Skip to main content

The lives they’ll live

Gabe

Written by Diana Mazzella
Photographed by Raymond Thompson Jr

  • Share this article on Facebook
  • Share this article on Twitter
  • Share this article on Linkedin
  • Share this article on Google plus
  • Share this article via Email

Gage Beavers is at the plate. His Eat’n Park-sponsored team is ahead of the Shingle Shine Roof Cleaning players as dusk leads to night. Gage has two strikes and three balls. The next pitch is a ball. Gage walks to first base: Left foot. Right running blade.

Because of a congenital abnormality, Gage wears a prosthetic. He may not be the fastest player, but baseball is his driving force.

It wasn’t the prosthetic that determined whether Gage would be here at this game on this night before the Morgantown Pony Baseball League headed into the playoffs.

It was a day when he was 3 years old at WVU Medicine Children’s with bacterial meningitis. The nurses told his parents, Kelli and Matt, to take pictures of their toddler. The reason hanging in the air was that it could be the last proof they would have of Gage. His neurosurgeon, Dr. Collins, treated him. And those pictures are the proof to Gage that he spent 46 days at the hospital when he doesn’t remember it at all.

“He would not be alive and playing baseball if not for them,” Kelli said.

Everyone sees the leg. They don’t see the scar tissue on his spine that marks the line between living and not. Being a 14-year-old with a room that is a top-to-bottom tribute to the Pittsburgh Pirates. Playing basketball. Being unenthusiastic about the transition to high school this fall. Charging ahead of his excitable, graying dachshund Jax.

Children across West Virginia are here because a few doctors, nurses and administrators expanded specialized pediatric care 50 years ago in West Virginia, and today their successors are creating — with the help of the $60 million Grow Children campaign — the first free-standing children’s hospital in the state at WVU Medicine Children’s, set to open in June 2021.

They’re doing this because there are many more Gages. And Ivys. And Zilers and Brantlys. And the tiniest: The Tylers.

 Tyler Yost syrveys the Fairmont Field Club golf course
Tyler Yost, 12, surveys the Fairmont Field Club Golf Course where his mom, Sarah, teaches him golf. He was born three months too early, weighing 1 pound, 7 ounces.

The First Premie

Bill Neal, MD ’66, was finishing his training in pediatrics in Minnesota in 1974 when he was offered a job back home at West Virginia University School of Medicine.

He declined at first because he needed to work at a hospital with a newborn intensive care unit to treat newborns with congenital heart disease. University Hospital’s first chair of Pediatrics, Dr. Gene Klingberg, said if that was important he would encourage Neal to develop one.

“I was young and naïve enough to think I could probably do that,” Neal said.

And he and a lot of others at the hospital created one. Neonatology was a new subspecialty across the United States, and while there were neonatal units in the Twin Cities, it wasn’t unusual that most regional hospitals wouldn’t have one, Neal said.

There was a prevailing attitude at the time that “if God wanted a newborn to survive, it would,” but intensive care was not considered an option when it came to premature infants, he said. Because of his training, Neal knew there was a better way.

The task was monumental. At University Hospital there was only an adult ICU. Nurses had to be taught how to care for infants on a ventilator, how to take their blood pressure, how to apply techniques of intensive care to newborns. Because this was before modern EMS services existed, there was no way for medical staff to transport sick babies to the hospital.

The staff cobbled together enough money to purchase radiant warmers and support equipment for a two-bed infant enclave in the ICU. With the arrival of a special transport incubator, privately owned Morgantown Ambulance Service volunteered to transport infants to the hospital, even though payment was not covered by insurance at the time.

In February 1975, a premature baby was born in central West Virginia with respiratory distress syndrome, the same disease that took the life of Patrick Bouvier Kennedy, President John F. Kennedy’s son, a few days after his birth. With this condition, the lungs cannot expand to allow oxygen exchange. The West Virginia newborn, a grandson of a state senator, was the first infant to be medically transported to University Hospital using the new system, and his life was saved.

