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A STAR is born

Editor’s note: This is part two of a two-part series

This summer, Grace Gilbaugh’s health began to worsen. The 9-year-old regularly has bouts of sickness. It is part of the ebb and flow of her rare genetic condition – STAR Syndrome. There is so much abnormal about her anatomy she rarely makes it more than a few months without needing medical attention. But this summer was different. One night around 3 a.m., Grace began vomiting; the vomit was a strange electric green color. Patti, Grace’s mother, called her doctor.

“You don’t even have time to wait for an ambulance,” she told Patti. “You need to go.”

Grace’s organs were failing, and her doctors didn’t know why.

Patti began to feel a familiar stress, one that always looms: her daughter might die and her doctors wouldn’t be able to tell her how to prevent it. It’s a stress she always faces.

“When do I take her to the hospital?” Patti said. “One minute she will be fine, and 5 minutes later, she will be on her death bed.”

Grace’s rare genetic syndrome often flares up, leaving her missing school for days at a time. And even when she is in school, those in charge of her need to monitor her more closely than they monitor other students, especially when she uses the bathroom. Since Grace’s condition left major malformations on her anus and genitals, she required a battery of surgeries to allow her to dispose of waste. Those surgeries, and various other medical procedures, took their toll. They left Grace with post-traumatic stress disorder.

A change of scenery was the only thing doctors could offer by way of a solution. Sometimes, that can help, they said. It was cold comfort. Patti packed their bags and hoped it wasn’t the last trip she got to take with her daughter. They headed to California.

—

Jerry Potter, chair of the board for the Grace C. Mae Advocate Center and long-time friend to Patti, said it’s hard not to share Patti’s vision for the center. Knowing her passion spurs everybody on staff.

“It’s an easy vision to catch,” he said of the genesis of his involvement with the center. “Seeing Patti’s heart and knowing the good things that came from those dreams made it easy to help out.”

He said the center is part of a larger picture to bring healing to those in need, which is very fulfilling to him. If there is an aspect of his job that is less-than-rewarding it’s that, because of confidentiality, he doesn’t get to see the success and growth of the center’s clients first hand.

The center is now thriving with six offices in Iowa: Washington, Cedar Rapids, Van Horne, Chariton, Marengo and, as of early 2012, Marshalltown. Its therapists conduct eight different types of therapy for those suffering from mental disorders ranging from Obsessive Compulsive Disorder to anxiety to depression. The center treats a wide array of patients of all ages. Its focus is having therapists that are professional but also approachable.

“Having a place where they can go and feel comfortable and people care about them – it just seems like it really makes a difference,” said Lisa Miller, care coordinator for the center.

Miller said the center has seen a recent boom, adding 26 new clients in the past couple weeks, bringing its total to just shy of 600.

—

Two weeks following Grace’s surgery on her left hand and foot, her skin graft stopped taking. She was in a wheelchair, and now there was the unexplained bout of vomiting that had her doctors scratching their heads. They prescribed Zofran, an anti-nausea medication, and advised Patti to take Grace on a trip.

During their flight, a kind World War II veteran told Patti that he came out to “take a gander” at the USS Iowa, which the trio also planned to see while in the Golden State. They connected over their desire to see the battleship. His tongue clicked when he talked. His light blue crystal eyes sparkled like the ocean, and he smelled of wood and citrus. His patience while they were loading Grace into her wheelchair gave Patti a good feeling.

Grant, Grace and Patti landed in California. They resolved to hit all the hotspots. They went to the San Diego Zoo. They visited Lego Land and Safari Park.

“It was an eye-opening experience taking a person in a wheelchair to do those things,” Patti said.

When they arrived in Ventura, they visited the thriving downtown boutiques. They ate at a 1950s diner called “The Busy Bee.” The neon of the signs bounced off the black-and-white checkered floor. Each table had a jukebox at it, and the toilets required tokens to use. When Patti pushed Grace’s wheelchair through the door, the greeter took one look at the family – Grant with his Hard Rock Caf T-shirt, fedora and movie-star sunglasses – and sat them at one of the red vinyl booths. A sign on the wall read “No dancing on the tables.”

—

Inside the Grace C. Mae Advocate Center, 30 W. Main St., there are two rooms where therapists conduct therapy. Inside one, is a shelf of toys – Barbie dolls, shiny toy guns, Play-Doh, a Rubik’s Cube, a bottle of bubbles.

This year, the center is holding a charity ball at the Cedar Rapids Clarion. The ball focuses on PTSD. The theme is an analogy for the facades that Grace and Grant, who both suffer from PTSD, put up. It’s the mask they wear.

“It’s out of compassion that they wear the mask,” Patti said. “They don’t want others to feel bad because they feel bad.”

Children dealing with PTSD often benefit from play therapy. Play therapy allows these children to express themselves emotionally when they wouldn’t otherwise be able.

Kyle Votroubek, a licensed play therapist, said children between the ages of 3 and 12 benefit from play therapy because they lack the emotional skill set to express how they are feeling about a trauma they have suffered.

He said it’s important to let the child know that you accept them regardless of what they feel. He always tells them the same thing when they first come in.

“This is our special play room. You can play with any of the toys you want in lots of the ways you want, and there are no rules unless we have to make some as we go along, and we will talk about it together if we do,” he tells them.

Once the child is able to unpack their feelings, their turmoil melts, and they can begin to cope, he said.

—

When Grace, Grant and Patti returned home from California, they felt rejuvenated.

Patti brought home eight pounds of fudge. School was just about ready to start, and she had been wrestling with Grace’s school to provide her with an individualized education plan, which it finally granted in January.

Things had returned to normal. Grace’s health had improved.

Patti said her experience with having children with special needs has influenced her decision to encourage families to work with education professionals in developing a plan. She encourages teachers, counselors and others to participate in sessions to understand the process of caring for a special needs child.

When Grace turned 3, the in-home care she was receiving was discontinued. Because of her size, she didn’t yet qualify for a kidney transplant. Patti said the two years that followed were difficult. Having finished her PhD, that experience also shaped Patti’s professional decisions. She resolved to provide mental health services to people in rural communities that wouldn’t otherwise have access to them.

It’s important to never stop believing that the best is possible, Patti said. Patti has seen it. She sees it in the faces of those she works with. She sees in the patients she and her staff help. She sees it in Grace every day. Votroubek called the youngster an “old soul.” Miller said Grace captivates everyone who meets her with her personality and insight.

“This pretty much sums it up,” Patti said unfolding a T-Shirt for the masquerade ball.

In flourished gold script, it reads “Behind this mask is hope.”

A STAR is born

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.

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.

—

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.

—

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.

—

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.

—

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.

—

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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