Child Health Seth Stratton | 10 months ago

Families Get Education and Support Through Navigator Program

Sick and premature babies need eyes on them at all times – and in the Neonatal Intensive Care Unit (NICU) at Levine Children’s Hospital, they remain under constant watch until their health improves.

But with so much attention on baby, mom and dad can sometimes feel left out, frustrated and filled with questions. That’s where Levine Children’s Hospital’s Neonatal Family Navigator Program comes into play. Patient and family care navigation is a relatively new approach, and it has seen positive results since it began in 2011. Led by Callie Dobbins, facility executive of Levine Children’s Hospital, and Cindy Jacobs, RN BSN, community transition and Navigator Program coordinator, one of the program’s goals is to provide personalized guidance to families throughout a child’s time in the hospital. Dobbins and Jacobs had an article published about the program in the September 2016 issue of the Newborn Infant and Nursing Reviews journal. Titled “From Rough Waters to Smooth Sailing,” it outlines how families benefit from having a navigator. They say the program adds another level of care that enriches the family’s overall experience, from the day they arrive to the day they leave. With the extra support, families learn more about the disease and treatment plan, and they have someone who literally holds their hand along the way. 

Hope follows a difficult delivery

Like most first-time parents, Ashleigh Erb and her husband, Matthew, were excited to start a family. And just like some couples, it wasn’t that easy. They had two miscarriages with their first children. So when the couple learned Ashleigh was pregnant again, they were overjoyed. But her pregnancy and the delivery of their little girl, McKinleigh, were very difficult. “It was May 18, 2016, and I was just 29 weeks pregnant,” says Erb. “I had total heart failure and had to have an emergency C-section. I didn’t even get to meet my baby girl until she was over a day old.”

NICU experience inspires new mom

Little did the new parents know that they and baby McKinleigh would spend almost two months in the NICU. What could have been a difficult and traumatic time turned into one of hope and support thanks to Meredith Spaugh, their neonatal family navigator. “Meredith was actually a NICU mom herself,” says Erb. “And having a fellow NICU mom made all the difference.” Spaugh credits the time she spent in the NICU with her son as the reason she became a navigator.

Navigators help manage difficult emotions

During her family’s time in the NICU, Erb says she sometimes felt very alone, which made it hard to understand or remember everything the doctors and nurses told her. "As navigators, we can take the time to sit and listen to parents’ worries, joys and hopes for their baby,” says Spaugh. “Moms especially may have a myriad of emotions that they are sorting through surrounding the pregnancy, birth and NICU experience. It’s so important to validate those feelings and let the mom know it’s normal to have good days and not-so good days.” The navigators serve as a consistent liaison to connect parents to various resources, as well as provide information, emotional, developmental, transition, and community supports. “Program development included the review of strategies to enhance the overall neonatal family experience as their baby’s hospital stay typically extends over several months,” explains Jacobs. “Research has shown that parents experience feelings of anxiety, grief, fear, anger and guilt. Our intention is to address those feelings by providing anticipatory guidance and support. The goal is to assure that families are feeling comfortable and satisfied throughout their hospital stay.”  

From frightened to calm

Finding calm was especially important for mom Mary Elliot, whose baby girl, Carter Rose, was born at 28 weeks. She and her husband, Jeremy, describe her pregnancy as “frightening as hell.” The couple learned early on their daughter would be born with Down syndrome and she had a birth defect that caused her stomach to grow incorrectly. Despite the challenges, the couple says they couldn’t have asked for a better experience surrounding their daughter’s first days. “I felt like they held our hands through this,” says Elliot. “Michelle (Wilson) was my navigator. She had such a great demeanor. This was the craziest time of our lives – so scary – and she was soft-spoken and calm in the storm.”

Navigator Program to expand

Wilson, MEd, neonatal family navigator, says being a navigator has been the most rewarding job she’s ever had. “I think it is so important for any family going through a challenging time to have someone in their corner to advocate for them and to help them learn how to advocate for their child,” says Wilson. Nearly 1,000 infants and their families have participated in the Navigator Program since it began. It has helped shorten how long a patient stays in the hospital and improved patient satisfaction. The navigator role could one day expand to all pediatric services.