The staff proved what could be done to bring babies back from the brink in rural areas with a borrowed Cadillac ambulance, a little bit of equipment and no real NICU. Neal and chief resident Martha Mullett, who went on to become a neonatologist, alternated nights on transport call for several years until nurse practitioners could be trained to take over this task.

Over time, the NICU became its own separate facility with dedicated nursing and respiratory therapy staff. The new WVU Medicine J.W. Ruby Memorial Hospital was designed to incorporate the model of a ‘children’s hospital within a hospital,’ the only such facility in West Virginia affiliated with the national Children’s Miracle Network. Fundraising activities through the network generated financial support to fill the growing need for new subspecialists in pediatrics.

This all made it possible for what took place on Aug. 2, 2007, and the days after.

Sarah Yost was six months into her pregnancy, and everything was going well. Then she couldn’t feel her baby move. What she couldn’t see was that Tyler had stopped growing, blood from the umbilical cord was reversing directions back to Sarah, and Tyler was taking on more fluid. To save his life, Tyler was delivered that day, weighing 1 pound, 7 ounces.

Sarah calls that a generous weight since he was full of fluid with a condition called hydrops. She and her husband, Aaron, watched Tyler’s daily and weekly milestones with hope at the hospital. But within a few weeks, Tyler was diagnosed with brain bleeds. He spent his first 100 days in the hospital and at 15 months had brain surgery, the first of several surgeries he would need.

“It does not yet seem real that we are all home,” Sarah wrote on that 100th day in their online diary for Tyler. “I looked at the clock a bit ago and thought … time to call the hospital to check on Tyler… then it sank in that he is here in our arms and we can finally move on past that chapter in his life.”

Today, Tyler is a 12-year-old who trails behind his 4-yearold brother, Landon, with exasperated affection. He plays the opening chords of the “Star Wars” theme on his keyboard and shows off his golf skills at the Fairmont Field Club golf course Sarah is a golf pro and has taught Tyler the sport since he was little. From the brain bleed, similar to an adult stroke, he has some cerebral palsy, and playing golf has helped him coordinate the movements of both sides of his body. He likes driving and putting best.

“Putting you just have to measure the green, see if it’s going to curve or not. I do really good with that. I get a two or three putt every time,” Tyler said.

When asked about his ideal day, he says, “I would just stay home on my Xbox, I guess.” 

His mom, who is hoping for a different answer, says: “Awesome. What would be your second ideal day?”

“Playing with friends,” he says. 

Little girl looking in the mirror
Ivy Martin, 7, dresses up in her bedroom, which is painted her favorite color purple.

The Doctor You Need

When Natalie Jefferis was 2 years old, she would fall over. And she walked less. Her parents took her to University

Hospital where she was diagnosed with leukemia. Through most of her childhood, she went from her home in Fairmont to Morgantown where she would receive chemo and go to checkups. When she relapsed at 8, her doctor was A. Kim Ritchey, who listened to her intently and would ask her to tell him when her skin was numbed and she could be injected with a needle for chemo.

Ritchey was the difference between Jefferis traveling a half hour and having more time at school and with her family, and having to travel most of the day to get treatment. At times, she said, Ritchey was one of only two pediatric cancer specialists in the state.

Amy Bush Marone, chief operating officer of WVU Medicine Children’s, explained the widespread changes that will come with a freestanding children’s hospital to contribute to the goal of helping children stay healthy and also heal more quickly.

Pediatric and neonatal intensive care units, a birthing center, emergency department, dedicated operating rooms, cardiac catheterization, endoscopy, radiology, subspecialty clinics and more will be available under one roof. The hospital has everything from its own cafeteria and chapel to helicopter pad.

“We’re trying to create the ultimate experience for the patients and the families,” she said. “No one wants to come to the hospital. But if you do, we want it to be integrated, collaborative and a healing environment.”

Brantly Poling, 7, uses his handcycle

Brantly Poling, 7, uses his handcycle at the Parkersburg, W.Va., waterfront with his sister, Brylee, 3. Brantly was born with spina bifida, paralysis and fluid on his brain and has had about 30 surgeries. Last summer, he spent eight weeks in the pediatric ICU at WVU Medicine Children’s, where he got into a nerf battle with the receptionist and is very proud of his direct hit. Those weeks were difficult, but he tells his mother, “After I got discharged, we made up our own summer, didn’t we, mom?”

