Patient's heart story is one of celebrations and setbacks

Seventeen-year-old cardiac patient, Courtney, has celebrated many victories and felt the sting of setbacks on her journey to receiving a new heart. In 2013, Courtney was placed with a ventricular assist device (VAD) at N.C. Children's Hospital, but the celebration was temporary. Now, Courtney's family looks ahead to the next challenge: a heart transplant.

, 17, is like most teenagers. She likes to spend time with her friends. She enjoys playing the piano. She loves her 1-year-old rat terrier puppy. She hopes to get into her dream college and start life as an independent young adult.

But Courtney also deals with health concerns most teenagers never think about—not least of which is a question important to her immediate future: when am I going to get my heart transplant?

A lifetime journey

Courtney was born at a community hospital in Tarboro, N.C. in 1996. A few days after her parents, Debi and Scott, took her home from the hospital, they noticed her breathing was loud and that she had difficulty eating and breathing at the same time.

“We took her to the pediatrician, and they sent her to Pitt Memorial Hospital in Greenville,” says Debi. “They heard some murmurs in her heart and at that point, the pulmonologist at Pitt referred her to the pediatric pulmonology and cardiology team at UNC. It wasn’t a big emergency at that point. There was no NICU or PICU. It was just a watch her and wait kind of thing.”

Courtney was diagnosed with an atrial septal defect, a congenital heart defect that's commonly called “a hole in the heart.” The pediatric cardiology team at UNC repaired it in May 1997, but in January of 1998, Courtney went into heart failure.

“The doctors in the PICU back then just did everything in their power with medicines and treatments to keep Courtney’s heart going without having to transplant,” says Debi. “And because of the doctors and the therapies and, of course, prayer, her heart regained function.”

In the years since, Courtney has been a frequent visitor to N.C. Children’s Hospital, visiting pulmonologists, cardiologists, audiologists, neurosurgeons and neurologists, endocrinologist, orthopaedists, geneticists and even dentists. But it wasn't until the summer of 2013 that her condition became more serious once again.

In June, Courtney was admitted for surgery to replace the mitral valve in her heart. Cardiothoracic surgeon, Michael Mill, MD, didn’t have to perform a full replacement, however, and was instead able to fix her existing mitral valve.

“We went home,” says Debi. “Courtney started applying for jobs. She got her driver’s license. She turned 17. We thought she was on her way to having a bright future.”

As summer wore on, however, Courtney wasn't feeling quite herself.

“Sometime in August, she started getting really tired again,” says Debi. “We went to her doctor here [in Nashville, N.C.], and they sent us to Chapel Hill. Lo and behold, she was in heart failure.”

Courtney was admitted to pediatric intensive care, her family devastated as they watched her condition deteriorate by the day. Desperate to save her life, Courtney's medical team at UNC tried something they don't often attempt with pediatric patients: they implanted a left ventricular assist device (LVAD).

Usually a treatment reserved for adults, the LVAD, a pump that keeps Courtney's left ventricle functioning, is a temporary solution until Courtney can get a heart transplant. Adults can live with LVADs for up to two years.

“It was a big moment for everyone,” remembers Debi of the successful surgical procedure. “It was a big moment for us as parents, because she survived as a result of this pump. We were all celebrating, but I was more focused on celebrating the fact that they had saved my child.”

Courtney's doctors were impressed with the bravery she showed in the face of such a serious a situation.

“The evening of her surgery, she woke up calmly, her breathing tube in place, and asked for a pen and paper,” remembers Courtney's cardiothoracic surgeon, Jennifer Nelson, MD. “On that paper, the first thing she wrote was, 'Thank you. Courtney'. I still have a picture of that note. Every time I look at it, I am blown away by her bravery.”

“It made me cry. It made her mom cry. It was awesome," adds Courtney's crical care doctor, Benny Joyner, MD.

“Within a week, she was sitting up, attempting to eat, and within a month, she was walking."

Courtney’s LVAD is connected to her at all times. It hooks up to a controller that functions using batteries or an electrical outlet. Courtney puts the machine in a backpack that she takes with her everywhere she goes.

“Showers are difficult. Getting from point A to point B is more difficult,” says Debi. “But at the same, we’re so thankful. I’m just so glad she had an option.”

“It’s hard going through all of this,” says Courtney. “I’m missing a lot in my personal life. I could have done more extracurricular activities if it wasn’t for this health stuff. I wish I could spend more time with my friends.”

But, says Debi, even though it’s hard for Courtney, the family maintains a positive outlook on her medical challenges.

“We could have a poor-me attitude or sulk about it,” says Debi. “But Courtney’s been dealing with something all the time, for the past 17 years."

“Courtney is no ordinary young lady,” adds Dr. Joyner. “Her journey has been a difficult one, with time spent in and out of the hospital for a variety of ailments. But all the while she's maintained a stellar school record and a love for math.”

“Courtney is one of the most gracious, kind-hearted, 'glass-half-full' patients I have ever cared for,” adds Dr. Nelson. “It was incredibly inspirational to see Courtney improve after receiving her VAD. Watching her get up to walk after weeks of struggling just to turn in bed was a great moment for our whole team. Before long, her mother showed us videos of Courtney dancing along with Dance, Dance Revolution in the hospital. It was hard to hold back tears.”

The road ahead

Unfortunately, Courtney’s heart journey, which began at UNC almost two decades ago, won’t end with her transplant at N.C. Children's Hospital. The family’s insurance company won’t cover the transplant in-network at UNC. It comes as a hard pill to swallow for the family.

“Our relationships at N.C. Children’s are priceless,” says Debi. “We know the campus with our eyes closed. We’re so comfortable her medical team. We trust them. They’ve known Courtney for 17 years, and they would do anything to keep her alive.”

“I have a great bond with my nurses” adds Courtney. “I’m Facebook friends with a lot of them, and we have great relationships with each other.”

Debi especially appreciates how the Children's Hospital staff treats the whole patient, rather than just the diagnosis.

Courtney and her family prepare for the next step in her heart journey: a transplant.“It’s so wonderful what they do to engage their patients,” says Debi. “There are so many things Courtney has to look forward to instead of just dreading all the tests and blood draws. It makes a big difference, they treat her on a personal level—and they take care of the family. We're important to them, too.”

“They made sure we knew where to get food, and they made sure to take care of her brother and us. Even if it’s just bringing us an extra cup of ice cream that they have in the freezer, they always took care of us.”

As Courtney faces a heart transplant at a different hospital, her mom feels sure that, despite leaving the comfort of N.C. Children’s Hospital, the staff at the new hospital will grow to love Courtney, too.

“The transplant process is moving along,” says Debi. “It’s not an emergency. Courtney could live with the LVAD for up to two years, but we know Courtney is ready to put this whole thing behind her.”

And even with the transplant, Courtney's heart journey won't be over.

“We know that a transplant isn’t a fix-all. It has to be cared for with medicine, procedures, tests,” says Debi. “We’ve been educated pretty well about it. But we have no choice. It will give her another 15 years or more to reach her goals. We know that a new heart doesn’t last forever, but we'll get to that when we get there. Right now, we want her quality of life to be the very best possible.”

In the meantime, as Courtney waits for her new heart, she looks forward to the future it will provide.

“I just want to be able to finish high school and go to college,” says Courtney. “I want to become a teacher at the deaf school. I love sign language—I taught myself using YouTube and books.”

As they reflect on Courtney’s heart journey to-date, the family is filled with gratitude.

“We thank everyone at the hospital for everything they’ve done,” says Debi. “Courtney wouldn't be alive without that heart working for her.”