-19 and MIS-C treatment team, said that the hospital developed the clinic to bring different medical specialists together in one place.

According to Oliveira, long-term effects of COVID in youth tend to manifest in two ways. The first, which is more prevalent in younger children, are lingering physical effects from a disorder called MIS-C, or multisystem inflammatory syndrome in children. 

MIS-C is a disorder in which a child or young adult who has tested positive for or been exposed to COVID experiences fever, inflammation and damage to multiple organs, including the kidneys, heart or lungs. According to CDC data, a total of 4,404 individuals under the age of 21 have been diagnosed with the syndrome since July 30, including 63 children in Connecticut. 

Oliveira said the clinic has been monitoring children who were hospitalized in their clinic with severe cases of COVID. He said that between five and 10 percent of children who were hospitalized with COVID will have symptoms that persist after their hospitalization. 

This is a minority of those who are infected with COVID — since March, that includes about 3.68 million children across the country who have been diagnosed with COVID, and about 47,000 hospitalized children who have tested positive for COVID, according to data from the CDC. 

Oliveira said Yale’s clinic has seen about 30 children and young adults who are experiencing symptoms of “long COVID”, and that an additional 60 children or so have come in with MIS-C.

According to Oliveira, the majority of children they see in program have experienced serious cases of either COVID or MIS-C, but he said that he has also seen children with long-term symptoms after only mild cases of the disease. 

“We have seen anywhere from the range of children who have had fatigue, difficulty sleeping, shortness of breath, that have lingered for months to years,” he said. “And then we have had children who have just damage to a particular organ that require long-term follow-up,” 

In adolescents, long-term COVID effects are similar to what adults have reported. Dr. Uzma Hasan, Division Chief of Pediatric Infectious Diseases at Saint Barnabas Medical Center in Livingston, New Jersey, said that the adolescents she has seen have complained of a wide range of symptoms: prolonged fatigue, persistent loss of taste and smell, episodes of dizziness, low blood pressure and “brain fog.” 

“These were kids who were the high functioning, type-A, hyper-achievers who used to be straight A students in school who are struggling with, you know, basic math,” said Hasan, who coordinates a pediatric post-COVID care program at the center. 

Hasan said the dizziness and blood pressure tended to have a larger effect on athletes, kids who were used to powering through multiple games and now struggled to get through one. She also said that she’d seen anxiety and depression in children with no previous issues of mental health.

Although fatigue and anxiety can come from a variety of  sources, including the recent stress created by the pandemic, Hasan, Oliveira and other doctors who study long COVID say that there is reason to believe that the symptoms they are seeing in patients are correlated directly with having had the virus. Hasan said that the clinic screens patients who come in with anxiety and depression to evaluate how much is related to COVID versus other life factors. She said it can be difficult to convince people to take these symptoms seriously. 

“Our biggest struggle is that many, many folks are dismissive about these symptoms, which results in a frustrated child and an even more frustrated parent,” said Hasan. “They’re getting told that, ‘Oh, your child has nothing. They’re going to get over it once they get back to school.’ And that is not truly the case.” 

A different sort of illness? 

Oliveira said that the majority of adolescents he saw who were experiencing fatigue or other long-term COVID symptoms had other conditions prior to contracting COVID, such as diabetes, obesity or seizure disorders. Hasan, however, said that most of the adolescents she saw were “completely healthy” before they contracted COVID. 

In contrast, both Oliveira and Hasan said the children who came down with MIS-C were often healthy before catching the virus, and their initial response to the virus was fairly mild. 

“Their hospitalization for MIS-C is oftentimes a surprise to many of the parents because they didn’t know [the children] had COVID in the past, even though they have antibodies against the virus,” said Oliveira. 

COVID is not the only virus that can cause long-term effects in children. Other viruses such as Epstein-Barr, mononucleosis and Lyme disease can cause long-term symptoms like fatigue. Hasan compared the symptoms to chronic fatigue syndrome or fibromyalgia. 

Akiko Iwasaki, a professor of Immunobiology and Molecular, Cellular and Developmental Biology and Epidemiology at Yale who studies long-COVID in adults, said that almost any infectious disease can have these symptoms. 

Oliveira and Iwasaki said they were seeing more people with long-term reactions to COVID than to other infectious diseases, which they attribute to how widespread the virus is and the fact that medical professionals are on the lookout for these responses. 

