Girl born with rare skull condition flourishing three years after surgery -
Published Tuesday, September 3, 2013 at 12:30 am / Updated at 11:01 am
Girl born with rare skull condition flourishing three years after surgery

Bridget Hospodka climbed the steps to a blue slide during recess on a hot August afternoon.

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Websites for families of children with Bridget's condition and other types of craniofacial conditions:

As a breeze blew her long brown hair, she stood on a platform, talking with another girl. Then the pair hopped down the steps, sat in the shade under the slide and dug in the sand.

Just a typical recess — a little girl playing with a friend.

But it's the type of moment Bridget's parents, John and Theresa Hospodka of Omaha, dreamed of for their daughter.

Bridget's mom and dad always wanted her to be treated like any other kid, to be accepted by others. But because of a rare skull condition she was born with, they knew that wouldn't happen easily.

The condition affected her breathing, and also her appearance. Bridget, who's 9 and in fourth grade at Holy Name Catholic School, had large, bulging eyes, and a sunken nose as a young child. People would stare, and kids would ask why she looked different.

A child asking innocent questions was one thing. But her parents knew the reactions would become harsher as Bridget grew older, particularly in the middle school and teen years.

Now three years after an operation to address her breathing problems and appearance, she has been experiencing the acceptance and kindness her parents hoped for, whether it's making new friends at school, playing on a volleyball team or getting invited to sleepovers.

Her parents and family always accepted her and thought she looked beautiful from the day she was born. And even before her surgery she was an outgoing child who knew how to make friends, but now it all happens easier.

These days her pretty blue eyes don't bulge, and her nose looks just the way it should. Her cheeks and smile look more like those of a typical kid.

The condition never hampered her mentally. Bridget earns mostly A's in school and is a strong reader.

To her mom and dad, Bridget has always been a spunky, talkative child who devours books, enjoys building forts in the living room with her brothers, Conor, 6, and Dan, 13, and holding her 8-month-old sister, Addy.

The main goal of the surgery, detailed in The World-Herald in August 2010, was to widen her nasal passages so she no longer needed to breathe through the surgically created hole in her neck. Doctors also wanted to make Bridget look more like a regular kid.

Bridget looks clean-scrubbed in the blue-plaid school uniform and white blouse she wears at Holy Name.

Her dad loves picking her up from school and watching her walk out, giggling with other girls.

Janet Sauter, her teacher last year, said Bridget is just like the other young girls at Holy Name. She loves to jump rope with her friends during recess or make up dances on the playground.

Sauter also said other students wanted to be her partner when they'd team up to work on story problems because Bridget knew the answers.

“She was a leader,'' Sauter said.

This year Bridget joined a volleyball team, and last school year she played soccer for Holy Name. Her mom and dad remember Bridget blocking a goal shot by the other team, and her teammates cheering.

The surgery also made it safer for her to participate in sports. When her eyes bulged, they were more exposed to injuries.

In January, she invited friends for a sleepover to celebrate her birthday. The girls ate pizza, watched a movie and stayed up until 11:30 p.m.

She also goes to sleepovers at the homes of friends and family, something she wasn't able to do before her surgery. The breathing hole in her neck needed to be cleaned at night, which made sleepovers at a friend's house impractical.

From the day she was born, her parents noticed she looked different.

Nothing too obvious. Just a subtle difference as they scanned her tiny face.

Within a couple of days after she was born, doctors told her parents there were problems with her skull, but they hadn't pinned down a diagnosis.

Six weeks later, doctors delivered one: Pfeiffer syndrome. It affects one in 100,000 babies.

The bones in her face and skull grew together too quickly and didn't allow her face to move forward enough before she was born.

Doctors told her parents that she would need multiple surgeries. She's had more than two dozen surgeries and procedures for her condition over the years, undergoing her first at 4 months old.

When she was a baby, her parents began taking her to restaurants, the grocery store, the library and the mall.

Her dad noticed people looking. Sometimes just a quick glance. Sometimes a long stare.

Waiting in line at stores, strangers asked questions. They made comments.

Sometimes the person was blunt: “What's wrong with her eyes?” Other times, the stranger tried to be polite: “She sure has big eyes.”

John would keep his answer simple. “She was born different,” he'd tell them. If he wasn't in a hurry, he'd tell the stranger about her condition and that it's genetic and affects how bones in the skull grow.

Her unusual features became more pronounced as she grew older: A little girl screamed when she saw 3-year-old Bridget at a McDonald's.

But the reactions never stopped her parents from taking her out.

When Bridget reached age 4, kids started asking why her eyes looked different. Her mom and dad armed her with a quick response. They wanted Bridget to learn how to handle those questions on her own.

“My bones are different,” she'd tell them.

As Bridget grew older, her outgoing personality blossomed.

If a child asked about her eyes, Bridget would ask the child's name and if they could play.

Even though the surgery three years ago was successful, everything isn't perfect for Bridget.

She still faces medical problems tied to her condition. Last year, for example, she underwent several procedures including one to address fluid building up on her spine. Last year, her parents had more than $6,000 in medical bills for Bridget not covered by insurance.

Though she no longer breathes through the hole in her neck, the opening has remained. That meant she can't swim, and when she's at a pool she has to stay on an inner tube as her parents watch closely.

She underwent a procedure last month aimed at permanently closing the hole, and someday she'll get to jump into a pool.

Until then, she's finding plenty of other ways to have fun and to make friends.

Back at Holy Name School, recess ended, and Bridget and her buddy hustled to line up and head back to class.

As she stood with her classmates in the bright August sun, Bridget smiled.

Contact the writer: Michael O'Connor    |   402-444-1122    |  

Michael is a general assignment reporter for the Living section, covering a mix of topics including human interest stories.

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