Exceeding Expectations: A Child’s Life With Spina Bifida.

Exceeding Expectations: A Child’s Life With Spina Bifida

By Tabitha Waggoner

It was Kim Waggoner’s second pregnancy in seven years. There were no problems, remembered her husband, Tim Waggoner. They were just hoping to have a boy. She would have a cesarean section as she had with her first child, instead of waiting to go into labor.

The atmosphere was lively. The doctors and nurses were joking about the reelected president, Bill Clinton. A baby was being born—it was a happy time.

“They brought him out and just instantly people stopped talking,” Tim Waggoner remembered.

“There seems to be some kind of an abnormality on his back,” said Dr. Diana Granese.

“I saw it—and I thought, what is that?” Tim Waggoner remembered.

“It appears to be a spina bifida,” Granese said, as though in response to his thoughts.

Today, Gabriel, or “Gabe” as his friends call him, is 13 years old and stands a 5 feet 7 inches. He was born with spina bifida, a defect of the spinal cord. Spina bifida is one of the most common birth defects in children, with one or two cases per 1000 births. He has the most serious form of spina bifida, myelomeningocele. This is when an unfused portion of the spinal column lets the spinal cord stick out of an opening and the mingeal membranes covering the spinal cord create a bag protecting the nerves of the spine that would otherwise be exposed.

Immediately, the nurses cleaned the myelomeningocele and covered it. They then moved Gabriel to another room as quickly as possible. It was organized chaos—everyone was doing something, and everyone knew what they had to do.

Tim Waggoner went out to report the news to his mother, who was watching his daughter.

“Well, we have a boy,” he told his mother, Helen Waggoner.

“Is he healthy—is everything OK?” she asked.

“No, we have a problem,” he said.

“Well, what’s wrong?” his mother asked, concerned.

“The doctor said he has spina bifida,” he said. His 7-year-old daughter listening nearby began to cry.

“Is he going to die?” she sobbed.

Filled with compassion for his daughter and worry for his son, Tim Waggoner told her that no, Gabriel was not going to die. He was just going to have some problems in life.

Tim Waggoner met with the doctors and they decided that Gabriel would be taken to Vanderbilt University Children’s Hospital in Nashville. Vanderbilt already had a good reputation in his eyes and Nashville was close to Bowling Green.

The nurses had put Gabriel in a special room with two other babies. Gabriel lay in a warmer, small, naked, and on his stomach. A huge bandage was wrapped around his back over the myelomeningocele. Tim Waggoner, his daughter and his mother, Helen Waggoner, walked into the room to watch Gabriel sleep.

They couldn’t hold him because of the myelomeningocele. When Kim Waggoner woke up, all she could do was touch Gabriel inside the protective bubble they put him in before he was taken by ambulance to Vanderbilt  His wife couldn’t breastfeed their child or hold him—they could barely touch him, “not like normal parents get to do,” Tim Waggoner said.

The next seven days were a whirlwind for the Waggoner family. The morning after Gabriel was born, a family friend, Dale Laird, drove Tim Waggoner to Vanderbilt. They left around 5 a.m. and got to the hospital around 6. The nurses took Tim Waggoner and Dale Laird into a pediatric intensive care unit.

“There was this room, this huge room, full of babies—I mean packed, just lined up, just aisles and aisles of babies,” Tim Waggoner remembered. “And all of them were in critical care, there were issues with every one of them. I bet there were a hundred babies in there,” he said.

Gabriel was beside another baby that was breathing in an awful way—its chest was heaving up and down.

Gabriel had a repair done on his back—all the nerves were put where they belonged, safely inside his back. But, they weren’t finished. Within a day or two, they realized that he had hydrocephalus (swelling of the brain), a common problem in children with the myelomeningocele. Gabriel had a shunt inserted that would drain the liquid from his brain to keep it from swelling. Within his first few days of life, Gabriel had gone through two major surgeries with neurologist Dr. Noel Tulipan.

There were trips to and from the Medical Center at Bowling Green where Kim was, to Vanderbilt where Gabriel was. Kim Waggoner was released earlier than most women who have c-sections.

“I get the impression that she let me be just well enough to let me go to him,” she said. She wasn’t in the hospital more than three days. Because of her surgery, she could barely walk; her incision was filled with staples. Eventually, they made it to Nashville.

“When we came around the corner, Gabriel was crying,” Tim Waggoner said. “Gabriel was in there, by himself, and he was crying and nobody was with him—I thought, ‘this is just terrible that he’s in there crying, but what can we do, the nurses can’t stay there.’”

Finally, Gabriel got to breastfeed for the first time. They all got to hold him for the first time. But after the day had ended, they had no place to stay. They called a family friend who let them sleep at their house. The next day, the Waggoners had a room at the Ronald McDonald House.

The doctors warned Gabriel’s parents that he might not crawl, he might not sit up, he might not be able to walk and that he might have continence problems.

“I had a lot of fears,” Kim Waggoner said. She was afraid he would be in a wheelchair.

“It was a shock to believe that out of what seemed to be such a regular normal pregnancy, that this occurred,” she said. “We weren’t feeling bad about ourselves, we were worried about what it would be like for him.”

