What a Family That Lost 5 to the Virus Wants You to Know

FREEHOLD, N.J. — Each morning they awake with fingers curled inward, stiffened like claws.

Their schedules are dictated by doctors’ appointments, physical therapy sessions and bouts of exhaustion. After weeks on ventilators, two siblings remain too weak to work even as their medical bills mount.

But at a table filled with several members of a tight-knit New Jersey family, the Fuscos, who lost five relatives to the coronavirus, the conversation repeatedly veers away from the chaos and pain of the last three months.

They do not avoid talk of their family’s devastating collective loss. But they also speak of a new focus: finding a remedy for the disease that killed their mother, three siblings and an aunt.

At least 19 other family members contracted the virus, and those who survived Covid-19 did not emerge unscathed.

Joe Fusco, 49, lost 55 pounds and spent 30 days on a ventilator. His sister, Maria Reid, 44, cannot shake the memory of the disjointed hallucinations that dogged her during the 19 or 20 days she was unconscious, or the terror of waking up convinced that her 10-year-old daughter was dead.

“This ain’t over,” Mr. Fusco said of the pandemic on a recent afternoon in the backyard of his home in Freehold, N.J. “This ain’t over in the least bit.”

“I want to help somebody,” he added. “I don’t want anyone else to have to lose five family members.”

The Fuscos were unwilling pioneers charting an early course through all that was unknown about a virus that has killed more than 126,000 people in the United States.

They are now trailblazers of another kind, subjects of at least three scientific studies.

Johns Hopkins University School of Medicine is conducting research that involves evaluating the DNA of the surviving and deceased members of the large Italian-American family for genetic clues. DNA from those who died will be retrieved from hairbrushes, a toothbrush, a blood sample and tissue from an unrelated gallbladder surgery.

Each Thursday, Elizabeth Fusco, the youngest of the 11 children, donates antibody-rich blood plasma that is used to treat patients with the virus to determine if it can help boost their immune response.

“We know another wave is going to come,” Ms. Fusco said. “It’s inevitable. Whatever will help this world is all I care about.”

Their help may prove useful well before the predicted second wave hits as states like Florida and Texas confront an alarming surge in new cases.

The Fusco family’s trauma began just before the state’s lockdown, as a slow cascade of closures marked the start of a new normal.

On March 13, Rita Fusco Jackson, 56, became the second person to die of Covid-19 in New Jersey, which has since recorded 14,992 deaths, making it No. 2 in the nation behind New York for virus-related fatalities.

Within a week, her mother, Grace Fusco, 73, and two brothers, Carmine, 55, and Vincent, 53, had also died. Grace Fusco’s sister on Staten Island died weeks later.

Their story became an urgent, cautionary tale about the potency of the disease and the importance of staying apart at a time when social distancing was still a novel concept.

During the first week of March, Carmine Fusco, the eldest son who was visiting from Pennsylvania, had described feeling chilled during a routine Tuesday dinner in Freehold that drew about 25 family members, his siblings said.

The precise source of the extended family’s infection is unclear, said Mr. Fusco, a horse owner like his father and brothers who had spent time in the weeks beforehand with both brothers who died. He recalls waking up feeling “beat up” the morning after the dinner, which was held at the house where his mother lived with three of his siblings and their families.

He was admitted to the hospital days later, beginning a medical odyssey that would last 44 days. Much of the treatment was experimental, he said, and involved trial and error.

“When I was leaving the hospital, the doctor said, ‘You don’t realize the debt of gratitude the world owes your family,’” said Mr. Fusco, the father of three children aged 10 to 18.

As news accounts of their story swept the globe, the family was cited by state health officials as a prime reason for staying apart.

Still, even as they were being held up as the family no one wanted to become, Elizabeth Fusco was stepping into the role of the little sister everyone might hope to have.

Ms. Fusco, 42, and her daughter were among those who contracted the virus; like many other family members, they never showed symptoms.