Chair of Pediatrics Dr. Charles Mullett, MD ’93, said one of the marked changes with the new children’s hospital will be the depth and breadth of specialists. In the last three years since the new 150- bed, nine-story wing was announced, the number of specialists has increased about 50 percent to more than 70 doctors. There are also specialists in other fields at WVU Medicine who are available for child and mother care. Several specialties that were not offered before are now filled, including pediatric urology, dermatology and rheumatology.

“One of the big growth specialties for us is neurosurgery in general such as brain tumors and hydrocephalus — water on the brain — but the new thing that we’re getting into in a big way is pediatric epilepsy surgery for kids who have seizures,” Mullett said.

Today, the NICU at WVU Medicine Children’s operates at 108 percent capacity. Other inpatient units, including the maternal and infant care center, acute care and pediatric intensive care, operate at 84 percent capacity or above. The hospital wing is growing from the existing 119 beds, but it’s where the new beds are and who will be available to treat the children in them that matters most.

Mullett says that when he came back to work at WVU, he was following the family calling. That early neonatologist, Martha Mullett, is his mother, and that
retired pediatrics chair, Bill Neal, is his stepfather. WVU Medicine Children’s is a long way from those days when

his parents waited on call for a baby out in the world who might need them.

“If you think about the history of pediatric care in the state and the country and the world,” Mullett said, “it has come so far in my lifetime.” 

Now Jefferis, an attorney, is a member of the WVU Medicine Children’s Leadership Council, working to raise funds for the new hospital wing and more specialists.

“The children’s hospital is really about providing families with hope for a future. And whether it’s basic pediatric services or more complicated care like pediatric cardiology and oncology, those basic needs have to be met to build the next generation,” Jefferis said.

“I wouldn’t have the opportunities to do the things that I’m doing in life but for the services that were provided at WVU in my childhood.”

Ziler Hawkins colors
Ziler Hawkins, 8, colors at the South Charleston, W,Va library.


Being A Kid

Across West Virginia, there are children at play. Brantly Poling, 7, in Vienna, has pulled out his nerf guns and takes aim at Dr. Pepper cans perched on upside-down buckets.

Ivy Martin, 7, in Morgantown, fishes for bluegill at a pond, impatiently waiting for the fish to nip on the work at the end of her fishing pole while telling her mom that patience is the key to successful fishing.

Everywhere Ziler Hawkins, 8, goes in South Charleston, she has made friends. Friends with the clerk at the Speedway where she gets iced tea, at the library where she constantly goes to check out books, at the Heart and Hand thrift store where she helps the cashier hand the bag to patrons.

For six months of Ziler’s life, no one thought anything was wrong. But she would scream when placed on her belly. Her mom, Kim, didn’t know that the feeling was like torture. Ziler had cysts on her brain and was transported from Charleston Area Medical Center two and a half hours north to WVU Medicine Children’s. She’s had 15 surgeries, 11 of them in a one-year period. She still goes in for checkups and adjustments to her shunt.

Each of these children have dreams.

Gage wants to be a police officer or work in criminal justice.

Tyler and Ivy also want to be police officers. Brantly has an elaborate plan to be a police officer, ambulance driver and tow truck driver where he will split his time among the three jobs.

Ziler wants to be a child-life assistant, which, as she has learned, is the person at the hospital who brings you a coloring sheet every day.

On her bed, among a mountain of plush toys given to her by family and friends at the hospital, Ziler reads from a book her parents made detailing her first 20 weeks.

“This is falling apart,” Ziler says of the book. Kim says, “Because you’ve read it so many times.” Ziler gets to the end, and reads: “Ziler’s adventures have just begun. Ahead is a lifetime full of fun. Who will she turn out to be?" “We’ll have to wait and see.”

To support WVU Medicine Children’s, contact Cindy Liberatore at cynthia.liberatore@wvumedicine.org or 304-598-4346.