Nicole White plays an exhausting "what if" game before her family ventures into public, running through scenarios that could be risky for her daughter, who is immunocompromised.
Addison, who has underlying health issues stemming from a brain injury she experienced in utero, is at a higher risk for severe illness from COVID-19 and other viruses. Since Addison also uses a ventilator to help her breathe, she can't wear a mask for added protection, White said.
Even in the absence of a pandemic, an infection could take a serious toll on Addison, but this winter's uptick in the number of COVID, flu and respiratory syncytial viruses, or the "tripledemic," has put families of children with chronic health conditions or compromised immunity on higher alert. Parents remain vigilant, constantly assessing the risk of exposure when even the sniffles could potentially land their children in the hospital, while also struggling to provide a sense of "normalcy" when vaccines are readily available and mask mandates are removed, families told Newsday.
“It’s so hard to always make those decisions,” said White, 38, of West Islip. “We’re always assessing. It’s like risk management. … It’s always that checklist in your brain.”
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WHAT TO KNOW
- The "tripledemic" has created an additional layer of fear for parents whose children have chronic conditions that make them vulnerable to respiratory illnesses.
- Parents said they are constantly struggling to keep their children safe while also attempting to provide a sense of normalcy.
- Even pre-pandemic, an infection could take a serious toll on immunocompromised children but the triple threat of RSV, flu and coronavirus poses a heightened risk.
'Medically complex' kids most at risk
Even the common cold poses a risk for 22-month-old Addison.
A cold she caught in October led to pneumonia and fluid around her lungs. She was hospitalized three times. When her brothers caught the flu, White sent her sons to a grandparent’s house to keep Addison safe. When White's husband and sons became ill with COVID, she and Addison temporarily moved out of their home.
Such are the extreme measures the Whites take to protect Addison, who has cerebral palsy, which makes her vulnerable to respiratory complications.
“Any sort of virus hits her very hard on her respiratory system,” said White, adding that Addison lives on a separate floor of their home to reduce exposure to germs. “You do fear that if she gets something like that, it means an extended hospital stay. It means scary moments. It means her stopping breathing.”
The children most at risk from the “tripledemic” are those who are “medically complex," said Dr. Joan DeCelie-Germana, medical director of the Pediatric Cystic Fibrosis Center at Cohen Children’s Medical Center. The coronavirus is inflammatory and can produce mucus, and can worsen lung function. She said staff has reviewed safety protocols with families in an effort to minimize the likelihood of getting sick this winter.
“Keeping them well and trying to help them avoid getting sick because of no longer [having a] mask mandate is very challenging,” the doctor said. “We have to sometimes pull kids out of school so that they don’t keep getting sick."
RSV, flu and coronavirus cases have been trending downward in New York over the past few weeks, but state health officials continue to emphasize the importance of taking precautions against the illnesses, including getting vaccinated and wearing a mask, especially those with underlying health conditions. Doctors also recommend that immunocompromised children wear masks to school and use hand sanitizer, among other measures.
Typically, RSV peaks first and is followed by the flu, but the illnesses overlapped this winter, said Dr. Sharon Nachman, the pediatric infectious disease division chief at Stony Brook University Hospital. She said her patients' parents run the gamut in terms of taking precautions, from opting to "cocoon" their children to encouraging their inner circle to get vaccinated.
'I’m trying to be calm'
Safeguarding their son's health is the primary concern for the Fieros of Garden City.
Alfonso, known as Allie, had two surgeries and multiple ICU stays to treat and repair his trachea, said his mother, Erin Fiero. Even pre-pandemic, any respiratory virus posed a major risk to Allie, now 10.
“Every normal respiratory illness that he got had the potential to send him to the ICU, and the majority of them did,” Fiero said. “It could’ve been anything, it could’ve been the sniffles.”
The family was under lockdown during the initial waves of the pandemic. The perpetual need to stay on guard is exhausting, Fiero said. The isolation affected the family's mental health, but the family slowly began reintroducing in-person activities to their routine after they were vaccinated. The family is somewhat back to "normal," Fiero said, but she remains cautious.
“I can’t lose that vigilance,” Fiero said. “When I hear a cough or I see a runny nose, I’m trying to be calm, but a lot of times what I see is a potential two-week hospital stay praying by the bedside of my child.”
Finding that balance
For parents trying to strike a balance between keeping their kids safe and providing a sense of normalcy, there is no one-size-fits-all approach, doctors told Newsday.
"I think there are some parents who are very overly protective, but I think the pandemic has also taught them ... to find that balance of allowing their children to socialize and yet not throwing caution into the wind," said Dr. Maria T. Santiago, the chief of pediatric pulmonary at Cohen.
Verlin Obilet Ramos, 37, said her family still sometimes wears masks and isolates to protect her daughter Samantha, 2, who required open heart surgery as an infant. In November, Samantha caught RSV, an easily transmissible upper respiratory infection, and was very sick, her mother said.
“Every time she has a cold or some type of illness, we get scared,” said Obilet Ramos, of Inwood. “The risk is always there.”
Despite that, Obilet Ramos said she has tried to give her daughter a normal life fearing that isolation could affect her. Samantha recently started going to a babysitter while her mother works.
The pandemic, and now the triple threat of viruses, also has disrupted the lives of older children.
Agranil Das, 17, has Duchenne muscular dystrophy, which poses a risk to his heart and lungs. After remote learning for two years, he now attends school in person, but still wears a mask.
The Selden teen's family tries to mitigate any potential threats. His father quit his job during the early waves of the pandemic to keep him safe, said Agranil's sister, Mrinaleni Das.
The family still takes precautions, she said, including changing their clothes and showering after coming home. “It’s just part of our daily life. It’s what we do and what we’ve been doing for three years.”
Kimberly Booker's daughter, Zandra, 14, has barely gone to school in person since the pandemic and learns virtually. She is cleared by her medical team to return to school in the spring, her mother said.
Zandra had a heart transplant as an infant, and her condition left her with a compromised immune system, including asthma, Booker, 34, of Coram, said.
Respiratory illnesses make it difficult for the teen to breathe when sick. Booker, a nurse, sent her daughter to live with her grandmother during the first five weeks of the pandemic to avoid potential exposures. The separation was "devastating," she said.
The isolation also has worsened the teen's anxiety, Booker said, adding that the hyper-awareness of the virus has been "extremely overwhelming" for her, too.
“It’s absolutely exhausting. It really is, truly,” Booker said of her constant vigilance.
With Darwin Yanes