Levine Children's Hospital celebrates being named a Best Children's Hospital in four specialties by U.S. News & World Report.
We're proud to be one of the best – but we know it's our patients and families who are truly remarkable. It's your smiles, your tears and your miracles that make us who we are. You are Levine Children's Hospital.
Get to know a few of our heroes. And share a Levine Children’s Hospital experience of your own!
Kimberly, Mother of James,
Kidney Transplant Recipient
Alisha, Mother of Kyler,
Heart Transplant Recipient
Christina, Mother of Mikisa,
Lynne, Mother of Madison,
Cora, Mother of Luke and Jordan,
Kidney Transplant Recipients
Dr. Scott Wait, Doctor of Will,
Brain Surgery Patient
Sofenial, Mother of Leslie,
Heart Surgery Patient
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At 5, James had a different daily routine than most kids his age. He’d come home from kindergarten, play for a little while – and then get hooked up to at-home dialysis for the next 12 hours straight.
“He pretty much had to stay in bed most of the day,” recalls his mother, Kimberly. “He’d be on dialysis overnight, then he’d go off at 7:30 in the morning so he could get to school by 8:15.”
James had been born with chronic kidney disease, and as he’d gotten older, his kidneys had gotten weaker and weaker. Dialysis was doing the job his kidneys couldn’t.
“He had very low function,” says Kimberly. “Kidneys are supposed to filter out the bad stuff, but his weren’t doing that.”
Kimberly says it was hard to go through as a mom. For James, of course, it was even tougher.
“It felt like my body was heavy to carry,” says James, now 10.
Dialysis was keeping him alive, but what he really needed was a new kidney. Soon, they got the news they’d been waiting for.
“The night I got the call, I dropped the phone,” Kimberly says of finding out there was a kidney for James. “I was screaming, and James was dancing all around. He asked me to hook him up to dialysis right then and there, because he knew it would be the last time.”
The family had moved to Charlotte from South Carolina to get care from Levine Children’s Hospital, which has the largest pediatric kidney transplant program in the state. Now, mom and son eagerly headed to the hospital.
“I don’t think there’s a more exciting day than the day of transplant,” says Levine Children’s Hospital pediatric nephrologist Susan Massengill, MD, who oversaw James’ kidney care. Doctors successfully performed the transplant, giving James a new kidney and a newfound sense of freedom.
“They saved my son’s life,” says Kimberly, who thinks of the hospital staff who cared for James as family. “The transplant gave him new life. Now he has freedom, as he says.”
“He’s done extremely well,” says Dr. Massengill. “To look at James walking down the street, no one would ever know he has the condition he has.”
These days, James is full of energy. He loves playing soccer, baseball and video games. And instead of spending hours on dialysis after school, his afternoons are filled playing with Legos.
“Now, I feel like the regular me,” he says.
Before he’d even reached his eighth birthday, Kyler Bebber’s heart had already given out three times. A serious heart defect kept sending the boy into cardiac arrest, leaving his family and doctors wondering when his heart might stop again.
“He literally died each time,” says Kati Robinson, a pediatric heart transplant coordinator at Levine Children’s Hospital. “His heart stopped beating. It was clear we were dealing with a very aggressive disease.”
The disease was hypertrophic cardiomyopathy, a condition that thickens the heart muscle and commonly causes cardiac arrest. So, while Kyler tried to lead a normal life filled with his favorite activities like fishing, hunting and riding his dirt bike, there was always the fear his heart might give out again – and this time for good.
Kyler’s doctors placed him on the list for a heart transplant with United Network of Organ Sharing (UNOS). But because he wasn’t hospital-bound or on life support, he didn’t fit the typical profile of an emergency transplant recipient.
“UNOS didn’t put him at the top of the list for a heart,” explains pediatric cardiovascular surgeon Thomas Maxey, MD. “But he had a severe genetic condition that was causing life-threatening irregular heartbeats. He absolutely needed a heart transplant.”
That’s when Levine Children’s Hospital pediatric cardiologist Gonzalo Wallis, MD, petitioned the UNOS board for a special consideration for Kyler to get a new heart. “The only way we could give him a fair chance at survival and get him transplanted was to appeal and explain the situation to the board,” says Dr. Wallis.
Kyler was on the list for 15 months when his family got the call they’d been waiting for. His mother, Alisha, still remembers that moment.
