Joseph GoldsteinJesse McKinley

Blood will be collected from dozens of children in New York to determine whether they share any genetic variations that might make them susceptible to a mysterious syndrome linked to the coronavirus.

Tissue samples from at least one of the three patients to have died from it — ages 5, 7 and 18 — have been sent to a public health laboratory for intensive testing.

A team of more than 30 disease detectives — epidemiologists, clinicians and statisticians — is poring over thousands of pages of medical records.

Even as doctors and scientists around the world race to develop treatments and vaccines for Covid-19, New York State has become the center of a parallel effort to investigate an unnerving aspect of the outbreak: an illness that is sickening a small but growing number of children.

The ailment has now been reported in at least 161 children in New York, making the state’s caseload one of the largest publicly reported anywhere. Hundreds of other children across the United States and in Europe have also been sickened with the illness, now called multisystem inflammatory syndrome.

The syndrome can be characterized by severe inflammation of the heart, blood vessels, the gastrointestinal tract or other organs, believed to be caused by a reaction to the coronavirus. The inquiries into why it is occurring, and whether a treatment can be found, could have an impact on how the authorities handle the reopening of schools and other activities for children.

Doctors in New York involved in the effort say that not since health officials began investigating the connection between Zika in pregnant women and microcephaly in 2015 and 2016 has there been such an urgent search to understand a mysterious threat to children.

“We’re looking at everything possible — therapies, diagnostics, clinical picture — and we’re trying to pull this all together,” said Dr. Howard A. Zucker, the state health commissioner.

He added: “It does keep you up at night. It’s the worry that is there something we’re going to figure out, in six months from now, and we’re going to say, ‘How did we not think about that possible therapy? How did we not figure out that this would have helped?’”

The rush to understand the syndrome has seemed to strike a chord with Dr. Zucker, who is trained in pediatric cardiology and has reviewed charts of patients with the illness.

He described in an interview the frustrations of doctors trying to treat one of the victims, who at the time was battling against a syndrome that did not have a name. The child was in shock; cardiac function had deteriorated, and with it, breathing.

Tubes were fed down the patient’s throat, and aggressive, life-sustaining measures — mechanical and pharmacological — were deployed, even as a battery of tests were run to try to determine the cause of the illness.

The young patient did not survive.

“Everything was done for that child,” Dr. Zucker said. “Everything.”

Another doctor spoke of troubling heart ailments in children afflicted with the illness. A third talked about treating a 14-year-old in the Bronx, who was admitted in good condition but then rapidly deteriorated.

“Twenty-four hours later, he was aggressively delirious and had to be restrained and sedated,” that doctor, H. Michael Ushay, recalled.

The illness was so baffling that Dr. Ushay, the medical director of the pediatric critical care division at Children’s Hospital at Montefiore, said he was not sure whether the child’s downturn was caused by the disease or a reaction to the medicine the boy was given at the hospital, which included steroids and ketamine.

Almost immediately, doctors noticed that in some patients the symptoms bore a striking overlap to a rare childhood illness called Kawasaki disease, which involves inflammation of the blood vessels and whose symptoms can range from redness of the eyes to damaged coronary arteries that can lead to heart attacks and aneurysms.

But with Kawasaki disease, a fraction of children end up in an intensive care unit or requiring life support. Yet a significant number of the patients with the new syndrome do.


Credit…Benjamin Norman for The New York Times

Dr. Ellen Lee, an epidemiologist at New York City’s Department of Health, was reading through her medical discussion groups in late April, when she came across reports of a mysterious illness affecting children in England that seemed to be linked to the coronavirus. The symptoms included abdominal pain and an inflamed, weakened heart.

She asked her team to call hospitals to inquire if they were seeing anything similar. Some had not. Others had treated children with matching symptoms, but had not understood they were seeing something new. Within a day or two, Dr. Lee’s team had learned of nine cases.

“Those early days, it was just trying to get as much information from the providers, to understand what they were seeing, what was unusual,” Dr. Lee said.