“It could just be that we’re looking for post-COVID symptoms, and so we’re finding them. We may not be looking as aggressively for some of these other ones,” said Oliviera. 

However, Hasan said she also thought COVID included some unique factors.

“I feel like this illness is different … I feel like we see more organ system involvement with this,” said Hasan. “I feel like there is a need for a multidisciplinary approach.” 

Long-term effects on the body

Hasan said that their clinic provides athletes with physical therapy and conditioning, and that they provide rehabilitation services for children exhibiting neurological symptoms. Oliveira said the doctors at the Yale clinic create a recovery plan that is tailored to the child’s needs. If a child is having fatigue, for example, the doctors will slowly increase the child’s daily activities through rehab and put them on an exercise regimen. He said that anxiety and depression can also crop up from the stress of having to deal with the long-term symptoms, and that those need to be addressed as well. 

According to Hasan, the majority of these symptoms last about three months, although about 10 to 15 percent of her patients have symptoms that last four months or longer. Oliveira said most of his adolescent patients recovered within the first six months, although a handful continued to have symptoms after a year. 

Oliveira also said that some of the children who had MIS-C have damage to their kidneys, heart, or lungs. He said that laboratory tests have found elevated troponin levels — proteins that indicate cardiac damage. The virus can damage the arteries or make it difficult for the heart to pump at full strength, or the scar tissue can limit heart function. It can also cause swelling of the coronary arteries. For these children, it’s not as clear how long the damage will last.  

“Some of the damage to the heart may actually become significant, as they grow, and the heart actually enlarges,” said Oliveira. 

Oliveira said that they also may not be capturing all of the symptoms that children are experiencing. With younger children, he said, it can be challenging to figure out how this damage is impacting them on a day-to-day basis, since they often can’t articulate what they are feeling.  

“The more subtle subjective symptoms are far more challenging to ascertain in the younger children, which may be why we’re not picking up on a lot of these manifestations in the younger cohorts,” said Oliveira.

He said the doctors tended to rely on parents to tell them about things they are noticing in their child — for example, if a child is sleeping more than usual during the day. 

Oliveira said it is also important to take into account the effects that the pandemic has on children in general. Having a parent hospitalized with the virus can create stress on a child and have financial implications for a family.  

“I’ve had plenty of families where both parents were hospitalized and very sick in the ICU. The kid might have been mildly ill, but they were alone. They didn’t have anybody to take care of them. And so that will have long-term effects on the life of that child psychologically, irrespective of what the virus did to their body,” he said. 

Kids tend to be far more resilient

Doctors are still missing a significant amount of critical information about long COVID — including just how many people exhibit long-term symptoms, why only certain people experience long COVID, and what is actually causing the extended malaise. 

Iwasaki said there are several theories in play about what is causing long-COVID symptoms in general. She said it’s possible that the virus may hide out in pockets of tissue and cause chronic inflammation. Or, she said, these individuals’ immune systems may be attacking their own bodies, causing them to get sick. 

Oliveira said it’s too early to know why there is such a wide variation of responses to the virus. 

“We haven’t found any particular medical condition or genomic, genetic sort of association with the [MIS-C] disease. We just know that it is something to do with the immune system response to the virus that is triggering this out of control inflammation,” he said. 

Hasan did say that the majority of the children who came into the center with MIS-C were Black and Hispanic children. CDC data shows that Black and Hispanic children constitute 63 percent of the children who were diagnosed with MIS-C nationwide. 

Hasan also estimated that 70 to 80 percent of the children, from all ethnicities, admitted to the hospital, were from families who were not vaccinated. She said that adults getting vaccinated would protect children who were not yet eligible for the vaccine. 

“We have to do everything to protect these kids, starting by vaccinating the adults around them,” she said. 

Oliveira said that while they still aren’t sure how successful they will be overall in treating these symptoms, he has seen plenty of success stories. 

“Kids tend to be far more resilient. There’s no question about that,” he said. “I have seen many, many children who go from sick to recovered and have gone and no longer follow up with us.”

Editor’s note: this story has been updated for clarity

Emilia Otte

Emilia Otte covers health and education for the Connecticut Examiner. In 2022 Otte was awarded "Rookie of the Year," by the New England Newspaper & Press Association.