“They called and said, ‘We have a heart for Kyler.’ I burst into tears – I just couldn’t believe it,” Alisha recalls. “We rushed to the hospital and about seven hours later, Kyler had his new heart.”
Since his transplant, Kyler’s back to his normal, always-on-the-go self. And now, his biggest fear isn’t having another cardiac arrest – it’s taking a fall when he’s out on his dirt bike.
“He’s been negotiating with me on when he can get back to riding his motorcycle,” laughs Dr. Wallis. “He has an amazing future ahead of him.”
Her journey has been a long one: Severely disabled as a baby in Uganda because of a stroke brought on by malaria. Abandoned by her birth family. Adopted at age 5 by an American woman volunteering in Africa.
But for Mikisa, the fog of debilitating epilepsy is lifting and she’s on the road to a childhood her American parents have fought so hard for her to have.
“I was very aware of her challenges when I adopted her,” says her mother, Christina. “Mikisa was so malnourished when I met her. She has epilepsy, most likely caused by the stroke she had as an infant. She was non-verbal, couldn’t walk and was having severe seizures daily. All of that delayed her development greatly.”
Christina got married soon after returning home to Charlotte with Mikisa, and a year later she and her husband had a baby girl, making their family an even four.
Mikisa continued struggling with epilepsy, and her parents continued to hear from doctors that nothing could be done for their little girl. The only option, they heard, was medication to keep her comfortable.
“Those answers weren’t good enough. We wanted more for her,” Christina says. “So we kept looking.”
After seeing Kate Van Poppel, MD, a pediatric neurologist with Carolinas HealthCare System, the family was presented with a radical surgical option: separating the hemispheres of their child’s brain.
“This was the first time someone had mentioned brain surgery, so we were skeptical,” says Christina. “And scared.”
The couple met with pediatric neurosurgeon Mark Van Poppel, MD, from Levine Children’s Hospital. Dr. Van Poppel – incidentally, married to Dr. Kate Van Poppel – specializes in pediatric neurosurgery and determined quickly that Mikisa was a perfect surgical candidate.
“A hemispherectomy is a fairly rare and very involved surgery, and one not commonly performed here in Charlotte,” he says. “I was confident Mikisa would respond well to this treatment. It requires a well-trained pediatric neurologist, a pediatric neurosurgeon and a pediatric epilepsy team (which we now have in Charlotte) working together.”
The team performed the surgery shortly before Mikasa turned 9. “It was very scary. It took five and a half hours,” Christina recalls. “Dr. Van Poppel was great about communicating during those long hours. He had the nurse call every hour and give us an update.”
With the surgery behind them, the family knew they were in for a long recovery. But soon, Mikisa began showing signs of improvement.
“She was back on her feet and walking after four weeks,” Christina says.
And now? She’s running and jumping, and her mom reports that although she still has severe hearing loss, she’s making up for lost time developmentally.
“What the doctors gave us was a fresh start for Mikisa – a re-set button,” Christina says. “We now have hope. We don’t know what the future will hold and whether she will ever be fully independent. But this provides so much more opportunity for her.”
Mikisa’s speech is improving steadily and she continues to make developmental gains. Her doctors say they’re optimistic about her future. “She’s already made huge gains since surgery and is seizure free,” Dr. Mark Van Poppel says.
Mom Christina puts it more simply: “She is so full of joy.”
Madison was born with the heart of an athlete. A runner since elementary school, she joined her school’s cross country team in eighth grade and has been hitting the pavement ever since.
She was also born with scoliosis, a moderate curve in her spine that became more severe as she grew during adolescence.
“Aside from the obvious curvature, Madison noticed it was getting harder to sit all day in the chairs at school,” says her mom, Lynne. “She noticed that her posture was also making it more difficult for her to maintain proper form when she ran.”
Eventually, the scoliosis began making it tough for Madison to find clothes that fit properly – a significant problem for anyone, but especially challenging for a teenager.
By high school, Madison’s spinal curve had worsened to 65 degrees. (Anyone whose spine measures more than 50 degrees on an X-ray is a candidate for spinal surgery.) Madison and her mom did a lot of research before meeting with Levine Children’s Hospital’s Kelly VanderHave, MD, pediatric orthopedic surgeon, so they were prepared for a discussion of the risks and benefits of surgery.
