Children’s hospitals grapple with young COVID-19 ‘long haulers’ — still unwell months after illness

A slumber party to celebrate Delaney DePue’s 15th birthday last summer marked a new chapter — one defined by illness and uncertainty.

The teen from Fort Walton Beach, Florida, tested positive for COVID-19 about a week later, said her mother, Sara, leaving her bedridden with flulike symptoms. Her expected recovery, however, never came.

Delaney — who used to train 20 hours a week for competitive dance and had no diagnosed underlying conditions — now struggles to get through two classes in a row, she said. If she overexerts herself, she becomes bedridden with extreme fatigue. And shortness of breath overcomes her in random places like the grocery store.

Doctors ultimately diagnosed Delaney with COPD — a chronic lung inflammation that affects a person’s ability to breathe — said Sara, 47. No one has been able to pinpoint the cause of her daughter’s decline.

“There’s just no research there,” she said. “Kids are not supposed to have this kind of condition.”

While statistics indicate that children have largely been spared from the worst effects of COVID-19, little is known about what causes a small percentage of them to develop serious illness. Doctors are now reporting the emergence of downstream complications that mimic what’s seen in adult “long haulers.”

In response, pediatric hospitals are creating clinics to provide a one-stop shop for care and to catch any anomalies that could otherwise go unnoticed. However, the treatment offered by these centers could come at a steep price tag to patients, health finance experts warned, especially given that so much about the condition is unknown.

Nonetheless, the increasing number of patients like Delaney is leading to a more structured follow-up plan for kids recovering from COVID-19, said Dr. Uzma Hasan, division chief of pediatric infectious diseases at St. Barnabas Medical Center in New Jersey.

“The cost of missing these children means a horrible event,” she said. Unanswered questions More than 3 million children and young adults had tested positive for COVID-19 in the United States as of Feb. 18, the American Academy of Pediatrics and the Children’s Hospital Association report. Most of these kids experience mild, if any, symptoms.

Over the course of the pandemic, though, it has become apparent that some children develop serious and potentially longterm problems.

The most well-known of these complications is called “multisystem inflammatory syndrome in children,” or MIS-C. Symptoms — which include high fever, a skin rash and stomach pain — can appear up to a month after getting COVID-19. Around 2,000 cases have been identified in the United States. Black and Hispanic children make up a disproportionate share: 69%.

But clinicians also said they’re increasingly hearing of children seeking help for different complications, such as fatigue, shortness of breath and loss of smell, that don’t go away.

At Norton Children’s Hospital in Louisville, Kentucky, clinicians set up a clinic in October after receiving calls from area pediatricians who had patients with long-haul symptoms.

No one knows how often children develop these symptoms, how many already have the illness or even what to name it, said Dr. Kris Bryant, president of the Pediatric Infectious Diseases Society, who works at the hospital.

The children see an infectious diseases doctor who then refers them or orders tests as necessary.

So far, the clinic has seen about 25 patients with a wide range of symptoms, said Dr. Daniel Blatt, a pediatric infectious diseases specialist involved with the clinic. Because COVID-19 mimics symptoms associated with a variety of other illnesses, he said, part of his job is to rule out any other possible causes.

“Because the virus is so new,” Blatt said, “there’s a presumption that everything is COVID.”

Similarly, an ad hoc clinic for other young patients has been set up within the cardiology department at the Children’s Hospital & Medical Center in Omaha, Nebraska. Patients are screened to assess the heart’s structure and how it functions. She said they’ve been seeing six to eight patients per week.

“The question I can never answer for the parents,” said Dr. Jean Ballweg, a pediatric cardiologist at the hospital who also works at the clinic, “is why one child and not another?”

So far, Ballweg said, she’s seen no published literature on the heart health of children who develop these symptoms after recovering from COVID-19. By standardizing how doctors in the clinic collect data and treat patients, Ballweg said, she hopes the information will provide some clues as to how the virus affects a child’s heart. “Hopefully, we can look at the collective experience and recognize patterns and provide better care.”