“It was one thing that I could do for my baby,” Jackie Rocco tells PEOPLE about her 1-year-old son Anthony
Credit: Jackie Rocco/Blythedale Children’s Hospital
NEED TO KNOW
- Jackie Rocco’s son Anthony was diagnosed with early infantile epileptic encephalopathy shortly after his birth on April 16, 2025
- During his 15-month hospitalization, Rocco arranged for Anthony to be photographed in cute outfits whenever he had a milestone to celebrate
- Anthony is now back home and thriving, Rocco tells PEOPLE
A mom found a sweet way to honor her son while he spent his first 15 months of life in the NICU: by arranging for adorable photoshoots whenever he had a milestone moment to cherish.
Of course, now that Anthony is finally back home, there’s even more to celebrate for Jackie Rocco, 42, and her husband Anthony Troiano, 39.
“It’s all I ever wanted,” says the mom from White Plains, N.Y.
“You don’t ever go into having a child expecting to be in a hospital that long. We used to joke in the beginning saying, ‘Oh, is he going to be here till his first birthday?’ Then it became a reality,” she says.
Anthony was born at 34 weeks on April 16, 2025, following an emergency cesarean section at White Plains Hospital. After being transferred to the NICU, a nurse noticed something unusual.
“She saw a little slight movement and said, ‘I think that could be a seizure,’ ” Rocco recalls.
Credit: Jackie Rocco/Blythedale Children’s Hospital
“She urged the doctor to put on the EEG [electroencephalogram] machine. They put it on and he was having many more seizures than we even saw,” she adds. “Maybe the first four months of his life, you couldn’t see the [seizures] with your naked eye.”
Anthony was later diagnosed with Early Infantile Epileptic Encephalopathy Disorder (EIEE), also known as Ohtahara Syndrome — a severe form of epilepsy with very difficult-to-control seizures, says Dr. Shaziya Shaikh, who oversaw Anthony’s care at New York’s Blythedale Children’s Hospital.
“Typically the seizures actually start pretty early in life in the first few months after birth and often can be pretty difficult to treat,” Shaikh says.
“I actually didn’t believe it,” Jackie recalls when she was first told about her baby’s diagnosis. “I was just devastated. My husband, too.”
Credit: Jackie Rocco/Blythedale Children’s Hospital
Anthony was later transferred to Children’s Hospital of Philadelphia’s (CHOP) pediatric intensive care unit in August before being taken to Blythedale Hospital for his rehabilitation.
“Medically, we made sure that his respiratory status was stable,” Shaikh says. “We tweaked his ventilator settings and actually tried to wean them down to the lowest safe settings so that it would be more appropriate for home. And then we optimized his nutrition to make sure he was gaining just the right amount of weight.”
Additionally, they made tweaks to his seizure medications and implanted a vagus nerve stimulator, a device sometimes described as a “pacemaker for the brain” that can be used to treat epilepsy, according to the Cleveland Clinic.
Credit: Jackie Rocco/Blythedale Children’s Hospital
During her son’s long hospitalization, Rocco said it could be hard to watch other babies leave as their parents posted photos that documented things she couldn’t do with her son yet.
But, taking inspiration from hospital nurses, who “would always match Anthony’s sheets” to whatever he was wearing, the mom said she started thinking, “What if we did photoshoots?”
Credit: Jackie Rocco/Blythedale Children’s Hospital
The photo sessions not only recorded his progress and milestones, they also helped give his parents a glimpse into the happy future that awaited them outside hospital doors.
“Any little thing, we would celebrate,” she says. “If he moved a certain way or smiled or stuck his tongue out, we’d make it the biggest deal.”
Plus, since there was only so much she could actually do in the NICU, Rocco says “it was one thing that I could do for my baby that [made me feel] like a mom.”
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Rocco’s favorite photo of Anthony is from his first birthday celebration.
“I told the nurses at CHOP months ago, when we started this, I said, ‘I’m doing Rocky for his first birthday,’ ” she says. “There was never a doubt in my mind because there’s nothing that captures him better.”
Seeing her son reach such a happy milestone, after not knowing if that was possible, was also “huge.”
“And then,” she adds, “the graduation one that we just did while we were leaving Blythedale was really special too.”
Credit: Jackie Rocco/Blythedale Children’s Hospital
On July 8, he finally got to go home and now his mom says he’s “doing better than ever.”
“I keep saying he’s thriving at home,” she says. “He has been a complete joy to watch.”
Credit: Jackie Rocco/Blythedale Children’s Hospital
The main goal for Anthony at the moment is to maintain good seizure control as he continues to receive care, says Shaikh.
“He is really sweet,” she says of the boy. “We all love him. He really has been a pleasure to take care of, and the family’s been wonderful. Honestly with them, it felt like we were just one big team.”
Rocco has nothing but praise for the medical professionals at CHOP and Blythedale who treated her son, calling them angels.
“They never gave up,” she says. “They would try every avenue just to get things to where they needed to be. They’re family to me at this point.”
“And the way that they really loved Anthony, that’s all that matters,” she adds. “They gave every ounce of their time to him and I couldn’t be more grateful for that.”
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