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The bouncy, playful 21-month-old girl seemingly wants to hug everyone she meets.

But she isn’t starved for affection. Far from it. Nearly everyone these days, it seems, wants to hold and comfort the youngest daughter of Navy Aviation Ordnanceman 1st Class (AW) Thom Wetmore and his wife, Tami.

Juliana will need a lot of hugs as she grows up and realizes that not everyone will show her the same kind of love and care that many in her community and around the world have shown since her story was reported on a Jacksonville, Fla., TV station, posted on its Web site and rocketed across the Internet.

Juliana, who is otherwise completely normal and healthy, was born with a relatively rare facial disfigurement known as Treacher Collins syndrome.

She was, in essence, born without a face.

Juliana has one of the worst cases experts say they have ever seen — she’s already undergone 14 surgeries. At birth, her face was essentially caved in — extruding, drooping eyes; a pinhole of a nose; ill-defined ears; and an oral cavity that defied description. She was missing her upper cheekbones, eye sockets, nose, ear canals and most of her outer ears, upper lip and the roof of her mouth.

Her deformity, however, is but a mask that hides a child of incredible warmth, intelligence and energy. She’s a fighter, having conquered a string of other maladies, any one of which could easily have ended her life. But she survives.

This is Juliana’s story — a testament not only to a tough little kid, but to one Navy family’s hope, strength, love and determination.

The full extent revealed

Prenatal ultrasound tests warned of complications. “We knew there was a problem,” Thom said.

But the ultrasounds didn’t show the extent of Juliana’s condition. By March 2003, the Navy couple had prepared themselves for a healthy child but one born with, perhaps, a cleft lip or palate, milder deformities of the lips, jaw or gum that occur in one in 500 to 2,000 births, depending on the parents’ race.

Although Thom is stationed at Jacksonville Naval Air Station — he’s an instructor/flight engineer at Patrol Squadron 30, the Navy’s P-3 fleet replacement squadron — the base hospital lacks a neonatal intensive care unit, or NICU. So the birth took place at Shands Jacksonville Medical Center, but was paid for by the Navy through the Tricare system.

Delivery day came March 5. It was anything but easy.

After an all-natural birth, Juliana was whisked into an infant operating room, when doctors saw the extent of her condition. At the same time, Tami began bleeding uncontrollably.

She didn’t get a clear look at their daughter.

But Thom did.

“Oh, my God,” Thom recalled thinking. “All there is is a big gaping mouth. I was wondering how she was going to breathe or live or see.”

The staffers asked Thom if he wanted Tami to see Juliana. Thom didn’t want to further traumatize his wife but at this point, just 10 minutes after the birth, it was unclear if Tami would even survive Juliana’s birth. Doctors worked furiously to stop her bleeding, eventually stabilizing her. As they did, Thom showed her a digital photo he’d taken of their new baby girl. He hoped the picture would help lessen the shock. “What is this?” Tami recalled thinking. “What happened to my baby? I know that sounds ... horrible for a mother to say. But knowing something was wrong, but not knowing what to expect ... it was just kind of ... confusion, maybe?”

Moments later, Juliana was wheeled by the delivery room en route to the NICU, and Tami caught her first real glimpse of her child.

“It was harder — not for me to deal with it — but to know what she was having to deal with,” said Tami, who has since recovered.

The beginnings of normalness

One in every 33 babies is born with a birth defect — about 3 percent of all babies born in the United States, according to the National Center on Birth Defects and Developmental Disabilities. One in 100 to 200 babies is born with a heart defect, the most common type; one in 800 is born with Down syndrome.

Treacher Collins syndrome occurs in one of every 10,000 births.

Juliana’s traumatic birth was only the beginning of her problems. Since then, she’s overcome three bouts with pneumonia, two of respiratory syncytial virus, or RSV, two bacterial infections stemming from intracranial surgeries, two surgeries for severe acid reflux disease, a seizure and episodes of influenza and meningitis. Several of these were life- threatening.

For now, however, she’s relatively healthy and happy — and thanks to initial reconstructive procedures, has the very rough beginnings of a normal face.

And she is precious.

She walks, though she still needs help. She can’t speak, but expresses herself vocally by changing the pace of her breathing. She claps her hands with glee and climbs up on a lap with ease. She likes to draw and loves to watch “Baby Einstein” educational videos while seated in her fuzzy white rocking chair. She’s learning her first words in sign language. And — while no one knows where she picked it up or what it means — Juliana occasionally pumps her right fist triumphantly, looking like an excited football fan exclaiming, “Yes!”

And she loves to look at herself in the mirror. She points. “That’s me!” she seems to say.

But the syndrome left Juliana unable to easily swallow or breathe. As a result, caregivers draw accumulated saliva and mucus out of her throat through a tracheotomy tube inserted in her windpipe and attached to a portable pump in an ever-present gray carrying bag. She must be fed an organic food mixture through a tube inserted through her abdomen and into her stomach. She’s watched all night by in-home nurses, paid for by the Navy.

