RARE Daily

An ICU Nurse with an Immunocompromised Daughter Adapts in the Age of COVID-19

June 10, 2020

For Emily Ventura, a part-time ICU nurse at Norton Audubon Hospital in Louisville, Kentucky, the COVID-19 pandemic has not only meant working extended hours in the hospital, but it has also meant sending her eight-year-old daughter Cedar away for six weeks to stay with her father in a remote area outside the city.

Cedar, who is 8, was born with progressive familial intrahepatic cholestasis (PFIC), a rare genetic disorder that causes progressive liver disease and typically leads to liver failure. When Cedar was 5, she received a liver transplant. The problem is that because of the nature of her condition, she requires constant immunosuppressants.

In normal times, Ventura protects her daughter as if every day was flu season, limiting her contact with others and making sure she takes extra precautions against becoming infected. But with COVID-19, it became too risky for Ventura to work a 12-hour shift in an ICU treating patients infected with the virus and then go home to her immunosuppressed daughter.

The recently divorced mother sent her daughter to live with her father, a restaurant manager who was furloughed because of the virus and lives in Red River Gorge, a forested area about 120 miles east of Louisville.  

“It was awful. I haven’t been away from her for more than two days in her entire life, so it was new and, on top of that,” said Ventura. “I homeschool her. It was a little bit difficult to do from a, from a distance. We learned to use Zoom together. That became the time that we would be able to talk to each other and see each other.”

Ventura, who is also co-founder and executive director of the PFIC Network, a patient advocacy organization, said the time apart from her daughter was difficult in part because Cedar couldn’t understand why her mother couldn’t stop working.

“I wanted to see her. And that was probably the hardest part. I was just kind of getting her to understand the importance of this being my job and needing to help people at the time and that knowing she was safe made it okay for me to go to work,” said Ventura. “It seemed like the right thing to do. It was quite emotional, but she adapted well for the most part—much better than I did.”

Now Ventura works three days in a row, self-quarantines for four days, and takes advantage of Kentucky’s testing of healthcare workers at no charge to make sure she’s not infected, and she can feel comfortable about being with her daughter.

That’s her new routine and she expects to continue doing that so she can spend at least every other week with her daughter.

But she worries that another wave of the virus may surge at any time and she finds herself drawing up game plans for different scenarios. What she is coming to terms with, though, is that the pandemic is making her future as a nurse uncertain as it may become too incompatible with her caring for her daughter.

“This is my career. It’s all I know, and I love being an ICU nurse. I’m good at what I do, but there might come to a point where my responsibilities as a parent takes over and I might have to make some important changes,” she said. “I might have to change career paths, even when the coronavirus goes away. Maybe it’s just a sign that working in a high-risk health setting isn’t the best place for a parent of an immune compromised child. That’s difficult, but it might be my reality.”


Photo: ICU nurse and PFIC patient advocate Emily Ventura and her daughter Cedar,  photo by Jen Chang Photography

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