Having a child hospitalized anytime is hard enough. During a pandemic, it’s even more challenging. And for some Connecticut parents, it’s been preventing them from even seeing their children for over two months now.
For Alyssa Cercone of Milford and her 2-year-old daughter Kaylena, a single hospital room at Yale New Haven Hospital is home for now. Kaylena is there, receiving chemotherapy for neuroblastoma, and Alyssa is living there with her for as long she she’s hospitalized. She’s not allowed out for any reason, she said, and no other visitors are allowed in due to COVID-19 constrictions and concerns for immunocompromised cancer patients in the unit.
“So in order to get items you need, you have to again harass the nurses to go downstairs to meet someone,” Cercone said. “So the nurses are definitely picking up on a double load as well.”
Kaylena has autism and is non-verbal, Cercone said, and isn’t receiving her usual therapy due to service suspensions related to COVID-19. And a recent surgery to place a gastrostomy tube was delayed by virus prevention concerns as well.
The mother and daughter still have a long fight ahead. Kaylena has five rounds of chemo to get through in the next 18 months. Even if the coronavirus threat diminishes, Cercone said, they can’t afford to let their guard down.
“So for two years as things open back up, I still have to live as if you know, how everyone's living with the COVID,” she said.
For now, the one upside for the Cercones? At least they’re still together.
Heartbreaking, But Necessary
Mason Scrivines spent his fifth birthday last week alone in a hospital bed at the Hospital for Special Care in New Britain, where he’s in long term care for a brain injury. Because of COVID-19 restrictions, his family hasn’t been allowed to visit since March 16, over two months ago.
“We know and we appreciate the medical protection that Mason is given and all these kids are given,” Mason’s mother, Kelly Zieman, of Milford, said.“But I'll tell you, there isn't a day that goes by where this doesn't feel like a movie. It feels like 'The Twilight Zone.'”
Dr. John Pelegano is the Chief of Pediatrics for the Hospital for Special Care,one of only two hospitals in the entire United States treating both adult and pediatric long term chronic care patients. Its patient population is exceptionally unique and medically complex. Patients like Mason are among those at highest risk of complications if exposed to COVID-19, Pelegano said, and he empathizes with these patients and their families.
“The circumstances, it’s horrible. It's horrible from (the) perspective of the families that we care for, it's also horrible from the perspective of the children that we're caring for that they haven't been able to see each other directly.”
Photos: “We’re Angry, We’re Sad, We’re Patient”: Pandemic Forcing Families Apart
A Difficult Balance
The hospital’s restrictions were required under an Executive Order issued by Governor Ned Lamont banning visitation for nursing home facilities, residential care homes and chronic disease hospitals in the state. Since the Hospital for Special Care is defined by the State of Connecticut as a chronic disease hospital, it is subject to the order originally issued by the Department of Public Health on March 13.
NBC Connecticut asked Dr. Pelegano what he believes it will take for restrictions to ease. In his medical opinion, he said, there’s no firm timeline in place yet, but it will take a continued decline in statewide COVID-19 cases, and increased PPE and rapid screening availability for visitors before traditional visitation can resume. In the meantime, the hospital is exploring options for some families, including window visits.
So for now, instead of holding her son, these days Kelly holds onto her phone, waiting for Skype calls from a nurse. Those opportunities are precious, she said, and a lifeline for families like hers -- sending love from an agonizing distance, while dreaming of a reunion someday.
In a statement, a Hospital for Special Care spokesperson added:
“Infectious disease prevention and infection control have always been a critical component of our health care delivery system. Our infectious disease clinical leadership supports the state’s position on the visitation issue. HFSC is an extremely unique type of health care facility that fills an important role in the statewide health care system. We do not fit easily into some of the categories discussed in the community, by media or even by the Governor."
"It is important to note that the State of Connecticut, including the Governor’s office, Department of Public Health, Social Services, Office of Emergency Management, Office of Policy and Management, Office of Early Childhood and others, have provided outstanding support and cooperation to ensure that Hospital for Special Care has been included in their planning processes from supplementing our PPE supplies to advancing telehealth options or providing childcare resources for our front line employees. HFSC has supplemented both personnel and technical resources to facilitate thousands of virtual visits for patients and families over the past two months via cell phone and tablet to keep patients as connected as possible to natural support networks and loved ones.”
More With Dr. John Pelegano
Chief of Pediatrics, HFSC
Q: HFSC is one of only two hospitals in the nation with both adult and pediatric long-term chronic care patients. What’s at stake for this medically complex population?
A: “First of all I want to say that the circumstances, it’s horrible. It's horrible from perspective of the families that we care for, it's also horrible from the perspective of the children that we're caring for that they haven't been able to see each other directly since all of this started. The population of children that we take care of here at the Hospital for Special Care is a medically complex population, so many of them are ventilator-dependent. They have serious respiratory issues, cardiac issues and the like. And the coronavirus represents a particular risk to them, above and beyond what the risk is to the rest of us. And if it should enter the building and spread amongst our patients, not only our pediatric patients but our adult patients, it could have very serious ramifications.”
Q: What are some of the ways your staff is helping to bridge the visitation gap between the patients and their parents?
A: “We're doing the best we can to try to keep the families informed as to what's going on at the hospital while they're not there. Our staff contacts them at a minimum, on a daily basis to give them an update on their on their child. We are also been arranging Skype and Zoom interactions between them and their child so that they can see their child, the child can see them, they can talk to each other. And any mechanism by which we have available to us to enable them to, to have direct contact. We're looking into having window visits and trying to try to find a safe way to do that to promote more contact.”
Q: These restrictions are part of the governor's executive order, the same one that applies to nursing homes in our state. What is it going to take before those restrictions can safely ease up?
A: “That's a tough question. There's going to need to be a circumstance where we can assure that our patients are safe from this infection. And there are possibly several different ways that might happen. One would be for the incidence of coronavirus in in our area, the state, to fall to a low enough level where the risk really becomes minor. Another alternative would be to find a way to rapidly screen visitors who might be coming into the building to be certain that they're not carrying the virus when they come in. Another alternative might be personal protective equipment ora combination of all these types of factors. Exactly when that might happen, I'm afraid that's a question everyone's been talking about, and no one has a very good answer for.”
Q: The governor’s executive order is in place as long as a state of public health emergency is declared, unless sooner modified by the governor. But even after this public health emergency is declared over, many of the families you serve don't have the option of letting their guard down. What can the rest of us do to help keep them safe?
A: “Following the CDC recommendations would be extremely helpful right now. People should maintain social distancing and wear masks when they are out in public. Practice hand hygiene, hand washing, frequently. And even when this situation is over, families who are caring for children, like children returning to Hospital for Special Care, or caring for them at home, you're going to be careful to avoid exposures to individuals that are having obvious symptoms of illness, whether that's coronavirus, or standard flu or just ordinary colds. So there are a lot of measures that families can and do take, to try to protect their children.”