Only time would tell.

“I had to just trust in God and give that fear to him right away, otherwise it would’ve eaten me up easily. If he’s in a wheelchair, he’s in a wheelchair. It’s all about his soul, not his body.”

Even though Gabriel’s parents seem to have gone through more than regular parents, they have as many good memories as other parents.

“One day Gabriel pushed himself up on the bed, like he was about to crawl,” Kim Waggoner said. His sister was watching over him while she did housework.

“His sister said something like, ‘Mom! Gabriel’s sitting up!’ And we were so happy and overjoyed and loud and it was a happy moment, but the poor little thing, we scared him half to death and he cried,” she recalled.

“I remember when he took his first step or two and didn’t fall; it was a big celebration when he did,” Tim Waggoner said. “Called Grandma and Grandpa, called everybody. It was exciting.”

Even though he was swaddled in a blue snowsuit, prepared to go out into snowy night, he wasn’t hindered. As his family shouted and cheered him on, he took a step all by himself in the apartment hallway—then another, then another. He giggled, his almost-black eyes lighting up as he moved faster. Gabriel was about 15 months old when he took his first steps alone—only a few months later than the average child.

Although Gabriel could walk, he still had continence problems. Dr. Mark Adams and his assistant Lisa Trusler,  told Tim Waggoner the day they met him that he and Kim would have to learn to catheterize Gabriel. Catheterizing would help Gabriel to completely empty his bladder and prevent infections.

“I was like, what, what are you talking about? You’re kidding,” Tim Waggoner remembered.  After Gabriel was born, Adams and Trusler told Tim Waggoner and his wife that to leave Vanderbilt, they would have to catheterize him. And they did, but not without difficulty. The first year of Gabriel’s life was hard for his parents. They had to get up in the middle of the night to catheterize their child. They would struggle for a long time in those first few months to get the catheter in.

“We would be sitting there and be like, ‘Lord please let this catheter go in. And it would slip in,” Tim Waggoner said.

But they knew that Gabriel would still have problems with his balance. Gabriel had (unrelated to spina bifida) a hypospadias and circumcision surgery. Then, his pediatrician, Dr. Debra Sowell, noticed his head seemed abnormally large for a toddler. She referred him back to Vanderbilt—and after tests, it became apparent that his shunt was malfunctioning. He had to have an emergency shunt revision over the summer before he turned one. Now that he was learning how to walk, there would be additional complications. Gabriel was not yet two and had now had already four surgeries.

“From the time he was born…when they’ve seen him through his birth and difficulties with spina bifida and his struggles, seems like the more surgeries he had, and the more you could visibly see where he had to wear a cast or a brace, the more people started forming a view about him,” Kim Waggoner said. “People admire him and they want him to succeed in everything. They see that he doesn’t let anything hold him back because of his condition, they wanted to see him succeed, whether it was at Little League or at shooting free throws.”

Over the next few years, Gabriel had surgery to repair a tethered spinal cord and a surgery to correct his left foot and ankle. But he still could not control his bowel and bladder movements.

“He was diapered every day for five whole years,” Kim Waggoner said. “That’s a long time for a little one.”

One day the doctors at Vanderbilt suggested that the Waggoners consider a new procedure for Gabriel—the MACE. MACE is an acronym for Mitrofanoff for Antegrade Colonic (or Continence) Enema. It’s when the appendix is recycled and implanted into the bladder or bowel to create a one-way valve so that a person can have some control over their continence problems.

This would become one of the biggest landmarks of Gabriel’s life. Gabriel remembered that it hurt his feelings when his friends would hold their noses and say he had made the room stink. When he, his mom and his sister went to play at the parks, he almost always had accidents, his mother said. Gabriel couldn’t even take a bath without wearing a diaper. Any kind of activity could cause him to have a bowel movement.

Everything changed for Gabriel and his family after Dr. John Adams did the MACE procedure. But the surgery wasn’t easy. Because Adams created two openings, one for bladder and one for bowel, where catheters could be inserted, the surgery took a little longer than expected.

Usually, the MACE alone takes about six or seven hours. This one took nine hours. It was an expensive surgery, but money was not a big problem because the Waggoners have always had insurance that pays for their children, along with Medicaid and Humana—saving them at least a hundred thousand dollars of debt. The family called the MACE the “underwear surgery” because once he was healed, he would begin to wear underwear. They bought him superhero underwear—Superman, Batman, Spiderman and so on—and so did his friends at Lost River Church of Christ.

Every day for about one hour, Gabriel must “do the MACE” by flushing water into his system by syringe and catheter. Doing so allows his colon to be completely flushed out. He catherizes every 3 to 4 hours, normally through his belly button, in order to empty himself out to keep from getting bladder or kidney infections, which are frequent in spina bifida children.

“The good thing about spina bifida is, though, that you get stuff,” the afro-headed boy explains. People gave him money, his class at church created cards for him, people brought him books, art utensils, food and most important, their love.

