(NEW YORK) — Shortly after Mary Gundrum found out that her unborn son was developing with part of his brain outside his skull, she found herself searching the Internet to find out more about the baby’s diagnosis and potential treatment.
Her next search would be for infant-sized coffins.
“He was only supposed to live a couple of hours,” she said.
Instead, baby Dominic was born “screaming and kicking and full of life,” but he had a Tessier midline facial cleft, which means the sides of his face didn’t fuse together properly during early pregnancy, causing it to split down the middle.
Dominic also had an encephalocele, a rare cranial abnormality that means a sac of brain tissue and fluid formed outside the skull. His encephalocele filled the space between the cleft in his face, splitting his nose in two with a fluid-filled bubble and causing some of his brain matter to sag into his mouth.
Dominic was not in immediate danger, but potential life-threatening complications down the road for a child with his conditions included a puncturing of the sac or infection.
Today, Dominic is seven months old, and developing normally for his age. Thanks to a six-hour craniofacial surgery, the only sign of Dominic’s birth defect is the thin scar on his forehead that fades with each passing day.
“It’s super exciting to think about his future,” said Gundrum, who homeschools her seven other children in Milwaukee. “I never would have imagined such a small, tiny line that’s already continuing to fade. It’s beautiful.”
Dr. John Meara, the chief plastic surgeon at Boston Children’s Hospital, led the surgery that saved Dominic’s face this December, prompting the family of 10 to move from Milwaukee to Boston for five weeks in December.
Meara said that the occurrence of a Tessier midline cleft and an encephalocele together in one person is a rarity.
“I’d be lying if I didn’t tell you that I had a number of sleepless nights,” he said. “But I felt comfortable in the sense that we had an excellent team.”
Surgeons would have to move the brain into its proper position, close the two halves of Dominic’s face, and create a floor for Dominic’s brain (and a roof for his mouth). Blood loss during the surgery was a concern because Dominic only had about 650 ccs of blood in his entire body — about as much as “two cans of Coke,” Meara said.
But Meara and his team, including neurosurgeon Dr. Mark Proctor, rehearsed the procedure’s 37 steps on an acrylic model of Dominic’s head. They went into the operating room at 7:30 a.m. on Dec. 18, began the surgery at 9:30 a.m. and finished up at 3:30 p.m.
It took the Boston Children’s Hospital team only six hours, compared with the 18 to 20 hours it took doctors when they first started doing these procedures in the 1970s, Meara said.
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