Soon after Mariana Volkova gave birth to her son, Alex, in 2022, it was clear something was wrong with the baby. Medical staff whisked Alex to the neonatal intensive care unit (NICU), and for nearly 12 hours, Volkova and her husband, Alexander Volkov, had no idea how their son was doing. When they learned what was wrong, it sparked more questions for the couple.
“They told us that most likely our son has polycystic kidney disease,” Volkova, 27, from New Jersey, tells TODAY.com. “We didn’t know what it is.
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Is it dangerous?” The couple soon learned that Alex was struggling to live. “They told us there was almost no chance for him to survive,” she says. One of the doctors caring for Alex in the neonatal intensive care unit at Mount Sinai in New York City, Dr.
Felix Richter, asked if the couple would like to participate in research that would investigate why Alex died. The goal of the research is to help prevent future NICU deaths. Currently, doctors can only identify a cause in about a quarter babies who die in the NICU, Richter tells TODAY.
com. But Richter and his team were able to figure out why Alex got so sick: His mom had a DNA variant that no one knew could lead to polycystic kidney disease. Thanks to this discovery, the Volkovs now have a healthy baby via in vitro fertilization — and many others likely will too.
“I actually was looking for answers and blaming myself,” Volkova says. “I wanted to know the reason why.” Volkova believed her “preg.