In a corner of her New Bedford home, Delilah Benitez keeps a box. Inside are items most parents hope never to save: a tiny hospital gown, a feeding tube, a cloth patch like the one that surgeons used to repair her newborn’s heart. There are photos, too, from days Delilah still struggles to revisit.
Each object tells the story of her daughter Josellah “Josie” Pina’s first weeks of life — and the open-heart surgery that saved her.
Josie had seemed healthy when she was born in August 2015. But within weeks, her parents noticed she was alarmingly small. Her father, Carlos Pina, saw she was breathing too quickly in her sleep. At her one-month checkup, doctors heard a murmur. Tests revealed a hole between the ventricles of her heart, forcing her body to work overtime.
At first, physicians tried medication and fortified feedings. But Josie kept losing weight. During an overnight hospital stay, the news came: she couldn’t wait for surgery. Without intervention, her tiny body risked organ failure.
On October 20, at just seven weeks old, Josie underwent open-heart surgery. The operation lasted hours. Waking from anesthesia was a struggle. But in the end, the repair held.
“God bless her, she has not had any issues,” Delilah said. “She has no restrictions, no medication. She’s just an amazing little girl.”
A childhood of strength
Today, Josie is 10, a lively fifth grader who plays trombone and flute, sings in the chorus, and has no fear of the stage. She is known for her kindness, her energy, and her ability to light up a room. At home, her family calls her “Bebe” for “baby.” At school, classmates call her a friend.
She does not remember the weeks that defined her infancy, but she knows the outlines of her story. She sometimes shows her faint scar proudly, once telling her class that “something special about me is I was born with not the best heart, but I had surgery, and now I have a strong heart.”
Delilah, though, remembers everything. She still checks on Josie at night, sometimes rubbing her daughter’s chest as a kind of reassurance.
“You don’t even know what you’ve been through,” she whispers.
Walking for awareness
The ordeal also reshaped the family’s path. In 2018, Delilah saw an ad for the American Heart Association’s Boston Heart Walk. She organized family and friends into a team called Josie Strong, dressing everyone in purple — Josie’s favorite color.
Year after year, their group has grown, a sea of purple shirts and bandanas winding through Boston Common. For the family, the walk is more than tradition. It is a statement of solidarity and a way to honor the doctors and researchers who make survival stories like Josie’s possible.
“A lot of people think heart disease only affects older people,” Delilah said. “But kids are dealing with this too. Parents are dealing with this every day. The research that’s being done out there is incredible, and we’re proud to be part of it.”
A story to be told
As Josie grows, Delilah keeps the box of hospital mementos tucked away, saving it for a day when her daughter is old enough to understand. For now, Josie’s world is music, school plays, and afternoons with friends. But someday, Delilah plans to open the box with her, piece by piece, so Josie can see what she endured before she was old enough to remember it.
“She has such a big heart, in every way,” Delilah said. “One day she’ll understand just how strong she really is.”