With four people already dead, two on ventilators and a sister hospitalized and receiving oxygen, Ms. Fusco emerged as a ferocious advocate, even as she feared for her own daughter, Alexandra, who is 12 and was born with a serious health condition, congenital diaphragmatic hernia.

“They would tell me to calm down,” she said. “No. I’m not going to calm down. Tell someone who didn’t lose a mom, a sister and two brothers in a matter of less than seven days to calm down.

“Tell me how you’re going to save my brother and sister.”

The family held a four-person funeral on April 1. They remain anguished that the two siblings who were on ventilators at the time were not there and are planning a memorial celebration and burial after a full Mass in early August.

Ms. Fusco said she temporarily shoved mourning aside. “I consumed my time with — I’m not going to lose another one,” she said.

Desperate, she and other relatives pushed doctors to try a variety of treatments: remdesivir, convalescent plasma, hydroxychloroquine.

“I don’t care if you were giving them rat poison — if you told me that that was going to fix them,” she said, her voice trailing off.

  • Updated June 24, 2020

    • Is it harder to exercise while wearing a mask?

      A commentary published this month on the website of the British Journal of Sports Medicine points out that covering your face during exercise “comes with issues of potential breathing restriction and discomfort” and requires “balancing benefits versus possible adverse events.” Masks do alter exercise, says Cedric X. Bryant, the president and chief science officer of the American Council on Exercise, a nonprofit organization that funds exercise research and certifies fitness professionals. “In my personal experience,” he says, “heart rates are higher at the same relative intensity when you wear a mask.” Some people also could experience lightheadedness during familiar workouts while masked, says Len Kravitz, a professor of exercise science at the University of New Mexico.

    • I’ve heard about a treatment called dexamethasone. Does it work?

      The steroid, dexamethasone, is the first treatment shown to reduce mortality in severely ill patients, according to scientists in Britain. The drug appears to reduce inflammation caused by the immune system, protecting the tissues. In the study, dexamethasone reduced deaths of patients on ventilators by one-third, and deaths of patients on oxygen by one-fifth.

    • What is pandemic paid leave?

      The coronavirus emergency relief package gives many American workers paid leave if they need to take time off because of the virus. It gives qualified workers two weeks of paid sick leave if they are ill, quarantined or seeking diagnosis or preventive care for coronavirus, or if they are caring for sick family members. It gives 12 weeks of paid leave to people caring for children whose schools are closed or whose child care provider is unavailable because of the coronavirus. It is the first time the United States has had widespread federally mandated paid leave, and includes people who don’t typically get such benefits, like part-time and gig economy workers. But the measure excludes at least half of private-sector workers, including those at the country’s largest employers, and gives small employers significant leeway to deny leave.

    • Does asymptomatic transmission of Covid-19 happen?

      So far, the evidence seems to show it does. A widely cited paper published in April suggests that people are most infectious about two days before the onset of coronavirus symptoms and estimated that 44 percent of new infections were a result of transmission from people who were not yet showing symptoms. Recently, a top expert at the World Health Organization stated that transmission of the coronavirus by people who did not have symptoms was “very rare,” but she later walked back that statement.

    • What’s the risk of catching coronavirus from a surface?

      Touching contaminated objects and then infecting ourselves with the germs is not typically how the virus spreads. But it can happen. A number of studies of flu, rhinovirus, coronavirus and other microbes have shown that respiratory illnesses, including the new coronavirus, can spread by touching contaminated surfaces, particularly in places like day care centers, offices and hospitals. But a long chain of events has to happen for the disease to spread that way. The best way to protect yourself from coronavirus — whether it’s surface transmission or close human contact — is still social distancing, washing your hands, not touching your face and wearing masks.

    • How does blood type influence coronavirus?

      A study by European scientists is the first to document a strong statistical link between genetic variations and Covid-19, the illness caused by the coronavirus. Having Type A blood was linked to a 50 percent increase in the likelihood that a patient would need to get oxygen or to go on a ventilator, according to the new study.

