Last year, Valeka Rigel gave birth to a healthy baby boy. But the new mom had to wait months before she could see her child's smiling face.
That's because her son Zakary had a birth defect so rare that the Centers for Disease Control and Prevention believe just one in 12,200 babies are born with it.
The first sign that something was wrong came when the Riegel was five months pregnant. An ultrasound showed an unusual growth that doctors guessed was a cyst. After more tests, they realized it was actually an encephalocele.
Encephaloceles form when a baby's skull doesn't close properly. Brain tissue escapes through a gap in the skull bone, forming a pouch of skin outside the baby's head. Zakary's pouch formed right between his eyes.
“I just sat there and cried,” Riegel told Today about getting the news. “I said, ‘I don’t understand: I’m here for a facial cyst.’ I’m thinking a pimple.”
Doctors worried Zakary wouldn't be born alive, and a team of 22 doctors at the Cincinnati Children's Hospital were assigned to look after Riegel. But thankfully, her C-section went smoothly. Apart from the mass, Zakary was totally healthy.
But it would take months of waiting and a grueling surgery to remove the growth from Zakary's face.
Zakary had to wait until he was old enough to have the cyst removed, but living with the massive sac on his face wasn't easy.
The mass was so heavy that it was crushing Zakary's nasal cavities. Doctors had to build a custom sling to keep it lifted off his face. Zakary also needed a breathing and feeding tube in the months after his birth.
“Only a large protrusion and tiny little lips — no eyes, no nose, no eyelashes,” Riegel said about his face before the surgery.
In the end, baby Zakary spent four months in the NICU, then had to deal with a nine hour surgery to remove the sac and reconstruct his face.
It was intense, but seeing her son's face for the first time made everything worthwhile for Riegel.
“I just cried because I didn’t know he had such beautiful long eyelashes and big brown eyes," she remembers. "They were perfect on both sides.”
Zakary was home just a week after his surgery, and won't need any more treatments except to remove some extra skin when he's older. But Riegel says it took both of them a little longer to adjust to their new points of view.
“I had come to fall in love with this little boy with this big ball on his face,” she said. “He always played with it… the first couple of days, he kept swatting at his face, like ‘Wait a second, I’m not seeing it; I’m not feeling it.’”
We're glad baby Zakary and his mother are both happy and healthy!