The birth of a baby is usually a joyous occasion, but some expectant parents have to prepare for the unimaginable – the loss of a child.

Published Sep 4th, 2019

By Lindsay Hughes
lahughes@health.southalabama.edu

The birth of a baby is usually a joyous occasion, but some expectant parents have to prepare for the unimaginable – the loss of a child.

While working as a nurse in the neonatal intensive care unit (NICU), Rene Sprague, RN, MSN, recognized that these patients needed special support. In 2017, Sprague established the Bridge Program at USA Health Children’s & Women’s Hospital.

The program supports pregnant patients struggling with fetal anomalies, which are conditions that affect a fetus or embryo and may be fatal or cause ongoing health issues after birth. These conditions include fetal heart defects, skeletal dysplasia, chromosomal abnormalities, and brain/neural tube defects. The goal of the Bridge Program is to ensure that pregnant patients and their families are fully educated on their infant’s diagnosis and the associated risks, what a NICU stay entails, and, if necessary, end-of-life plans.

“It started with me following anomaly babies through every appointment. Then I started getting consults on every high-risk pregnancy, and I realized these patients needed a support system in place before and after delivery,” said Sprague, who serves as the Bridge Program coordinator.

The care team, which includes neonatal-perinatal physicians and Bridge nurses, are involved at various stages and work closely with the maternal-fetal medicine physicians at USA Health throughout the pregnancy. The nurses attend each high-risk appointment with the patient, arrange counseling, connect patients and families to community support resources, and help create a plan for delivery and infant aftercare. They attend the patient’s delivery and remain a support person throughout the hospital stay and beyond.

The Bridge Program provides a support group to allow families to meet and share their stories, particularly those who have a history of multiple fetal losses. The program also provides education and support for parents of children with chronic medical needs.

“We want them to be able to make educated decisions regarding their children’s care and to be able to advocate for their children when they leave here,” Sprague said.

In addition to education and support, the Bridge Program helps families with funeral expenses, wheelchair ramps and other specialized equipment, gas cards and food – all provided through donations to the program.

“We have had many generous donations since the program's inception,” Sprague said. “The Bridge program has no hospital budget, so the only way we can help our families is directly through donations.”

The Bridge Program recently received a $60,000 donation from Pilot Catastrophe Services employees to help complete the construction of a Bridge suite on the high-risk obstetrics floor of the hospital. The suite is larger than regular patient rooms and features a family-size bed.

“This suite will be used by families experiencing a lethal anomaly birth and allow them to spend as much time as possible with their baby in a home-like environment,” Sprague said. “The Pilot Catastrophe employee donation will be used directly to help finish building this suite.”

The donation for the Bridge family suite came from Adjusters Give Back, a nonprofit organization that is funded solely by Pilot employee donations. USA Health Children’s & Women’s Hospital holds special significance for the Pilot family, who experienced loss firsthand earlier this year. Nikki Pilot Carlisle, granddaughter of the company’s founders, was diagnosed with breast cancer while pregnant with her third child and passed away in February shortly after the baby’s birth.

"Pilot was first introduced to the Bridge Program in 2017 by an employee who nominated Bridge as a recipient for our annual giving campaign," said Curtis Pilot, president of Pilot Catastrophe Services and Carlisle's father. "Since then, we have seen firsthand the value of this program, first with our employees and their families, most recently with our daughter and granddaughter. It is important to our family and our employees to support local programs like the Bridge so it can continue to thrive and serve families during times of need."

"What makes this such a beautiful initiative is that it hears the cry of a family asking for some step towards normalcy or greater proximity in the midst of life-threatening adversity," said Maury Carlisle, Carlisle's husband.

“The Pilot family was very grateful for the care Nikki received from everyone at Children’s & Women’s Hospital,” said Jennifer Bexley, from Pilot Catastrophe Services/Allstate Insurance. “We wanted to honor Nikki in a meaningful way that would also benefit other families who may be inpatient for an extended period of time.”

"I am so thankful that Pilot, being a family company, has chosen to perpetuate Nikki’s legacy as a mother by partnering with Rene’s vision for the Bridge program," Carlisle said. "And it is the natural thing for us to do because this project embodies Nikki’s motherly heart, but also because we want to communicate our gratitude to people like Rene Sprague and all of those at USA who went beyond normal protocols to fight for Nikki’s life and for her connection with her children."

To donate to the Bridge Program, contact the USA Health Children’s & Women’s Hospital Development Office at cwhdevelop@southalabama.edu or call (251) 415-1636.

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