Members of her team contacted the Centers for Disease Control and Prevention. They asked the New York City medical examiner’s office to see if any children had recently died who showed any of the symptoms. They checked with health departments in other major cities. Nobody seemed to know much.

But it would soon become very clear to Dr. Lee, the Health Department and city officials that this new syndrome was rapidly becoming a threat to children in New York.

Across the state, about 70 percent of patients with the syndrome have been cared for in intensive care units, according to Dr. Marcus Friedrich, a senior official at the state’s Department of Health. Some required medicine to raise their blood pressure, Dr. Friedrich said, and 19 percent were put on mechanical ventilators.

A few have required even more drastic intervention, including extracorporeal membrane oxygenation, in which blood is removed from the body and oxygenated by means of a membrane before being pumped back into the patient, doctors said.

Most patients with the new syndrome were previously healthy, without any underlying health problems, doctors said in interviews. And the surge and timing of the cases have led many doctors to conclude the illness is linked to the coronavirus.

Many, though not all, of the children ill with the syndrome tested positive for the coronavirus or for antibodies to it, which indicate a prior exposure. But often, based on interviews with the parents, doctors have concluded that the children had been exposed to the virus several weeks earlier.

“Is it the virus causing this, or the body’s response to the virus after a few weeks?” asked Dr. Edward Conway Jr., the chief of pediatric critical care at Jacobi Medical Center in the Bronx, saying that he suspected the latter.

  • Updated May 20, 2020

    • What are the symptoms of coronavirus?

      Common symptoms include fever, a dry cough, fatigue and difficulty breathing or shortness of breath. Some of these symptoms overlap with those of the flu, making detection difficult, but runny noses and stuffy sinuses are less common. The C.D.C. has also added chills, muscle pain, sore throat, headache and a new loss of the sense of taste or smell as symptoms to look out for. Most people fall ill five to seven days after exposure, but symptoms may appear in as few as two days or as many as 14 days.

    • How many people have lost their jobs due to coronavirus in the U.S.?

      Over 38 million people have filed for unemployment since March. One in five who were working in February reported losing a job or being furloughed in March or the beginning of April, data from a Federal Reserve survey released on May 14 showed, and that pain was highly concentrated among low earners. Fully 39 percent of former workers living in a household earning $40,000 or less lost work, compared with 13 percent in those making more than $100,000, a Fed official said.

    • How can I protect myself while flying?

      If air travel is unavoidable, there are some steps you can take to protect yourself. Most important: Wash your hands often, and stop touching your face. If possible, choose a window seat. A study from Emory University found that during flu season, the safest place to sit on a plane is by a window, as people sitting in window seats had less contact with potentially sick people. Disinfect hard surfaces. When you get to your seat and your hands are clean, use disinfecting wipes to clean the hard surfaces at your seat like the head and arm rest, the seatbelt buckle, the remote, screen, seat back pocket and the tray table. If the seat is hard and nonporous or leather or pleather, you can wipe that down, too. (Using wipes on upholstered seats could lead to a wet seat and spreading of germs rather than killing them.)

    • Is ‘Covid toe’ a symptom of the disease?

      There is an uptick in people reporting symptoms of chilblains, which are painful red or purple lesions that typically appear in the winter on fingers or toes. The lesions are emerging as yet another symptom of infection with the new coronavirus. Chilblains are caused by inflammation in small blood vessels in reaction to cold or damp conditions, but they are usually common in the coldest winter months. Federal health officials do not include toe lesions in the list of coronavirus symptoms, but some dermatologists are pushing for a change, saying so-called Covid toe should be sufficient grounds for testing.

    • Can I go to the park?

      Yes, but make sure you keep six feet of distance between you and people who don’t live in your home. Even if you just hang out in a park, rather than go for a jog or a walk, getting some fresh air, and hopefully sunshine, is a good idea.

    • How do I take my temperature?

      Taking one’s temperature to look for signs of fever is not as easy as it sounds, as “normal” temperature numbers can vary, but generally, keep an eye out for a temperature of 100.5 degrees Fahrenheit or higher. If you don’t have a thermometer (they can be pricey these days), there are other ways to figure out if you have a fever, or are at risk of Covid-19 complications.

