Valeka Riegel gave birth to her son, Zakary, in December of 2016. She would not see his face for the first time until April, after doctors completed a delicate and complex surgery to seal a hole in his skull that had caused a sac-like protrusion to obscure the front of his head. “I was first told that he may have a cyst on his cheek,” said Riegel. As it turned out, it was more than a cyst. Zakary had what is known as a congenital bony defect in his skull. Specifically, it was a hole that allowed the fluid surrounding the brain – and even some of the brain matter itself – to escape the skull, leading to a balloon-like pouch so large it covered his face.
Technically referred to as an encephalocele, it restricted his breathing, thus requiring him to stay in the neonatal intensive care unit for four-and-a-half months until he grew big enough for the surgery to correct it. “The growth covered (his face) from his nose to his mouth and when you looked at him as a baby, all you saw was a little mouth,” Riegel said in a media interview for the Cincinnati Children’s Hospital Medical Center (CCHMC). Riegel, herself a surgical nurse, lived by her baby son’s bedside for most of the time he was in the NICU, driving back home for her 12-hour work shifts on Fridays and weekends. “I knew how complicated this was emotionally, physically and medically,” she told ABC News. “As a mother I was blessed with a pregnancy and was placed in a difficult position.” Yet she held her cool until the big day. “Two hours before surgery was when severe panic set in,” she said.
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Dr. Charles Stevenson, the pediatric neurosurgeon who led the team involved in Zakary’s care, said the surgery involved much more than simply revealing Zakary’s face. Essentially, doctors were faced with the challenge of removing part of the baby’s brain, closing up the hole in the skull, and ensuring that everything happened in a way that the baby would not only survive, but also have a chance at a normal life