A 13-year-old living with a painful autoimmune disorder. A father who required constant oxygen to breathe due to lung scarring that occurred when he worked as a volunteer at Ground Zero after the September 11 attacks. A teenager who fled Ukraine with her family hoping to find treatment for a rare heart condition.
All three received life-changing care at Mount Sinai.
The stories of these three patients, which highlighted a year of accomplishments at Mount Sinai, were spotlighted during the annual Crystal Party fundraising event. The event, held Thursday, May 4, raised $3 million in support of the Health System. Their stories were presented in a video shown during the event.
The emotional story of 13-year-old eighth-grader Lauren Calvo, brought to the fore the particular demand for creativity when caring for pediatric patients who must endure frequent doctor visits under trying conditions. In 2020, Lauren was diagnosed with chronic recurrent multifocal osteomyelitis, an autoimmune disease that causes pain in the bones.
“Her case is quite complex and has required [the involvement of] different medical teams,” said Cemre Robinson, MD, an Assistant Professor, Pediatrics, Icahn School of Medicine at Mount Sinai. “I thought it would be great if all of us at Mount Sinai—the medical team, nurses, Child Life—could come together to create an experience for her that removed the fear from her visits. She should look forward to these visits, which requires building a personal connection.”
The Child Life and Creative Arts Therapy Department was engaged to help Loren in her journey. “What lies at the heart of Child Life is transforming the child’s experience at the hospital,” says Bethany Pincus, MA, MT-BC, LCAT-LP, Creative Arts Therapy Coordinator at The Mount Sinai Hospital. “There are so many different things that music can bring to the table. I love to song-write with patients to help them just process their emotions and allow for distraction. It allows for pain management, a feeling of freedom, and autonomy.”
Lauren’s case also benefitted from Mount Sinai’s interdisciplinary methodologies. “One of our jobs as a physician,” said David Dunkin, MD, Associate Professor, Pediatrics, “is to instill hope. Loren was fortuitous in ending up at Mount Sinai because we have experts in bone metabolism, pediatric inflammatory bowel disease, and rheumatology. We bring all those disciplines together to come up with the best care for Loren, to get her to thrive.”
“I’m eternally grateful for giving Loren her life back,” said her mother, Kim Calvo.
Next, those present heard the dramatic story of Chef James Kelly and his family, who recounted receiving the 1 am call from his Mount Sinai team, alerting him that lifesaving transplant organs had been found. After volunteering to prepare meals for first responders on 9/11, James developed fibrosis, or scarring of the lungs, thought to have resulted from his time at Ground Zero. Over time, breathing became difficult and then severe, requiring the use of oxygen 24 hours a day.
James’s son, James Patrick Jr., described his father’s predicament. “I watched him deteriorate to the point where he could barely get out of bed. It was so hard.”
“The pulmonologist told me, ‘You have the lungs of an 85-year-old man who smoked six packs of cigarettes a day,’ James recalled.”
“It’s hard to understand that the patient can’t breathe,” said Scott Scheinin, MD, Professor, Thoracic Surgery. “They’re slowly suffocating. It’s a horrible existence.” He would need a double lung transplant.
After the early morning call, the family arrived at Mount Sinai. After a seven-hour lung transplant surgery, Mount Sinai’s first, the procedure was pronounced a success.
“Twelve hours later, they were getting me out of bed,” James said. “When I took that first breath, it felt like such a clean, new breath of life. I walked and I couldn’t believe it. In certain ways, it was my first breath of life. When you’re on your second chance and you’ve gotten a second chance, it puts a new light on everything that you do.”
“It’s a huge endeavor to open up a transplant program from scratch,” explained Pamela Phillipsborn, NP-C. “James was our very first. The hospital will never forget. It’s an honor to have taken care of him.”
Of particular resonance was the story of 17-year-old Sofiia Baturina, who had never heard of Mount Sinai Kravis Children’s Hospital thousands of miles away, when Russian forces invaded her hometown in Ukraine. Born with a rare heart condition that requires life-long care and repeat surgeries, she was scheduled for her fourth in Kiev when the war broke out. The stress of the war and being a refugee put additional stress on her. She was having chest pains and shortness of breath, and time was running out.
“We were sitting in the basement, seven hours, 11 hours a day, without enough food,” Sofiia recalled. “We needed to make a plan.” The family endured a harrowing escape from Ukraine to Germany as Sofiia’s older sister in New York, Anna, made contact with the Staten Island-based Global Medical Relief Fund, seeking help. The nonprofit foundation arranged for flights out of Germany, and with one email quickly connected the family to doctors at Mount Sinai, who immediately offered to help.
Based on Sophia’s history, Barry A. Love, MD, Assistant Professor, Pediatrics, Medicine (Cardiology), determined she could be treated with a minimally invasive catheterization procedure rather than full open-heart surgery, which comes with a much longer and harder recovery. This would have been unobtainable for her in Ukraine, but Dr. Love performed a two-hour procedure from a small incision in the groin.
Today, her right heart pressure is nearly normal. Sofiia was discharged from the hospital the next day. A week later, she was walking without symptoms. Before the team at Mount Sinai intervened, Sofiia’s right heart pressure was dangerously high.
“In a week, she was her old self again,” said her sister. “It is truly life-changing what she had to go through here at Mount Sinai.”
“I’m so happy that we were able to do our little part in the middle of what is a very sad moment in world history,” said Robert H. Pass, MD, Chief of the Division of Cardiology at Icahn Mount Sinai and Co-Director of the Mount Sinai Kravis Children’s Heart Center.
“Sophia’s condition is rare, but rare is one of the things that Mount Sinai specializes in,” said Dr. Love, bringing it home. “We specialize in rare. We are able to look after patients that have the most complex and most difficult problems and do so in large part because of the generosity of our donors.”