Gratitude Stories – Sebastian
A Tale of Hope and Healing at Hasbro Children's Hospital
When 22-month-old Sebastian Scolamiero's playful energy began to wane, parents Stephen and Mary noticed some other subtle but concerning changes in their son. Their typically vibrant toddler became unsteady and began to hesitate, clinging tightly to their hands―unwilling to run or jump as he normally would. Alarmed, the Scolamieros brought Sebastian to see his primary care physician who referred them to a neurologist.
Weeks later, on April 28, 2023, everything changed.
While at work as an intensive care nurse, Mary received the call that would rearrange their world. Sebastian's daycare reported that he had experienced shaky movements upon waking from a nap, prompting them to call 911.
"I'll never forget that day," Mary recalls. "One moment, everything seemed fine. The next, our lives were turned upside down."
At the Newport Hospital emergency department, initial assessments seemed hopeful. But a CT scan unveiled a devastating reality: Sebastian had a large mass in his brain. Stephen and Mary grappled with shock and disbelief.
Plans were made quickly to transport Sebastian to Hasbro Children's. Upon his arrival, he was whisked off the Pediatric Intensive Care Unit, where the medical team prepared for an extensive MRI to assess the tumor.
Amidst the chaos and uncertainty, Laura Moynihan LICSW, a clinician social worker at Hasbro Children’s, became a beacon of hope for Sebastian's parents. Though her shift had ended, Laura chose to stay, offering Stephen and Mary solace and comfort. When complications arose leading to a code blue, Laura remained by their side, her presence a calming anchor in a storm of uncertainty.
"Laura was our lifeline," says Stephen. "Without her, it would have been astronomically worse. She provided the emotional support we desperately needed."
Sebastian underwent multiple surgeries, including the removal of the brain tumor and the placement of a shunt. Throughout this difficult journey, the family felt confident in the multidisciplinary team whose dedication went far beyond medical expertise.
Among others, the Scolamieros are tremendously grateful for the extraordinary commitment of Petra M. Klinge, MD, PhD, Director of Pediatric Neurosurgery, and Rishi R. Lulla, MD, MS, Director of Pediatric Hematology/Oncology.
Both Dr. Klinge and Dr. Lulla sat down with Mary and Stephen to review Sebastian’s initial imaging. "They sat down and went over all the imaging to show us the tumor. They broke everything down for us, showed us the MRI images, and answered all our questions. You could tell they genuinely cared."
Dr. Klinge interrupted her vacation to oversee Sebastian's care. "She came in like a fresh wind," Mary reflects. Stephen adds, "She apologized for not being there sooner, even though she was on vacation. She stayed with us for days after the surgery to ensure Sebastian was stable before asking if she could return to her family. Her dedication was beyond anything we expected."
The Scolamieros continue to look to Dr. Lulla for his expert opinion on Sebastian’s imaging results. In one instance, Dr. Lulla called Stephen and Mary after one scan indicated a tumor reoccurrence—even before their office visit—to report that he was gathering a tumor review committee to look further into the MRI results. The results were ultimately negative. “We trust him completely," says Mary.
The nursing staff also left an indelible mark on the family's hearts. Knowing Sebastian's love for Minions, one nurse drew a picture of the cheerful yellow characters and taped it to his crib. That simple act of kindness meant the world to them. "We have it framed and hanging in his room," Mary shares, tears welling up. "It's a constant reminder of the compassion we experienced."
Sebastian's care extended beyond neurosurgery. Endocrinologist Kevin J. Scully, MD, closely monitored Sebastian due to the tumor's proximity to his pituitary gland. A damaged or compromised pituitary gland could pose challenges, like diabetes insipidus— a condition where the body cannot regulate water balance, leading to excessive urination and extreme thirst. However, with careful management and individualized care, Sebastian thrived. "Dr. Scully is amazing," says his mother. "He answers all our questions and accommodates Sebastian's needs, especially considering his anxiety around doctors."
The Tomorrow Fund Clinic became another pillar of support, offering continuous care and resources. In addition, the ophthalmology team coordinated procedures to minimize Sebastian's stress by scheduling them alongside his routine MRIs while he was under sedation. Throughout their journey, the family found solace in the integrated approach taken by Hasbro Children's.
"Hasbro Children's didn't just treat Sebastian’s medical condition; they cared for his emotional well-being and ours," Stephen shares. "Every person made a profound difference. Their empathy and dedication saved our son's life and guided us through an unimaginable situation."
Today, Sebastian is a thriving three-year-old, full of energy and joy. Just a day before his third birthday, he celebrated his one-year tumor-free milestone—a momentous occasion marked with a grand celebration. "He's remarkable," his mother beams. "He loves riding his bike, playing with friends, and he's known as the 'Best Hugger' at daycare."
The journey has not been without its challenges. Sebastian experiences PTSD related to medical environments, a testament to the trauma he has endured. But with the support of Child Life Services and creative strategies like visiting the hospital's play park, his anxiety is gradually diminishing.
As they look to the future, the Scolamieros are focused on supporting Sebastian’s growth and happiness, even as they continue to navigate related health challenges. Laura, ever the supportive presence, continues to stay connected, sharing resources and celebrating milestones with them.
"We've been through so much, but we're stronger for it," Mary reflects. "Sebastian has taught us about courage and the power of kindness. We are forever grateful to everyone who played a part in his healing."