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

      The unemployment rate fell to 13.3 percent in May, the Labor Department said on June 5, an unexpected improvement in the nation’s job market as hiring rebounded faster than economists expected. Economists had forecast the unemployment rate to increase to as much as 20 percent, after it hit 14.7 percent in April, which was the highest since the government began keeping official statistics after World War II. But the unemployment rate dipped instead, with employers adding 2.5 million jobs, after more than 20 million jobs were lost in April.

    • 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 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.)

    • 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.

She called the governor on his cellphone. She and her mother’s cousin, Roseann Paradiso Fodera, a family spokeswoman, were on a first-name basis with congressional aides. They lobbied anyone who would listen for access to experimental medicines, and, later, for autopsies that never happened.

In that mad flurry, they were buoyed by neighbors, acquaintances half a world away and lifelong friends.

“You’d open your door,” said Dana Fusco, Joe’s wife. “You’d have groceries at your door. You’d have meals. The community was truly amazing.”

The nurses and the medical staff at CentraState Medical Center, the hospital in Freehold where Grace Fusco and five of her children were treated, served as the family’s eyes, ears and loving hands at a time when visitors were not allowed inside.

“For 44 days, every three to four hours, I was on the phone with them,” Dana Fusco said. The hospital declined to comment, citing privacy concerns.

When her husband awoke on Easter Sunday, she asked that he not be immediately told of the deaths. Once he was stronger, she was allowed a visit to tell him in person.

To the Fuscos, the virus’s path showed little logic. An infected relative who is a heavy smoker showed no symptoms, and two older uncles with myriad underlying health problems rebounded in about a week. Several of the sickest family members had no serious underlying health problems, Mr. Fusco said.

More than three months later, a numb calm has set in.

“Like it didn’t happen,” Ms. Reid said. “It’s just they’re not here.”

Dwelling on the past, she said, is a luxury she does not have. “I’ve got to move on,” said Ms. Reid, who, along with her husband and daughter, shares a house with Joe’s family. “I’ve got a young daughter.”

Joe Fusco said he remained frustrated by the lackadaisical attitudes of people shown crowding together near beaches or outside bars without masks.

“These idiots are out there and not taking precautions,” he said. “Not wearing a mask. And not doing what they’re supposed to do. They’re out of their minds.”

Doctors say patients who recover from Covid-19 frequently need to rebuild muscle strength, and some may struggle with a range of respiratory, cardiac and kidney problems or be at increased risk of blood clots and stroke. Some patients who experienced delirium while on ventilators may be at greater risk of depression.

And those placed in induced comas also may lose muscle tone in their hands, causing fingers to clamp shut.

Much about the recovery from Covid-19 is unknown, said Dr. Laurie G. Jacobs, chairwoman of the Department of Medicine at Hackensack University Medical Center, which is setting up a clinic for patients recovering from Covid-19 to better understand, track and treat their varied needs.

“There’s a desperation for answers,” Dr. Jacobs said.

Mr. Fusco said he found the seeming absence of uniform guidance for doctors treating patients recovering from Covid-19 frustrating. His doctor has ordered a battery of tests, he said, but his sister’s has not.

“You’d think there would be some sort of protocol to follow, but there’s not,” he said.

When Grace Fusco got sick enough to need a ventilator, she asked for a pillow that had belonged to her husband, who died in 2017, her rosary beads and a scapular, a small cloth pendant worn during prayer. She reminded her daughter to bring a tray of chicken the next night to the program for homeless people that she cooked for each week.

“She said, ‘Don’t worry. I’m going to be OK,’” Elizabeth Fusco recalled. “Tell everyone I love them.”

She never awoke, and never knew that any of her children had died.

“It would have killed her,” Joe Fusco said. “She was always — and I’m the same way — there’s a sequence to life, and burying your kids is not part of it.

“It’s not the way it’s supposed to go.”

Source link

Leave a Reply

Your email address will not be published. Required fields are marked *