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encephalocele

Catching up with Dominic Gundrum

by Tripp Underwood on July 23, 2014

Dominic 2When Dominic Gundrum first came to Boston Children’s Hospital late in 2012, his future was very much unknown.

He was born with a large, triangle-shaped gap running from his upper lip through the middle of his nose and forehead, known to the medical community as a Tessier midline facial cleft. His cleft was so large that fluid and tissue from his brain, normally encased in the skull, had seeped outwards, forming a golf ball-sized bubble underneath the skin of his forehead. It’s a condition called an encephalocele, and Dominic’s was so severe doctors weren’t sure how much they would be able to help him. Full story »

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Our patients’ stories: Treating Owen’s encephalocele

by Tripp Underwood on February 7, 2014

When Jennifer and Kevin Sheridan went for a routine 14-week ultrasound of their unborn son Owen, the only surprise the young couple expected was hearing if they were having a boy or a girl. But seconds after the first images of Owen registered on the grainy, black and white ultrasound screen, the Sheridans’ lives changed.

The pictures showed that the top of Owen’s head hadn’t normally closed during early development, creating a sizable opening. Without the skull to encase them, spinal fluid and brain matter seeped through the hole, ballooning and expanding under his skin. The resulting growth, called an encephalocele, threatened to kill Owen during, or shortly after birth.

“We went from thinking about what color to paint the nursery to praying we’d get a least a few minutes with him before he passed,” Kevin remembers. “It was devastating.”

In spite of the prognosis, the Sheridans went through the pregnancy normally. Over the next few months, Owen grew, as did his encephalocele. By 26 weeks, the mass was nearly as large as Owen himself. But despite the size of the growth, tests showed Owen was developing typically. In fact, he was far more active inside the womb than Owen’s older sister, Aubrey, had been a year earlier. And while Jennifer and Kevin didn’t know it then, those prenatal kicks and turns would be the first indications of Owen’s fighting spirit—a spirit that would eventually come to define him. Full story »

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Our patients’ stories: Dominic’s craniofacial surgery

by Tripp Underwood on January 28, 2013

Dominic-1Dominic Gundrum’s smile is truly special. Or, more accurately, there’s something really special about his smiles. They light up a room, even though they’re the result of a rare and extremely difficult to correct birth defect. Still, despite how atypical they seem at first, Dominic’s giggling smiles are surprisingly disarming.

 

To have something look so different—but still spread such joy—is truly unique. And, in a way, that uniqueness defines Dominic perfectly.

An uncertain beginning

During a routine 20-week ultrasound in their home state of Wisconsin, Dominic’s parents, Mark and Mary, were excited to find out if they were having a boy or girl. But when doctors looked at Mary’s grainy ultrasound they discovered more than Dominic’s sex. Though it was hard to tell for sure, the ultrasound image showed that Dominic’s skull hadn’t fused together properly early in the pregnancy, leaving a large, triangle-shaped gap running from his upper lip through the middle of his nose and forehead—a condition known in the medical world as a Tessier midline facial cleft.

But the cleft wasn’t the only issue Dominic was facing: some fluid and tissue from his brain, normally encased in the skull, had seeped outwards through the cleft, forming a golf ball-sized bubble underneath the skin of his forehead. (A condition called an encephalocele.)   Full story »

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