CT Post: Coronavirus crisis has ‘upped the ante’ for parents of NICU babies

By:Amanda Cuda      Article appeared in CT Insider on April 27, 2020

 

Katie Horan never thought she would deliver her second child early. After all, her first son, Hunter, was born at full term and she had been given indication anything would be different from her second pregnancy.

But the 32-year-old Horan started bleeding unexpectedly on March 5. Her family rushed to the hospital and learned that Horan would likely have to deliver her child, whom she’d only been carrying for 23 weeks.

“Our baby was on the brink of viability,” said Horan, a Redding resident.

After 48 hours of worrying, and fraught discussions with neonatologists, Horan’s second son, Brady, was born at Danbury Hospital. Before delivery began, a team from the hospital’s neonatal intensive care unit assembled at Horan’s bedside. Brady was stabilized using a breathing tube, and taken to the NICU, where he was expected to stay until his due date in June.

It was a shocking, brutal experience for Horan and her husband Zach.

“Our NICU 101 crash course from the doctors and nurses was summed up simply as, ‘Buckle up and hold on tight, ’cause you’re about to go for a roller coaster ride,’ ” Katie Horan said.

But even the doctors had no idea how unwieldy that roller coaster was about to get.

About a week into Brady’s stay in the NICU, the COVID-19 pandemic began to escalate and hospitals throughout the state tightened visitor protocols to help prevent the spread of the illness. In many cases, only one parent is allowed to visit the hospitalized child, and volunteers — who offered support to families and children — are not allowed in the hospitals in most cases.

As a result, an experience that was already emotionally draining has become even more so.

“There’s all this added anxiety of ‘Am I bringing extra germs in?’ ” to the hospital, said Marisela Esposito, board president and parent support mentor of the Darien-based Tiny Miracles Foundation, a nonprofit charity dedicated to helping families of premature babies.

Esposito said restrictions on NICU parents now include only allowing one parent at a time to visit the child; having parents wear masks during visits; and parents not being allowed to return for a second visit once they’ve left the NICU for the day.

Some of the parents Esposito has worked with try to extend visits with their children for as long as possible. Esposito said one mother has been walking 45 minutes to the hospital to see her child in the NICU, because she’s terrified to take the bus, due to the pandemic.

Hospital officials agreed the pandemic, and the restrictions it’s necessitated, can be particularly challenging for parents who are already weathering a tough situation, but they’re required to help keep everyone healthy.

“I’m sure they’re upset, but I think they know it’s for everyone’s safety,” said Julie Brown, nurse manager of Bridgeport Hospital’s NICU.

At Bridgeport Hospital, restrictions have included limiting visitors to parents only, and permitting only one parent at a time. The hospital is part of the Yale New Haven Health System, which also includes Yale New Haven Hospital. Katherine Buck, neonatologist at Yale New Haven Hospital, agreed with Brown that parents have been mostly understanding about the restrictions.

“The mood has been good overall,” said Buck, who is also assistant professor of pediatrics at the Yale University School of Medicine. “We’ve been doing a lot of reassuring and we’re doing all we can to keep people calm.”

Further complicating the situation is it remains unknown whether premature babies are at higher risk of getting COVID-19 or developing a serious case of the illness.

“It’s a tough question because I don’t think there’s enough information yet to say yes or no,” Buck said. “Certainly, we’re taking precautions as though the babies are at increased risk, but we don’t know the answer.”

For Horan, the pandemic has intensified what already would have been a harrowing experience. Even before COVID-19 escalated in the state, Danbury Hospital has only allowed four people on the NICU visitor list for each family (aside from parents) and that list could never change.

After the pandemic spread in Connecticut, only parents were allowed. By March 26, Horan said, only one parent was allowed to visit per day.

“Being a NICU parent is upsetting, exhausting, and sometimes confusing,” Horan said. “Having Zach by my side in the first 19 days of Brady’s life — in which we received a lot of difficult news — was comforting. My heart hurts for the parents who had babies born after us, who are in the NICU one at a time and have to receive painful news while the other parent listens on FaceTime or the phone (and are) unable to hug or hold each other.”

Even with each other’s support, those initial days were tough, she said.

“During the first week, there were several days I walked in the front door crying,” Horan said. “Hunter (her older son) didn’t understand why, but he knew mom was upset and he started giving out extra hugs on a regular basis. It’s even more difficult because the kids were supposed to be 22 months apart, not 18.”

On March 30, the Horans learned Brady would require surgery to stabilize his hydrocephalus, which is a build up of fluids in the brain. He needed to be transferred to Connecticut Children’s Medical Center in Hartford.

Katie Horan said, in the best environment, Brady’s premature birth and NICU journey would have been sad and nerve-wracking, but the pandemic “has really upped the ante on this unfortunate experience.”

She’s holding her breath through the rest of her son’s NICU stay, hoping the hospital’s guidelines are not further tightened.

“We hope they don’t completely prohibit parents from visiting the NICU, but I have heard of NICUs elsewhere in the country implementing that restriction,” she said.

In the meantime, Horan and her husband alternate days visiting their son in the NICU. For her, one of the toughest parts is driving home alone from Hartford, emotionally and mentally exhausted.

“The roller coaster analogy is very real,” she said. “In the early days of Brady’s life, we never knew what kind of day he’d be having. Luckily, at 6 weeks old, he has finally started to be more stable and predictable in his day-to-day needs. That takes away a bit of the emotional strain.”