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Kentucky ICU Nurse Balanced Care for COVID Patients with Steps to Protect her Daughter with Rare Liver Disease | NEWS-Line for Healthcare Professionals

Kentucky ICU Nurse Balanced Care for COVID Patients with Steps to Protect her Daughter with Rare Liver Disease


Kentucky ICU nurse Emily Ventura was on the front lines in treating patients with COVID-19, working long and stress-filled hours and supporting colleagues as they worked to manage the pandemic. Unlike many of her colleagues, though, she confronted another set of risks and challenges caused by COVID when her shift was over. Emily’s eight-year-old daughter Cedar lives with progressive familial intrahepatic cholestasis (PFIC), a rare, genetic liver disease. The life-threatening condition, for which she has received liver transplant, leaves Cedar severely immunocompromised. Consequently, Emily takes extra precautions to protect her daughter from infection.

In patients with PFIC, a genetic defect impairs the ability of the liver to excrete bile acids. As a result, these acids accumulate in the liver and blood stream, causing liver damage that worsens over time and can lead to cirrhosis or liver failure. There are no approved therapies for PFIC, so many families resort to surgical interventions, such as partial external biliary diversions or liver transplantation as their child’s condition deteriorates. These options are invasive and present considerable risks. Cedar received a liver transplant in 2017 and now must be treated with immunosuppressive medications. A simple infection could have devastating consequences.

During the first surge of COVID cases in her area, Emily made the difficult and heartbreaking decision to socially distance from her daughter. She sent Cedar to stay with her father in a remote area of Kentucky. Mother and daughter went five weeks without seeing each other in person. During that time, Emily homeschooled Cedar via Zoom calls—a skill she never imagined her daughter would have to master at such a young age. Now that COVID rates have started to level off in her area, Cedar is once again living at home full-time, but Emily must be vigilant in taking precautions whenever she leaves the house to avoid bringing COVID into the home.

Despite these challenges, Emily, like so many ICU nurses, remained passionate about caring for patients and understood the essential role she played in this pandemic. “When I was first separated from Cedar, she had trouble understanding why I couldn’t just stop going to work,” said Emily. “I tried to help her understand that there were extremely sick patients at the hospital who needed my help.” She followed standard recommendations regarding wearing PPE while at work and immediately removed her clothes and showered when she returned home. She also received regular COVID tests and self-isolated between shifts to ensure that her home was safe for Cedar.

When Cedar was first diagnosed with PFIC at 4 months old, Emily began taking steps to help build awareness of PFIC by sharing her story. While managing her responsibilities as an ICU nurse, she founded the PFIC Network (www.pfic.org), a non-profit organization that works to improve the lives of families affected by PFIC through advocacy, education and support. The COVID-19 pandemic has brought a new sense of urgency to the organization’s mission to protect patients, and Emily now shares best practices showing parents how to keep their children safe.

“As ICU nurses we understand that taking measures such as social distancing, wearing masks, and handwashing protects everyone – including healthcare workers and our families,” she said. “Parents of children with PFIC have to be even more vigilant and careful. We all need to play a role in keeping them safe.”

To learn more about the support PFIC Network provides to the PFIC community, visit https://www.pfic.org/. For more information about Albireo’s work in developing potential new therapies for people living with PFIC, visit PFIC Voices (https://www.pficvoices.com/).

Source: PFIC Network

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