    • Should I wear a mask?

      The C.D.C. has recommended that all Americans wear cloth masks if they go out in public. This is a shift in federal guidance reflecting new concerns that the coronavirus is being spread by infected people who have no symptoms. Until now, the C.D.C., like the W.H.O., has advised that ordinary people don’t need to wear masks unless they are sick and coughing. Part of the reason was to preserve medical-grade masks for health care workers who desperately need them at a time when they are in continuously short supply. Masks don’t replace hand washing and social distancing.

    • What should I do if I feel sick?

      If you’ve been exposed to the coronavirus or think you have, and have a fever or symptoms like a cough or difficulty breathing, call a doctor. They should give you advice on whether you should be tested, how to get tested, and how to seek medical treatment without potentially infecting or exposing others.

    • How do I get tested?

      If you’re sick and you think you’ve been exposed to the new coronavirus, the C.D.C. recommends that you call your healthcare provider and explain your symptoms and fears. They will decide if you need to be tested. Keep in mind that there’s a chance — because of a lack of testing kits or because you’re asymptomatic, for instance — you won’t be able to get tested.

    • How can I help?

      Charity Navigator, which evaluates charities using a numbers-based system, has a running list of nonprofits working in communities affected by the outbreak. You can give blood through the American Red Cross, and World Central Kitchen has stepped in to distribute meals in major cities.

The time lag and the signs of inflammation have led many doctors to suspect the new syndrome is caused by “an aggressive, abnormal immune reaction to Covid exposure,” said Dr. George Ofori-Amanfo, chief of pediatric critical care for the Mount Sinai Health System.

For now, doctors have been administering similar treatments as they would to children with Kawasaki disease. Patients often receive a combination of steroids; intravenous immunoglobulin, an antibody-rich serum made from donated blood, pooled together from thousands of people; and intravenous aspirin.

So far, many patients have responded well, four doctors said in interviews.

One Bronx teenager said he realized something was wrong when he was awoke one night with a sharp stinging sensation in the center of his chest. It happened again when he was eating Cheerios and watching YouTube.

“My arms also started to become numb,” the teenager, David Vargas, 17, recalled.

He was hospitalized for nearly a week at Mount Sinai Kravis Children’s Hospital in Manhattan. Testing indicated that he had been infected by the coronavirus, which then had damaged his heart, he said.

“To be told your heart may be injured is an incredibly frightening thing,” said David, who passed the time while hospitalized drawing portraits of doctors and nurses.

“This thing that was happening to me felt very mysterious,” he recalled. “But I realized I wasn’t the only one in the dark. The doctors didn’t really understand my condition and why it was happening.”

He was discharged last weekend with instructions to see a cardiologist for follow-up visits. He was also told to avoid exercise for at least six months — a disappointment to David, who plays outfield and third base for his high school baseball team, and basketball as well.

As more patients with the syndrome emerge, doctors say they have been struck by the variety of ways the new illness seems to manifest.

Recently doctors have begun describing a few cases in which patients had brain inflammation or other symptoms involving the central nervous system — a part of the body that did not seem a focal point of the syndrome initially.

At least one patient has had Guillain-Barré syndrome, which is marked by temporary paralysis, according to Dr. Michael Gewitz, of Maria Fareri Children’s Hospital in Westchester County.

One boy with the new syndrome who died — a 7-year-old — had a severe headache and grew increasingly unresponsive when doctors tried to rouse him, Dr. Gewitz said.

“The child who succumbed had overwhelming brain swelling,” he said.

At Cohen Children’s Medical Center on the border between Queens and Nassau County, which has treated more than 40 patients with the new syndrome — the highest number in the state — one doctor expressed some hope that the number of new patients with the syndrome was beginning to slow in recent days.

“We’re starting to see a flattening” of the number of cases, the doctor, James Schneider, said.

But Dr. Lee, of the city’s Health Department, said it was too soon to know if the number of cases was slowing or still surging.

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