The funds will go to the creation of Parent Survival Kits, which are distributed to parents of micro preemie babies at the Children’s Hospital of Philadelphia
By Samantha Bambino
In many ways, Bennett Pellegrino is your typical little boy. A resident of Warrington and kindergartener at Groveland Elementary School in Doylestown, he enjoys swimming, playing with Elmo, and listening to Sam Smith. He’s also a shameless flirt when it comes to blondes.
But at the same time, Bennett is far from average. Born in June 2013 at only 25 weeks and weighing in at 1 pound, 2 ounces, doctors at Abington Hospital considered him a “micro preemie.” At 10 days old, parents Mary and Greg were informed their baby had an intestinal perforation that required a risky surgery, and they were admitted to the Children’s Hospital of Philadelphia.
For seven and a half long months, 220 days to be exact, the Pellegrinos were trapped in a living nightmare as Bennett underwent five surgeries, battled sepsis and received so many blood transfusions, they lost track of the total count.
“He was a warrior every step of the way,” Mary said. “Incredible.”
Discharged in 2014, Mary and Greg spent several years navigating diagnoses that were a product of Bennett’s prematurity, including a seizure disorder. But that was the least of their troubles in 2016 when a test at CHOP revealed he had a cancerous tumor on his liver, and Bennett’s third birthday was spent recovering from surgery and undergoing chemotherapy.
Since that fall, Bennett has been in remission. Though the Pellegrinos can’t use the term “cancer survivor” quite yet, they’re hopeful the disease is gone for good. Currently, they’re trying to give their son, who has been diagnosed with cerebral palsy, a visual impairment and intellectual disability as a result of his prematurity, the most normal life possible.
“We’re navigating some really big diagnoses as he’s growing and learning,” Mary said. “But he is crazy happy.”
Over the past few years, the Pellegrinos have served as a story of inspiration for other families going through similar situations in CHOP’s N/IICU. Now they’re working to raise awareness about micro preemies and support fellow parents of medically complex children through the BennettStrong Foundation.
According to Mary, micro preemies, which are defined as babies born at less than 32 weeks, are extremely rare. So is HELLP Syndrome, the life-threatening disease that affects less than 1 percent of pregnancies. HELLP, which Mary described as “preeclampsia but on steroids,” forced her blood pressure to reach 166/110. This, in turn, forced doctors to deliver Bennett two days after she went to the hospital, concerned about a pain in the upper right quadrant of her chest and feeling “funny” while teaching at Tohickon Middle School.
For nearly eight weeks after Bennett was born, because of his size and health, Mary wasn’t able to hold her new baby, a vital bonding experience for mothers.
“I looked at him and I saw this injured baby bird who was purple and attached to all of these lines, and I just couldn’t understand that that was my son. And those were feelings that took me a really long time to be able to express without feeling guilty,” she said.
In order to help not only herself, but other N/IICU mothers, feel more connected to their babies, the foundation launched the Helping Hearts project. Fabric hearts were stitched together and distributed to CHOP families, and each received two — one for the mother, one for the baby.
“The idea is that your scent is then on that heart, and then you can swap with the child,” she said. “In the world of micro preemies, you’re born into this world with bright lights. You are poked with needles, your first sensation is most likely pain. You’re incubated. The sensations that he’s experiencing are not normal and they’re not comfortable.”
Not only did the Helping Hearts allow Mary to form feelings of love for Bennett, it helped him recognize his mother and her scent when she was finally able to hold him. The success of the project sparked further conversations between the Pellegrinos and CHOP, and in January, the foundation launched a Parent Survival Kit for N/IICU families.
Each kit includes pens and a journal, which parents can utilize in a variety of ways. They can jot down medications, names of doctors, and information about the often confusing diagnoses. Parents can also keep track of special milestones, such as when a breathing tube is removed.
“It’s also a spot where parents can write down their feelings. They can write down their thoughts, their reflections of the day. They can identify coping skills,” Mary said, adding how she and Greg used the journal every day for 220 days.
The Pellegrinos created a five-year, $25,000 agreement with CHOP to have these journals distributed in the N/IICU. To raise funds for the kits, they hosted the second annual BennettStrong Foundation Gala on Feb.16 at the Northampton Valley Country Club in Richboro.
The evening, which raised nearly $7,000, featured a guest appearance by Bennett, who looked simply dapper in his wheelchair, and a keynote speech by New Jersey police officer Brian Tretola. He met the Pellegrinos at CHOP when his wife Rachel delivered their daughter Harper, who had a 0 percent chance of survival. Harper is 5 years old today. While in the N/IICU, Mary, who had been journaling everyday, recommended the daily practice to Tretola.
“He brought his 700 page journal. That was every prayer, fear, joy, medical diagnosis. It was everything,” she said. “I was blubbering through the whole thing. Thank God I put on fake eyelashes and waterproof mascara.”
Though the Pellegrinos, and most N/IICU families, still have a long road ahead, they believe Bennett’s suffering, and more importantly his survival, was all for a reason. After hearing from individuals like Tretola, who said he wouldn’t have made it through without them, that reason has become blatantly clear — to help and inspire others. ••
For information on the BennettStrong Foundation and upcoming fundraising events, visit bennettstrong.org and facebook.com/bennettstrongfoundation
Samantha Bambino can be reached at firstname.lastname@example.org