Smith family finds comfort, hope at Le Bonheur

Published On 04/25/2017

Since they started dating in high school, it seemed that the course of Webb and Courtney Smith’s life together was almost preordained.

High-school sweethearts, they chose similar career paths in medicine. Courtney became a mother-baby nurse. Webb, who played baseball in college, channeled his love of sport into a degree in exercise and sports science, eventually earning a master’s degree from the University of Memphis. They graduated within a few days of each other and married a week later.

Lives aligned, entwined

Soon, it was time to start a family. About 17 weeks into her pregnancy, Courtney and a co-worker, who was an ultrasonographer, decided to take a little peek at the baby with an impromptu ultrasound on a Friday afternoon.

“They saw on the ultrasound that things were not normal with the baby,” Webb said. “They got the high-risk perinatologist, who came in and told her there were clear signs on the ultrasound that something wasn’t right.”

That “something” was a series of small signs that the brain and spine were not forming normally. The diagnosis was spina bifida, a rare neural tube defect in which there is an incomplete closing of the vertebra and membranes around the spinal cord. The defect affects the ability to walk and control of the bladder and bowels, among other problems.

The diagnosis was a blow. The Smiths reverted to their medical training, focusing on educating themselves about spina bifida and its effects.

“Courtney and I handled this much differently,” says Webb. “Even at that time, my brain was the researcher. My level of comfort was to do as much research as I could because then I could make informed decisions. Courtney was really more concerned about outcomes.”

Courtney says, “I was in shock, scared and sad. But, I was mostly scared of the unknown. We would not find out until later the severity and location of his spinal lesion, and we had no idea what to expect as first time parents.”

carter1

They read everything they could get their hands on, researching spina bifida, as well as the physicians and surgeons who specialized in treating it. That’s where they learned that one of the country’s top pediatric neurosurgeons was right in Memphis, at Le Bonheur Children’s Hospital.

“When we found out about Carter’s diagnosis, we researched and were willing to travel to wherever the best care would be for him,” says Courtney. “We were so fortunate to hear from many doctors and specialists that we were where we needed to be. Dr. Boop is Carter’s neurosurgeon and one of the best in the world, and we are lucky enough to live only 30 minutes down the road.”

Frederick Boop, MD, is co-director of the Neuroscience Institute at Le Bonheur Children’s Hospital and chairman of the Department of Pediatric Neurosurgery at The University of Tennessee Health Science Center (UTHSC).

“He has been really influential, both with medical care and who we are as parents,” says Webb.

When their first child, Carter, was born, the Smiths faced a range of emotions.

“We felt very prepared on the medical knowledge side, but emotionally I was scared,” says Courtney.

carter2

“Carter was our first baby, and I was worried about how I would handle his disability, emotionally and mentally. I also worried about the small things, like if he would be able to breastfeed and him being taken immediately to another hospital after birth and being able to be with him.”

Just hours after Carter was born by Caesarian section, Webb and the baby were rushed to Le Bonheur for Carter’s first surgery. While Courtney recovered from the C-section, Webb was determined to stay by Carter’s side in the Neonatal Intensive Care Unit (NICU), learning everything he could about the challenges that would arise from Carter’s spina bifida, as well as all the general nuts and bolts of caring for a newborn baby.

From that point on, the Smiths were off to the races with Carter. With multiple surgeries and clinical visits, they built strong relationships with a handful of Le Bonheur specialists and nurses, creating a true team approach to Carter’s care. For Courtney and Webb, one of the most important pieces of Carter’s care is maintaining the relationship with Carter’s doctors at Le Bonheur.

“It’s just an overwhelming thing having a special needs child,” said Webb. “It’s just so comforting, when we talk to them, or call them; that support I can’t imagine finding in another team of doctors. I can find another good surgeon, but I can’t find somebody that feels like part of our journey.”

Being partners with the doctors, nurses and staff at Le Bonheur also means working together to ensure Carter, now 8 years old, can advocate for himself. Webb and Courtney have made it a point to always be truthful with Carter about what he was facing. From telling him that yes, a shot will hurt, to explaining a procedure he is about to go through, the Smiths feel strongly that they must always be honest with Carter. They encourage him to ask his own questions and expect his medical team to speak directly to Carter and answer his questions.

carter3

“We’ve always made sure that he had the opportunity to voice his questions,” said Webb, who noted that sometimes the question is very much what an 8 year old might ask, like “Will there be an Icee for me when I come out of surgery?”

“I know some questions can’t necessarily be answered, but he still gets his fair chance, and frankly we’ve had great physicians that have been supportive.”

Like other 8 year olds, Carter is fully involved in being a kid, going to school, playing on adaptive sports teams and thinking about what he’s going to be for Halloween. His 26th surgery took place a few weeks before Halloween, which meant he’d be using a wheelchair instead of crutches for trick-or-treating.

He challenged his dad to figure out a way to decorate his wheelchair as a Mario Kart, so he could still go as Mario, and little brother Cohen was Luigi.

Helping others thrive

During the first few years of Carter’s life, Webb decided to pursue his PhD in Kinesiology and Exercise Science at the University of Mississippi, while simultaneously continuing his clinical and research work. During that time, the Smiths had their second son, Cohen, now 5 years old.

Then, in 2014 came another alignment for the Smiths, when Webb joined Le Bonheur’s Healthy Lifestyles Clinic as a clinical exercise physiologist. He is also an assistant professor in the College of Medicine at UTHSC.

“Le Bonheur and UTHSC were launching a pediatric obesity program, which has been an area of focus for my training and an area I am passionate about as a researcher. Carter had a great team of doctors, nurses and therapists that we didn’t want to leave,” said Webb. “So the stars just aligned.”

Working at Le Bonheur has been a chance for Webb to not only pursue his own passion for combatting childhood obesity in Memphis, it also allows him to be a part of the hospital that has helped Carter and their family through their journey.

“There are great things happening here,” says Webb. “I am excited to contribute to the tremendous mission of Le Bonheur and help families that may be struggling mightily with obesity and its’ complications in the same way Le Bonheur continues to support my family.”

Courtney, who knew at age 5 that she wanted to be a pediatric nurse, realigned her career and is now the nurse at Farmington Elementary School, where both her sons attend. She is also active in parent support groups, serving as a mentor for other families who have faced a similar situation to theirs. Read about how Courtney helped another mom.

carter4

“My husband and I have been blessed with having such a strong medical background when having Carter,” says Courtney. “Since having Carter and learning so much from him, I have mentored several moms who have had children with spina bifida. I love being able to share my knowledge and share Carter with people. He is such a special child and has taught so many people so many things about life.”

The Smiths know that having Le Bonheur down the road was a godsend for their family and are dedicated advocates for the hospital and the families it serves.

“We have raised money through race teams for the Pumpkin Run, for Giving Tuesday, and never miss a chance to donate and support Le Bonheur in our community,” says Courtney. “In fact, my boys’ favorite fundraiser every year is Go Jim Go at our local school.”

Giving back to Le Bonheur is a way to express their gratitude for the services the hospital provides to all families, Courtney and Webb said.

“There are so many resources that we and other families use that would not be possible without the support throughout the community,” Courtney says.

Webb added, “Our son Carter is a happy, energetic little boy because of the fantastic care we have received at Le Bonheur Children’s Hospital.”