Nicole Whiteplaysan exhausting "what if" game beforeher family venturesinto public, running through scenarios that could be risky forherdaughter, 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-19and other viruses. Since Addison alsouses a ventilator to helpher breathe, shecan'twear a mask for added protection, White said.
Even in the absence of a pandemic, an infection could take a serious toll on Addison, but thiswinter's uptickin the number of COVID, flu andrespiratory syncytial viruses, or the "tripledemic," has put families of children with chronic health conditions or compromised immunityon higheralert. Parentsremainvigilant, constantlyassessingthe risk of exposure when even the snifflescould potentially land their childrenin the hospital,while also strugglingto provide a sense of "normalcy" whenvaccines 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.”
WHAT TO KNOW
- The "tripledemic" has createdan additional layer offear forparents 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 takea serious toll onimmunocompromised children but thetriple 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.
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A cold she caught in October led topneumonia and fluid around her lungs. She was hospitalized three times.When her brothers caught the flu, White sent her sonsto a grandparent’s house to keep Addison safe. When White'shusband and sons became ill with COVID, she and Addison temporarilymoved 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 hometo 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, andcan worsen lungfunction.She said staff hasreviewedsafety protocols with familiesin 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 doctorsaid. “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 downwardin New York over the past few weeks, butstate 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 firstand is followed by the flu, butthe illnesses overlapped this winter, said Dr. Sharon Nachman, the pediatric infectious disease division chief at Stony Brook Children'sHospital. She said her patients' parents run the gamut in terms of taking precautions, from opting to "cocoon" their children toencouragingtheir inner circle to get vaccinated.
'I’m trying to be calm'
Safeguarding their son's health is the primary concernforthe Fierosof 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, anyrespiratory virus poseda major risk to Allie, now 10.
“Every normal respiratory illness that he gothad 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 familywas under lockdownduring 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, butthe 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,” Fierosaid. “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.”
Forparents 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 ... tofind that balance of allowing their children to socialize and yet not throwing caution into the wind," said Dr. Maria T. Santiago, pediatric pulmonary chief at Cohen.
Verlin Obilet Ramos, 37, said her family stillsometimeswears masks and isolatesto protect her daughter Samantha, 2, who required open heart surgery as an infant.In November, Samanthacaught RSV, an easily transmissible upper respiratory infection, and was very sick,her mothersaid.
“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. Samantharecently 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 Seldenteen's family tries to mitigate any potential threats. His father quit his job during the early waves of the pandemicto keep him safe, said Agranil's sister, Mrinaleni Das.
The family still takes precautions, she said, includingchangingtheir clothes and showeringafter 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 mothersaid.
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 illnessesmakeit difficult for the teen to breathe when sick. Booker,a nurse, sent her daughterto 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'sanxiety, 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 herconstant vigilance.
With Darwin Yanes
By Brinley Hineman
Brinley Hineman covers the Town of Hempstead and the City of Long Beach for Newsday. She previously was a reporter in Nashville, Tennessee, and is a West Virginia native.