Lt. Cmdr. Scott Akins, Juliana’s Navy pediatrician, said that moments after her birth it was clear the family had to find expert care for her.

“We wanted to find a national expert,” he said. Their queries led them to Anthony Wolfe, a renowned plastic and craniofacial surgeon at Miami Children’s Hospital. It turned out to be a wise choice. Within days, Juliana was transferred to Miami.

“Even for the very best people in the world, this is a daunting case,” Wolfe told Army Times. “It takes a very extensive craniofacial team. ... It’s headed by a geneticist, and we have neurosurgeons and orthodontists and [eye, ear, nose and throat specialists] and ophthalmologists, and they all enter into the care of somebody like Juliana.”

Wolfe’s first surgery involved opening Juliana’s closed left eyelid; left alone for more than a few days, the brain would have permanently “shut down” the eye, he said.

In all, Juliana has had 14 surgeries ranging from that relatively minor procedure to intracranial work and the implantation of a device in her facial bone. The device forced what bone she had in her cheeks to grow outward so doctors could then build additional bone structure through grafting, for a more normal facial structure.

“So that’s how her cheeks have as much structure as they do now,” Akins said. “There’s been kind of a dramatic shift in the anatomy of her face, which is pretty amazing.”

Problems for work life

While the surgical outcomes have been positive, Juliana’s string of surgeries and serious complications were emotionally draining for the family. This was particularly critical for Thom, the breadwinner and a 16-year Navy veteran, who felt it was time to rotate to a deployable Jacksonville-based squadron so he could remain competitive before a chief petty officer promotion board.

“Balancing the career and the family — the two go hand in hand,” he said. “I love what I do. And making chief is critical to staying in past 20 years and getting the benefits, because a lot of the [active duty] benefits, as a retiree, go away.”

But the situation at home was wearing on Thom — and his squadron.

“There were times we had to cut him some [permissive temporary duty] orders, ’cause there was no way he could take that much leave,” said Chief Aviation Electronics Technician (AW/NAC) Jason Mooney, the outgoing flight engineer division chief for Patrol Squadron 30. “Other times, because his mind wasn’t in the right place ... he wasn’t really prepared to operate the aircraft.”

As a result, Thom was taken off the flight schedule several times during Juliana’s first year. His squadron mates repeatedly stepped up to help, Mooney said. Regardless, his hopes of transferring to a deployable squadron were put on hold.

“Hey, sometimes, your family has to come first,” Mooney said he told Thom.

For now, Juliana appears to have stabilized. Depending on the outcome of a January visit to Wolfe, Thom — whom Mooney described as an “outstanding instructor” and “one of our best mentors for students” — is leaning toward transferring to a deployable local squadron in the summer, he said.

But when one problem is solved, there are more lying in wait.

While Juliana’s care was, and remains, paid for by the Navy, Thom and Tami had to figure out how to get to and from Miami for frequent and sometimes lengthy visits, something the Navy does not cover. “You can imagine the logistics of that,” Akins, the Navy pediatrician, said.

Initially, that challenge was taken up by Oklahoma-based Angel Flight Inc., a national group of pilots who provide or arrange for free air transport for “legitimate, charitable, medically related needs.” While the Wetmores gratefully accepted the help, the length of Juliana’s stays in Miami made coordination difficult.

In stepped Woody. And once again, the Navy.

Gil “Woody” Wood is a retired senior chief and civilian instructor at VP-30. He knew the family and eventually sent the e-mail to a local TV reporter that launched Juliana’s story around the world. Wood heard Thom talking about the problems with the Angel Flights. So he and retired chief Rick Sorrell, who together own two-thirds of a Piper Cherokee 6 airplane, began to fly Juliana to and from Miami for free — including fuel costs.

“That’s how Juliana’s Air Force was born,” Wood said with a chuckle.

Both men downplay their roles.

“Life’s just difficult,” said Wood, who remains grateful for the help he got when his daughter was diagnosed with leukemia at age 2½. “When all you’re focused on is your own self, it becomes a miserable existence. If we get the chance to share with someone else, that’s what makes life worthwhile.”

“It’s an easy thing to do for them,” Sorrell said.

Lots of other folks have pitched in too, from members of Thom and Tami’s church to their Orange Park neighbors. When Tami and Juliana first came home, they didn’t have to prepare dinner for two weeks; neighbor Lisa Felegy had persuaded other residents to make the Wetmores a nightly meal.

Sisterly ways

More recently, life has settled down somewhat — that is, until Juliana’s story hit the airwaves. The response has thrown the household into a tizzy. Watching it all is big sister Kendra. A bright, well-mannered and pretty little girl, she is openly affectionate toward Juliana — though she’s also not above giving Juliana a soft, sisterly whack on the head with a couch pillow. Still, her parents know it’s been tough on Kendra.

