A plastics and craniofacial surgeon saved the life of an amazing child born with part of his brain growing down through the root of his mouth and out through his face.
Although children who are diagnosed during pregnancy are often terminated, Doctor John Meara was able to assure the parents of Dominic Pio Gundrum that their “exquisitely rare” child was “going to be OK.”
When Mary Gundrum, from Wisconsin, was 20 weeks pregnant, her ultrasound revealed she was having a boy. When she and the doctor looked at the screen they saw something in front of the child’s face.
The fetus had an encephalocele, which means part of his brain was exposed, covered in skin, outside his head. In his case his brain was growing down the roof of his mouth and out of his face.
After some daunting research Mary and her husband, Mark, found Meara at the Boston Children’s Hospital. They told the Boston Globe, they “were just blown away” by the work he had done on a Haitian baby in 2008.
They sent the Boston doctor their ultrasound. The next day he phoned to say, “I want you to know it’s going to be OK.”
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Meara also diagnosed their baby with something he’d never seen before.
He told the Globe, “I looked at the images, and I thought it was a very rare combination of two diagnoses.
“There was the encephalocele, and there was the Tessier facial cleft, in which the two halves of his head and face never came together.”
He called this kind of diagnoses “exquisitely rare” and said that most parents who receive this prenatal diagnosis choose to terminate the pregnancy. Meara estimated that a baby like Dominic is only born in North America every five to ten years.
Initially the Gundrum family was told that their child might not make it to birth or could die within hours of birth. However the devout Catholics, who are parents of seven other children, decided to continue with the pregnancy.
Mary (40) said, “We did a lot of soul-searching.
“I was thinking, ‘That’s my child. It’s that simple. I’m not going to take the life of my child.’”
Meara finally gave them hope.
On June 18 2012 Dominic Pio Gundrum was born at Froedtert Memorial Hospital in Milwaukee. He weighed eight pounds and seemed healthy. However, as Meara had diagnosed, he had frontonasal-dysplasia, meaning the two halves of his head had never fused.
That wasn’t the only problem. His optic nerves were underdeveloped, he was missing the part of the brain which connects the left and right cerebral hemispheres. Also doctors could not locate a pituitary gland.
At four months Dominic was brought to Boston for a consultation with Meara and his colleague, Mark Proctor, a neurosurgeon. A month later they performed a seven-hour operation, along with their team. They removed the encephalocele, closed the skull, repaired the Tessier cleft, and brought the baby’s facial features together.
Dominic wasn’t out of the woods. Meara was concerned over infection, loss of blood and bone segments.
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Meara told the Globe, “I had a lot of sleepless nights because so many things can go wrong in a case like this.”
On December 4 Dominic’s craniofacial surgery went ahead. It began at 8.30am and ended at 3.30pm and throughout the day there were ten to 20 people in the operating theater.
The operation involved removing a piece of the baby’s skull and creating a palate.
Proctor explained, “[The bone] became the floor for the brain as well as becoming the roof of the mouth.
“Before, the brain was sagging well down into the mouth.”
Meara had a three-dimensional acrylic model made of the baby’s head and face to prepare for the surgery. He made those cuts around Dominic’s eyes and upper jaw and moved the two halves of the jaw and the eyes together. He then merged the two noses into one, and two sections of the upper lip.
When the surgery was completed the doctors high-fived and hugged the parents but in the following days Dominic had seizures, developed fungal meningitis, and suffered respiratory and feeding problems. He was in intensive care for three weeks but on January 8 he went home with Mary to Wisconsin.
Dominic is now seven-months-old and the doctors and his parents are delighted with his development.
Meara said, “Developmentally, he seems to be appropriate for his age.
“I think it’s entirely possible that he will be an entirely normal little guy.”
The National Institute of Health states that children without a corpus callosum go on to lead normal lives, although they may have subtle cognitive and social difficulties.
The only element which seems uncertain is whether Dominic will ever see or be legally blind.
But Meara is optimistic.
He said, “When he’s 6 feet tall and has a head of hair on him, you may see a little line on his forehead, but that’s probably about it.”