At Levine Children’s Hospital, a team of surgeons, anesthesiologists and child life specialists prepare each patient for surgery. “On the day of Madison’s pre-op appointment, we met with ‘the Caitlins,’ as Madison likes to call them,” Lynne says. “One is a child life specialist, and the other is a nurse from one-day surgery, who had experienced this same surgery herself. They were both phenomenal in helping to decrease Madison’s anxiety – and mine!”
A week and a half after surgery, Madison was able to take a short walk on a local greenway. Though she was initially frustrated by her slow recovery, she kept pushing herself and was cleared by Dr. VanderHave to jog slowly after three months.
Now, Madison’s back to the activities she loved before surgery with no restrictions.
“Madison’s determination and the support she received helped her to improve her performance,” says Lynne. “She made it to the South Carolina cross country state finals just five months after surgery,” Lynne says.
The Ocampos knew before their first son was born that he would need to be monitored for kidney problems, but they never dreamed that both he and their second son – born seemingly healthy – would require kidney transplants.
Cisco and Cora Ocampo discovered that their son Luke’s kidneys were underdeveloped during a routine ultrasound. After he was born, the nephrology team at Levine Children’s Hospital immediately began monitoring him for any issues that could develop.
“We made friends that were being seen by nephrology and that was very encouraging,” Cora says. “One family took us under their wing. Seeing their child doing so well gave us hope.”
Two years later, the Ocampos welcomed their second son, Jordan. However, while he seemed perfectly healthy, they soon learned something wasn’t right.
At Jordan’s one-year check-up, his pediatrician discovered that his weight had plateaued. The doctor decided to do some lab work to rule out anything serious. When the tests came back, they revealed that Jordan was in kidney failure.
“We were in shock,” Cora says. “We thought, ‘What? Kidney failure? This is not happening. We know what kidney problems look like.’”
Jordan immediately began treatment. After two years on dialysis, he received the kidney he’d been waiting for.
Ten months after Jordan’s transplant, his brother Luke reached a tipping point. “The doctor said, ‘You have a choice. You can either go through the same process as Jordan – dialysis and then transplant – or you can put him on the transplant list now,’” Cora says.
After discussion and prayer, they decided to skip dialysis and plan for a transplant.
“That was a leap of faith for us because there was a chance that he could improve with dialysis and not need the transplant,” Cisco says. “But, we knew that the doctors wanted the best outcome for our children.”
When Luke was put on the transplant list, his doctor, pediatric nephrologist Susan Massengill, MD, made a point to see him every month. After a few false starts with finding a potential match, they finally found the right donor for Luke.
“We really appreciated them telling us how meticulous they were in choosing the right donor kidneys for the transplants,” Cisco says. “That gave us a lot of peace.”
Luke was at a regular appointment when the doctor received a phone call telling her that the right donor had been found. Being able to share the good news face-to-face with the patient was a first for Dr. Massengill, who usually shares the news over the phone. Dr. Massengill asked Luke directly if he was ready for his transplant, and the surgery took place the next day.
Both boys continue to be monitored by the nephrology team, and the team does shared appointments for Luke and Jordan, so the Ocampos only have to make one trip.
Today, Luke and Jordan show no signs of the low energy or shyness that plagued them before their surgeries.
“Jordan has two modes: on and off,” Cisco said. “They’re taking piano lessons. They’re into swimming and they love sports.”
“They’re hyper now that they’re done with transplant. They love to explore and they love to go to museums. They love going to church,” Cora said. “I hope that, as they grow, they’ll appreciate the lives that they have and that they do something special with them.”
If you had gone looking for Will any time during the fall of his freshman year, chances are you’d have found him on the baseball field.
For the 15-year-old, life practically revolved around the game. “I played baseball every day,” says Will. “I loved it.”
Then one day during a routine practice, the unexpected happened. As he slid into second base, the ball struck him in the head, hitting him just above the eye.
“I remember trying to get up,” Will recalls. “I was staggering a little bit. Then I passed out.” Will had been wearing a helmet, but when the ball hit him, it caused serious internal damage.
“He ruptured one of the main arteries that feeds the brain,” says pediatric neurosurgeon Scott Wait, MD, one of Will’s doctors at Levine Children’s Hospital. “Frequently, when you tear the carotid artery, it’s fatal.”
Will’s artery wasn’t completely severed, but blood and pressure were quickly building in his brain. He needed care fast, and emergency workers rushed him to Levine Children’s Hospital.