“She’s getting stressed out,” Tami said. “The phone’s ringing all the time; we’re constantly opening the mail.” Is she overwhelmed? A bit jealous? “I think it’s both,” Tami said.

Thom and Tami, on the other hand, seem to take the attention and the daily routine of caring for Juliana in stride. Other than drawing fluid out of her throat and feeding her through her stomach portal, Tami said, “It’s not that different than dealing with any other child. And she’s so intelligent. When she’s healthy, she’s just like dealing with any other 2-year-old.” Tami says she sees it as an “opportunity,” not a chore.

In addition, Thom and Tami say, they draw strength and solace from faith in God. “It’s definitely a source of comfort and strength for me,” Tami said. She finds abhorrent the concept of “mercy killing” of terminally ill children, saying it runs counter to her faith. “Who’s to decide who’s good enough, or who’s perfect enough, for this world?” she asked. “That’s not for you, or for me, or for anybody else to decide.”

Despite Juliana’s obvious problems, she is “right on track, developmentally, for the most part,” Akins said. She likes being with people, and laughs and plays. “And she’s dying for functional language,” he said.

In the meantime, he said, Thom, Tami, Kendra and others in her life also need to learn sign language, right along with Juliana.

Wolfe, the Miami surgeon, chooses his words carefully when asked for a prognosis on Juliana, “one of the more severe cases” he’s seen. “If I’m around in 15 years, I’ll still be working on Juliana, I’m sure,” he said.

She could require as many as 30 more surgeries.

The best possible outlook, he said, “is that she would have a face with all the parts in the right places, and maybe some scars, but be presentable in public so people wouldn’t stare. That’s what we aim for.” He also believes she’ll eventually be able to speak after additional surgeries and the installation of hearing aids.

“The best thing she has going for her is them,” Wolfe said, referring to Thom and Tami. “What fantastic parents they are.”

Help from far and wide

Donors from around the country and overseas have cumulatively sent the family thousands of dollars, and the family is establishing a trust fund for Juliana with that money. But her future medical needs could be tremendously expensive.

While Thom is on active duty, the Navy pays all medical expenses, including the specialized surgeries and items such as the $800 monthly expense for medication to prevent RSV. It also pays for a home nurse to stay up all night and keep an eye on Juliana and to draw out fluid accumulated in her throat.

But the Wetmores fear the costs they might incur if Thom leaves the Navy in four years. Even with retirement benefits, they would face as much as $4,000 a year in expenses, not including travel.

Despite the potential need, Thom said, sharing Juliana’s story isn’t about raising money. “I wanted people to see her in a positive light, to see how special she is, and to educate people,” he said.

“She’s not getting sensationalized,” Thom added. “We don’t want people feeling sorry for her or sorry for us.”

At the same time, the family is grateful for the donations. “We’re not looking any gift horse in the mouth,” he said.

One outpouring of support took place Dec. 16 at Hendricks Day School in Jacksonville, where 350 students had raised $3,507 for Juliana in three days. One family gave $1,040, but most of the money came in donations of $2 to $5. A couple of children asked their parents to donate what would have been spent on their Christmas presents.

Thom, dressed in his winter blue Navy uniform, praised the leadership demonstrated by the student class officers who presented the check. He likened them to his Navy shipmates.

“There’s a lot of honor in that,” he said. A moment later, he told the students, “You all really demonstrate the teamwork that we use every day.”

After Thom introduced Juliana to the kids, many crowded around for a chance to hold her.

“I was kind of surprised at how friendly she was,” said Andrew Wit, the eighth-grade treasurer, after spending a few minutes with Juliana. “She’s really nice.” He admitted her appearance was initially “surprising” but added, “You kind of grow on it.”

Andrew also took note of her bubbly, hand-clapping personality. “She’s really funny,” he said.

The school used Juliana’s visit to help teach its students.

“We ask them to think, ‘How would you behave if you saw somebody like this on the street?’.” said Sally Lott, head of school at Hendricks Day School, which is affiliated with the Methodist Church.

But people, particularly children, can be cruel, even unintentionally. One curious young boy with a separate group of students who entered the library after the presentation spotted Juliana and said loudly, “Eww, what’s that?” A teacher gently but firmly guided him away, softly telling him that appearances aren’t everything.

Attitudes, however, can be changed. As Tami and Juliana walked past the playground at Kendra’s preschool a month ago, an older girl shouted, “That baby’s disgusting.” School officials talked about the incident to students and since then, Juliana’s story has been all over the news. After a more recent visit to the school, Tami said that as she and Juliana were leaving, she heard somebody yell at them for attention. It was the same girl.

“She was waving at us,” Tami said with a smile. “So we made a convert.”