For four months after her son’s birth, mom Valeka Riegel could not look into her baby’s eyes. But the reason had nothing to do with how much she loved him. Her son was born with a rare congenital disability that left a sac covering the infant’s face from his forehead down to his upper lip. And all Riegel could see when she looked at her little boy was his tiny mouth. Her son, Zakary, has now reached his first year birthday. And after an extremely long surgery, the sac has been removed. And he is adorable!
“I never in a million years thought we would be here a year later,” Riegel told TODAY.
Riegel lives with Zakary in Oak Harbor, Ohio. And she recalls how happy she was to see her baby’s face for the first time after doctors finally removed the sac.
“I just cried because I didn’t know he had such beautiful long eyelashes and big brown eyes. They were perfect on both sides.”
Riegel knew about the congenital disability when she went in for her ultrasound during her fifth month of pregnancy. Doctors thought it was a cyst on her son’s cheek, which did not worry them much. But after more thorough testing and a fetal MRI, they realized it was a birth defect called an encephalocele. The condition did not let the unborn baby’s skull close properly as it developed. This allowed his brain tissue to escape and it collected in the sac.
One in 12,200 babies born in the United States get this birth defect each year.
She remembers when she first learned about the sac covering her baby boy’s face.
“I just sat there and cried,” Riegel, who is 46, remembered. “I said, ‘I don’t understand. I’m here for a facial cyst.’ I’m thinking a pimple.”
Her initial team of doctors needed help to solve the problem, so they referred her to the Cincinnati Children’s Hospital Medical Center.
The doctors had never seen anything like it. They assigned a massive team of 22 doctors to the case. Some doubted whether he would even be born alive.
But in late December 2016, Zakary surprised all the doctors when he was delivered safely via a C-section.
Reigel was nevertheless in shock when she first laid eyes on her boy.
“Only a large protrusion and tiny little lips. No eyes, no nose, no eyelashes,” the mother wrote on the hospital’s blog.
She worried if he’d be able to breathe.
But Zakary was strong. He spent four months at the hospital’s NICU. And in April 2017, he was big enough to handle the surgery. It took doctors nine hours to remove the sac from his face and repair the gap.
When his mother first saw his face, she said it was “amazing.” She looked into her son’s eyes for the first time four months after he was born.
“I had come to fall in love with this little boy with this big ball on his face. He always played with it.”
Although he does have some surgery scars, Riegel said her son’s prognosis looks “very great.”