His mom, Jennifer, says it was one of the scariest moments of her life. “I knew he was in good hands, but that this was really serious,” she says.
Doctors quickly drained the fluid buildup to relieve the pressure in Will’s brain. But a few days later, X-rays showed that his weakened carotid artery had become dangerously thin and was at high risk of rupturing again.
Will’s best option was to have a bypass surgery that would close off his damaged carotid artery and re-route some of his other blood vessels to go around it. His family trusted the doctors, but they knew the stakes were high.
“Surgery on your arm or your hand is one thing,” says Jennifer. “Surgery on your brain is totally different.” Cerebrovascular surgery can certainly be complex, says Dr. Wait. “There are a million ways for things to go wrong,” he says. “But the surgery went beautifully, and Will did very well.”
Doctors continued to monitor and treat Will, and soon he was able to head home. After physical therapy, he was back to his old self.
“Today, you wouldn’t be able to tell him from any other kid his age,” says Dr. Wait.
Will says he’s happy his life has gone back to normal. “I’m doing everything that I used to do,” he says with a smile. Well, almost everything. Will’s been advised to stay away from contact sports like baseball. But happily, he’s still been able to get back on the field.
“The coach made me honorary captain of the team,” he says. “I’ve been to almost every game.”
Tobias has always loved to move. But when he caught the dancing bug as a teen, things really took off.
"Dancing just comes naturally to me," says Tobias, 16. "It’s a good way to clear your mind, get stress out of the way, and express how you feel."
He started taking dance more seriously, practicing and getting better. He danced for fun, entered competitions – even appeared in music videos.
At a routine pediatrician visit one day, his doctor noticed something was wrong with his spine.
"When I bent down, she said my spine was off center," says Tobias.
Doctors soon diagnosed Tobias with scoliosis, a condition where the spine is curved. He and his mom headed to Levine Children’s Hospital to find out what he could do – and how having scoliosis might affect his future.
"With the size of his curve and the chance that it would get worse over time, we discussed options and decided the best choice was for him to have surgery," says pediatric orthopedic surgeon Brian Scannell, MD, who cared for Tobias at Levine Children’s Hospital.
Tobias says he was scared when he found out he needed surgery. But he and his mom made the decision to move forward.
"Dancing is my dream," he says. "I wasn’t going to let this stop me."
The doctors took extra care to make sure his surgery wouldn’t limit the teen’s movement. "Being a dancer, that was really important for him," says Dr. Scannell. "He didn’t want to lose a lot of that motion because that would affect his ‘moves.’"
The surgery was a success. Over the new few months, Tobias recovered and went to physical therapy. Soon, he was strong enough to start dancing again.
"I was so happy when Dr. Scannell gave me the okay," he says. "I was ready to get back on my feet."
These days, Tobias is back to dancing, competing and having fun.
"Getting back to dancing has been amazing," he says. "I’m feeling really good."
When Sofenial went into labor six weeks early, she knew that her twin girls, Leslie and Lindsay, were going to be at risk for common complications. But what she didn’t see coming was the serious heart condition present in one of her girls.
At three days old, Leslie was diagnosed with Tetralogy of Fallot, a congenital heart defect that affects the flow of blood in the heart.
“I felt like it was somehow my fault,” Sofenial says. “But the doctor told me it was a common defect in premature babies.”
Leslie’s cardiologist in Fayetteville, NC referred her to Levine Children’s Hospital for open-heart surgery. But before she could have the surgery, she spent two months in her local neonatal intensive care unit, growing and gaining some much-needed weight.
For this new family, balancing the needs of one new baby at home with the needs of her twin, in the hospital, was a unique challenge. But between mom, dad and some help from grandma, they were able to make it happen.
“The hardest thing was when she was still at the hospital,” Sofenial says. “Having one there and one at home, having to go back and forth was really difficult. I couldn’t have managed it on my own.”
When Leslie was six months old, she traveled to Levine Children’s Hospital for her surgery.
“They kept me very informed and were very helpful,” says Sofenial of the surgery. “You could tell they cared.”
Leslie recovered from surgery more quickly than the team expected. A week after surgery, she was headed home. Today, Leslie is happy and healthy, and she continues to grow and improve.
“She’s a strong baby,” Sofenial says. “She plays and she eats a lot more than she did before – she eats more than her sister does!”