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Overcast and Breezy Healing through the heart
2-year-old survives rare intestinal disease
On Sept. 10, 2013, Thomas Onorato and his wife, Melissa, of Franklin Square, welcomed their first child. Four days later, they almost lost him.
Thomas Kevin Onorato was born with microvillus inclusion disease, a rare genetic disorder that prevents him from digesting food and water. Fewer than 100 cases have been reported worldwide since the 1970s. Melissa’s pregnancy went normally, and she and Thomas expected that their son would be delivered healthy, though he was born five weeks premature. After she gave birth, no one believed that Thomas Kevin was sick, but Melissa knew something was wrong.
“Over the few days that we were home, everyone was like, ‘Oh, maybe she has postpartum depression,’ but I felt that something was not right with him,” Melissa explained as she held the now 2½-year-old Thomas Kevin. “I kept getting emotional, and people were like, ‘He’s fine.’ I was like, ‘I don’t know — something’s just off with him.’”
He would cry incessantly, and was unable to be comforted. He struggled to breathe. He had sunken eye sockets, and a depression in the soft part of his head.
“I was a new mother so what does that mean?” Melissa, who teaches at a middle school in Ozone Park, remembers asking rhetorically. “I have nothing to compare it to.”
Thomas Kevin weighed 6 pounds 5 ounces when he was born, which for a premature infant is a good size, Melissa said. Doctors monitored him after the delivery, and everyone believed he was a healthy baby. “Everything appeared normal,” Melissa recalled, “but he was slowly deteriorating.”
The Onoratos took him to North Shore University Hospital in Manhasset, where doctors conducted tests. Eventually Thomas Kevin’s kidneys began to fail, and he had serious breathing problems. “I thought we were going to lose him, honestly,” Melissa said. “It was very surreal; it was very scary. All I kept saying was, ‘This isn’t supposed to happen. This isn’t supposed to happen.’”
“You go into a weird zone,” recalled her husband, an office manager at All Island Dermatology. “Nothing else is going on.”
