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A STAR is born

Grace C. Mae was born with a rare genetic condition. As she fights her battle, she’s inspiring others.

February 2, 2013
By DAVID ALEXANDER - Staff Writer (dalexander@timesrepublican.com) , Times-Republican

Part one of a two-part series

When Grace C. Mae Gilbaugh was born, doctors said she would never survive. They deemed her odds of survival "hopeless." Her disorder is so rare that only about 10 cases of it have ever been reported. Her parents, Scott and Patricia Gilbaugh, began picturing the tiny white coffin with pink satin lining where they would lay her to rest.

Grace's condition, known as STAR syndrome, is a genetic affliction that warps the development of the facial features, genitals, anus, toes and kidneys. Medical literature on its effects or causes is startlingly scarce.

Article Photos

But as Grace began defying the odds, those charged with ensuring her well-being began to believe. They wouldn't give up on her. After the support they showed Patti, she decided to open a mental health service provider that focused on behavioral disorders.

She named it after Grace.

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When Patti was two months pregnant, she paid her OB-GYN a visit. It was July 2003. The jaybirds were singing, and the changing season offered the promise of all things new. Patti sat in the waiting room of the hospital in Cedar Rapids reading an old issue of "People" that detailed the 45th Annual Grammy Awards, now five months past.

With her hectic class load pursuing a PhD, she relished the time to catch up on celebrity gossip. At the awards, Korn's "Here to Stay" won best metal song, but Patti's article focused on Red Carpet hits and misses. Sweat soaked through her tank top. Having already given birth to two boys, she expected the procedure to be routine, so she waited patiently.

She didn't yet know it, but this time was different. Something was wrong.

The sonogram was abnormal. It showed something wrong with the fetus's left kidney. After finishing the sonogram, the doctor told Patti she wanted to send her to Iowa City for another one.

Patti has known her OB-GYN a long time, and her confidence often comforted Patti in times of duress. She had a certain familiarity that put Patti at ease. Perhaps it was the way she tied back her long chestnut hair with barrette the way Patti's sisters did when they were young. Either way, when she told Patti not to worry, Patti had no reason to doubt that advice. The doctor just wanted to be sure. Iowa City's hospital had more sophisticated machinery and better trained staff.

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Patti originally planned to become a teacher. But the kindness and patience she saw in her daughter's healthcare providers changed her mind. Against abysmal chances, in February 2012, Grace celebrated her eighth birthday with the advocate center that shares her namesake opening in Marshalltown. Grace C. Mae Advocate Center began operating out of Our Savior Lutheran Church on South Sixth Street but has since moved to its own office at 30 W. Main St. There, its staff conducts play therapy with the developmentally challenged.

One type of behavior disorder, post-traumatic stress disorder, is something that hits home for Patti. Because of her condition, Grace has endured multiple surgeries to allow her body to function properly. Her innocent psyche was unprepared to handle the invasive procedures needed to make her whole. She regularly speaks of "the movie playing in her head," reliving the hundreds of needle sticks and other intrusive procedures rendered unto her in her early days of life and into her school age years.

After Grace was born, Patti spent day and night in the hospital with her. The stress of watching her daughter endure what she calls "medical torture" aimed to learn more about her caused Patti to discharge her daughter against medical advice. She was now in uncharted waters.

Patti says Grace still worries incessantly about things that do not affect her - an effect of the PTSD. The anxiety of Grace's treatment even began spilling over to Patti's son Grant, now 14, who began experiencing PTSD as well. They both began to pull away socially. They began to hide behind social masks they had created, unable to show the world their true selves.

Each year, Scott and Patti allow Grace one wish. In 2012, she wished for the center to open in Marshalltown, where her grandparents live. In February, Grace will ring in her ninth birthday with a masquerade ball at the Cedar Rapids Clarion Hotel.

"Nine is a scary age for me," Patti said. "That's the age the doctors told me she would never survive until."

And there were several times Grace almost didn't make it, Patti said. As recently as this summer, Grace's health was again declining - this time inexplicably.

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Grace is a warm and affectionate little girl. Her condition is no match for the fortitude of her fun-loving nature. She dances - jazz, tap and ballet. She participates in beauty pageants, sporting faux bejeweled tiaras and elegant gowns that look like they are designed for a school aged Disney Princess. Her voice glows when she is excited.

In many ways, she is a typical 9-year-old. Her social skills and intellect are on par with other girls her age, and other than her diminutive size - at four feet tall, Grace is in the third percentile for her age - one would have no way of knowing she was any different from any other girl her age. In a bout of shyness, she buries her face into her mother's chest when she meets new people.

Grace has a fondness for both secrets and candor. At her family's Christmas party, she reveled in her newest toy: a password-protected journal with invisible ink and a secret compartment.

"Presents," she exclaims to anyone who will listen, sending the cover to the diary springing open in a grand display that must have seemed like magic to her.

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Several months fell off the calendar while Patti and Scott waited for another sonogram. On Veterans Day 2003, the couple found themselves in Iowa City. A genetic counselor met with them and asked them a battery of questions about their family history. Although they did not yet know it, their daughter had a mutation on the FAM58A gene, located on the X chromosome. The geneticist's questions perplexed them.

Patti tried to recall if anyone in her family had kidney problems. The doctor came in. After introducing himself, the doctor slathered Patti's pregnant belly with lubricant and moved the transducer wand over every inch of it. His exam complete, he wiped off the lubricant.

"Do you know why you were sent here today?" he asked.

Patti found the question odd. She thought she knew why she was there: the machines in Cedar Rapids couldn't make out the baby's kidney; they needed a better look. The doctor put his hands on the edge of the exam table and removed his white doctor's coat. A lump formed in Patti's throat.

"The baby seems to be missing a left kidney," he told her. "It's just not there."

And that wasn't all. The only kidney the fetus had was rife with cysts and misshapen. There was fluid around her heart. The doctor couldn't explain how the fetus was producing amniotic fluid. These myriad problems made it likely that Patti would have to deliver prematurely, and delivering prematurely gave her baby roughly a 65 percent chance of survival.

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After their visit to the doctor, Patti and Scott headed home to Cedar Rapids. Despondent, the pair decided they should get off the road while the shock set in. They stopped at a Perkins to get something to eat.

Inside, Patti saw a familiar face: Jerry Potter, a lieutenant with the Cedar Rapids Police Department. The two had known each other for a number of years. Jerry was having dinner with his daughter, but said he could immediately tell that something was wrong with Patti. She approached the table and told Jerry and his daughter what the doctor had told her about the baby.

Although Patti retained her composure, her distress was evident, Jerry recalls.

"Our process was just to let them know we were there. When you get news like that from a friend, it has an impact," he said. "Your heart is wrenched."

Jerry and his daughter left the restaurant while Scott and Patti finished their meals. They didn't say two words to each other the whole time. They got up to leave, having barely touched their food. Patti dragged herself to the register to pay the bill.

"Oh it's been taken care of," the server told her, pointing to where Jerry had been sitting.

Neither Jerry nor Patti had any idea that before Grace turned four, he would be the chair of board that oversees the center named after her. Looking back though, Patti said it was a natural choice.

 
 

 

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