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Born with Down syndrome and an intestinal blockage, Salvatore was given a 50 percent chance of survival. Access to coordinated, high-level care close to home made all the difference.
Born at 35 weeks with Down syndrome and an intestinal blockage, Salvatore was transferred to Stony Brook University Medical Center after he developed a second blockage following surgery for the first.
“When he came to Stony Brook,” says his mother Karyn, “he had a 50 percent chance of survival. The surgery he was to undergo was a complicated ‘last resort’ procedure that lasted seven to eight hours.
It was successful, but after that we had to watch him carefully for possible complications and long-term liver damage.” While recovering, Salvatore was in Stony Brook’s Neonatal Intensive Care Unit (NICU) for two months hooked up to monitors and fed first intravenously, then through a G-tube and partially by mouth. Then one day Salvatore’s surgeon commented on how good he looked.
“That’s when I knew we had made it,” says Karyn. “The doctor had always been very blunt and honest with me, and if she thought Salvatore looked good, I knew she was telling the truth.”
During the time Salvatore was in the NICU, Karyn had only one complaint: She had never held her son in her arms. “With all the wires and tubes sticking out of him, we thought it would be impossible, but then this one amazing nurse made it her mission for me to have that kind of contact,” says Karyn. “So she swaddled and wrapped him, made sure I felt comfortable and confident, and from that point I got to hold him.”
Because of the Down syndrome and his complicated medical history, Salvatore has extensive outpatient follow-up care, seeing Stony Brook doctors at the High Risk Clinic as well as pediatric specialists in cardiology, genetics, and nephrology. Having this level of coordinated, high level care in the community makes a big difference to Karyn, a single working mom. “All of Salvatore’s Stony Brook doctors are within a 15-minute drive. Convenient for me, yes. But more important, my son has access to the care he needs.”