The Intelligencer: ‘No One is Prepared for It’

Warrington parents of ‘micro preemie’ helping others struggling with medically complex infants

Bennett Pellegrino, of Warrington, was born 15 weeks premature and has had a host of medical problems, including liver cancer. His parents have started a foundation to support other families with medically complex babies and the Children’s Hospital of Philadelphia.

By Freda Savana, The Intelligencer (Click here for online version)

Bennett Pellegrino came into the world 15 weeks premature, weighing just over 1 pound and measuring 12 inches.

“He was born perfect, just too young and too early,” said his mother, Mary Pellegrino.

Known as a micro preemie, the tiny infant spent 7 ½ months in the newborn/intensive care unit at Children’s Hospital of Philadelphia. He had had two surgeries — one to repair an intestinal perforation and the other to close a duct in his heart — before he reached the tender age of one month.

“Every 15 minutes (he survived) was a victory,” said his mother, a special education teacher at Tohickon Middle School in the Central Bucks School District.

Inspired to help other families who have endured the same almost unimaginable struggles, Greg and Mary Pellegrino, of Warrington, created the BennettStrong Foundation.

The Pellegrinos’ goal is to raise $25,000 in five years to fund such initiatives as a project created by CHOP neonatal intensive care nurse, Kasey Kernke, that offers parents soft “scent hearts” to help them bond with their infants, and to provide journals for families to note their thoughts and feelings. Over the next few years, the Pellegrinos also hope to add free parking passes and food vouchers to CHOP’s kits for parents with children in the NIICU.

The nonprofit will hold its inaugural fundraising gala Feb. 24 at the Northampton Valley Country Club in Richboro. All proceeds will benefit CHOP’s neonatal/infant intensive care unit (NIICU) and provide journals and pencils for parents’ “survival kits.”

The Pellegrinos’ journey continued to unfold when, after months of, as his mother said, “learning to parent in the NIICU,” Bennett was, at long last, allowed to go home. While they knew their son would face a lifetime of challenges, including cerebral palsy, the Pellegrinos believed they were finally starting their life together outside the sterile confines of a hospital.

But in May 2016, just before his third birthday, Bennett began having fevers, said his father. He was irritable and didn’t want to sit in his “activity chair.” Soon, he was readmitted to the hospital, where doctors were able to get those issues under control. Still, Bennett wasn’t well. A full body scan found a mass in his young liver.

“The cancer diagnosis came out of nowhere,” Greg said. Half of Bennett’s liver was removed. He then underwent two rounds of chemotherapy. A recent screening found no sign of the disease and Bennett is considered to be in remission and medically stable. “He’s doing great,” said his dad.

Bennett, who uses a wheelchair, receives a range of therapies to help with his developmental delays and neurological challenges. “Each day, we try to help him out the best we can,” Greg said. In the fall, he’ll start kindergarten.

“It’s a unique experience not having control of the trajectory of your child’s life and safety,” Mary said. “No one is prepared for it. We needed two nurses and a respiratory therapist just to get Bennett out of bed.”

Casey Hoffman, a clinical psychologist with CHOP’s NIICU and neonatal follow-up program, said the Pellegrinos’ efforts are commendable and will help many families through the same heart-wrenching journey.

Having a baby in the NIICU is an experience that’s “filled with intense emotions, which can range from fear, anxiety, despair and helplessness to hope, elation and gratitude … all on the same day,” said Hoffman, in an email. The journals, she added, can help parents process their emotions and experiences.

Through the work of foundations such as BennettStrong, CHOP can expand its support of families during an extremely difficult time “and do it in the most meaningful way possible,” Hoffman said. She credited the Pellegrinos for their resilience, passion and persistence in creating the organization. “I am honored to be a part of that mission.”