On the day Ashley Goss delivered her baby, she begged her mother for a story.
Her son, Nolan, had been born by C-section at 26 weeks, weighing a mere 13 ounces. Goss had learned some weeks before that he was suffering from intrauterine growth restriction. He was the size of a typical 21-weeker, and doctors did not expect him to live. And that is why Goss directed her mother to comb the internet for tales of 13-ounce preemies who survived. Her mother found one and relayed the details.
“That’s what I clung to … that it’s possible. That’s what I held on to each day,” Goss says.
Nolan emerged surprisingly feisty and held on for three days, until illness overpowered his underdeveloped lungs. Goss held him. And then she grieved—publicly, through story, by way of a blog she’d started early in her pregnancy.
“That, to me, was the best therapy,” Goss says. “There’s a community out there that’s not spoken about, (the parents) who lose a baby. I found comfort.”
Amanda Bartley holds her daughter Emmylou, 2, at the Golisano Children's Hospital of Southwest Florida. Emmylou suffered a stroke in utero and is hospitalized to treat a recent complication.
Photo by Jennifer Reed
Goss is sitting outside of the neonatal intensive care unit at the Golisano Children’s Hospital of Southwest Florida. She works here now, as a respiratory therapist, which had been her longtime dream before her pregnancy and her loss. Beside her is Amanda Bartley, a NICU nurse and the mother of a baby born via emergency C-section. It happened that Goss had been on-call the night Bartley’s Emmylou was born at Cape Coral Hospital, working patient transport to the NICU. They didn’t really know each other then. But Goss would become a source of comfort for Bartley, and Emmylou would become one of the babies to inspire Goss’ passion project.
In addition to her medical training, Goss is an accomplished photographer. She decided to turn her lens on the babies in the NICU whose parents wanted her to capture their experiences. She edits and gives the families the photos at no charge, through a program she calls Ounces of Hope.
The poster created for Emmylou
“I just want to give you that moment,” she explains. She and her mom had documented Nolan’s life, preserving memories that are easily lost or blurred in the anxiety of a NICU stay. “It’s the little moments, and the little moments in the NICU are everything.”
As the staff readied the new Golisano building, Goss considered the blank walls.
“It’d be so cool to have NICU babies on the wall,” Goss thought. “And you know what? We need stories on the walls.”
Goss selected seven babies whom she’d cared for and photographed as newborns, tracked down their families and asked to take updated pictures. They are toddlers and preschoolers now—miracle babies who’ve become miracle children. Bartley’s Emmylou, 2, is one of them.
Goss asked the parents to write their children’s stories. She then created posters that include the current portrait, the child’s survival tale and the NICU snapshots. The collection, the NICU Wall of Hope, was unveiled Wednesday evening.
Goss selected children who had an array of birth experiences so that every NICU family can relate to at least something in another’s story.
“I think what I was most shocked about working in the NICU is I feel it is the most hopeful place—and that’s from a mom that lost a baby. That’s what I want to be known. I have seen babies weighing 13 ounces and 15 ounces that have lived and have thrived, and I want those stories to be told to parents who have no hope.”
The wall celebrates children like Skyler, born at 25 weeks and given a 30 percent chance of making it; Mason, who suffered a brain bleed among other complications; brothers Izzac and Exavier, born two years apart, both prematurely. There’s also Eddie, born at a mere 15 ounces. His lost twin is depicted by a purple butterfly overlaid on the photograph.
And there’s Emmylou.
Bartley’s pregnancy, aside from a pelvic issue, had been healthy. But at 38 weeks, she started having contractions and the sudden feeling that something was wrong. At Cape Coral Hospital, where her obstetrician was based, an ultrasound confirmed her baby was in distress. Her doctor performed an immediate C-section. Emmylou wasn’t breathing. The medical team resuscitated her. The NICU transporters, including Goss, whisked the baby to the children’s hospital. “I got to see her for a split second,” Bartley remembers.
Later, neonatal specialists discovered Emmylou had suffered a stroke in utero. Today, she is coping with numerous complications, including a feeding tube, but “she is the happiest, most joyful baby—she’s just amazing and she fights every day,” her mother reports.
“And that’s true for all of these babies on the wall,” Bartley continues. “They have all fought a different fight, and however long their journey lasted, it’s such a gift. … I learned in the NICU as a mom and now as a nurse that miracles happen every day, and some miracles take a little longer.”
Goss plans to continue her photography, and periodically exchange the stories that hang on the NICU Wall of Hope.
“I never want a mom to walk out of here without a baby. To see a mom with a baby, that’s my joy,” she says.