“I do remember him being wheeled into his room with all of those tubes, a bag of fluids, with tubes draining into the bag, he’s hooked up to the catheter—and that’s a big tube,” his mother said. “He had just turned five a few months earlier. And he just looked so little in that big bed with all those tubes. So little, so weak, so sad,” she said.

“And I just feel so sad to think what he was going through—just so he can have underwear.” He was the first person in Kentucky to receive the MACE procedure, as far as they know, she said.

“I believe that the surgeries, especially the MACE one, has changed his life, and has made every day coping and regular living accessible to him.” But that doesn’t mean he has it easy, she said.

“We’ve always tried to do things for Gabriel—anything he wanted to do, if he could,” his father said.

Gabriel remembers the recovery from the MACE procedure vividly.

“The reason that the MACE surgery was painful was because of the four tubes.

The tube that was in the nose had an uncomfortable feeling for the throat,” he said. “The tube in the belly button, when they took it out, it felt numb or pressured, I think is the word,” he thought about it for a moment and smiled awkwardly. “The one near the groin, I suppose you could say, felt weird. And I couldn’t be on my side because it would fall out or be unhooked by the IV cord thingy—the tube in the MACE hole was like the same as the one in the belly button it felt the same.”

Feeling different from other children bothers Gabriel sometimes.

“I used to get upset about doing the MACE, but I have fun with my life anyway—the reason I got upset about doing the MACE is because my friends haven’t done it before, I suppose,” he said. Over the past few months, Gabriel has struggled with an open ulcer resulting from the brace he wears on his left leg, He had to wear a cast, keeping him off the court for most of the season, but he still attended games and practices and took stats for the coaches.

After struggling with this open ulcer off and on for a few months, Dr. Gregory Mencio, Gabe’s orthopedist and surgeon, told Kim Waggoner to keep Gabriel out of the brace. It seemed to be doing more harm than good—Gabriel is more active than most children who wear a brace. He has checkups with Adams, Trusler, Dr. John C. Pope, (Trusler’s husband) and Mencio every year, and often more frequently. Sometimes Kim Waggoner and her son visit Vandy several times in a week.

Gabriel says he’s never jealous of other children. His friends don’t even feel like he’s that different from them. William Kelley, Gabriel’s best friend and teammate on the Barren River Home School Association middle school basketball team, the Trailblazers, says Gabriel never complains.

“He’s pretty much the same [as us],” said William, 13. He also attends Lost River Church of Christ with Gabriel and has known him for eight years.

Another friend, 13-year-old Jonathan Vinson, a student at Henry Moss Middle School, says he has known Gabe a long time.

“He’s funny—he’s silent sometimes,” Jonathan said. They like to play kickball, backyard football and baseball together.

Quentin Arnold, 13 and also homeschooled, has known Gabriel since they were both babies.

“He’s pretty normal,” William said. “Well, I don’t know how normal,” quipped Quentin. “He acts, normal, let’s just say that.” They all laughed.

“Whenever I walk by some kids, little kids, maybe ten or eleven, or my age, they look at my legs or my feet because I walk bended.” Gabe says he is used to it all now.

When he began to get taller, some of the muscles caused him to walk with a slight crouch in addition to his unusual gait. In the near future, he will probably have knee extension surgeries to correct this problem.

“I’m fine. I like to play basketball, go to camps, be with friends and collect coins,” Gabriel said.

When he played Little League, he would often be put in the outfield and when he plays basketball, he doesn’t get as much playing time as he wants.

“The reason I’m in the outfield is because I have spina bifida,” Gabriel said. “I wish I could play in the infield some. I get to pitch some.”

It’s no question that spina bifida hinders him in this sense, although it doesn’t hold him back from trying.

“I can’t run as fast, although I’m pretty close,” he says.

But he touches people wherever he goes, and it shows. He won the Trailblazers’ basketball team’s Most Christlike Player Award in 2008 and Kamp Kennesee’s Kamper of the Year in 2008.

Gabriel is just like any other child, yet not just like any other child. His worst memories are not any of his eleven surgeries—they are memories of friends dying and his cat, Belle, being run over by a car. His best memories are also similar to other children—visiting Disney World with his family, going to camp, the Ty Rogers shot during the WKU-Drake game in the 2008 NCAA basketball tournament and so on.

“He just wants to be like other kids,” Kim Waggoner said. “I’ve never seen him suggest that he should have any special treatment. And I’ve never wanted him to have that; of course he has to have cautious treatment, but not special.”

“Sometimes I wonder ‘why did God let Gabriel have spina bifida?’”

But, she asks, if it had to be anyone, look at how Gabriel has handled his condition—why not Gabriel?

She says the future is rich for Gabriel, but he is uncertain.

“I don’t really know what I want to do, I haven’t really thought about it,” he said.  But right now, he says he is content. But this week, Gabriel will mow the yard, he will practice the piano, visit family and play with his friends—just like his family and doctors hoped he would.

Author’s note:

I was that seven-year-old girl who cried because she thought her new brother would die. I have watched Gabriel practically every day of his life and have learned that everything must be taken step by step, with patience. I know Gabriel better than anyone except our parents—he is a patient person who people love immediately.