A Heartbeat Away From Family

For patients facing the challenges of pediatric heart failure, the nurses driving bedside education and operations for Le Bonheur’s Ventricular Assist Device (VAD) and Transplant programs feel like family.

When 5-year-old heart patient Lilly Burks, arrived at Le Bonheur Children’s Hospital for a routine surgical repair earlier this year, her parents never dreamed she would soon be awaiting a heart transplant.

Born five weeks early, Lilly had pneumonia often as an infant, and chest X-rays on her first birthday revealed what looked to be a common congenital heart defect (CHD). Plans were made to surgically correct the issue around age five.

But during Lilly’s operation, her surgeons discovered that Lilly’s CHD was an extremely rare, an inoperable, structural defect. Within 48 hours of admission to Le Bonheur, Lilly’s medical team performed three surgeries to support her limited heart function — the last of which was implantation of a VAD, which helps pump blood from the heart to the body for patients in heart failure. Lilly’s heart could no longer function on its own, and her VAD became a bridge offering support until transplant.

In the face of an unexpected and difficult diagnosis, Heart Transplant and Ventricular Assist Device Coordinator, Tiffany Street, RN, BSN, and VAD Coordinator Amber Merritt MSN, RN, CCRN-K, RN-BC, have been there to walk beside Lilly and her family every step of the way.

Le Bonheur has been outstanding, and the people caring for Lilly have made us feel like family. Tiffany is extremely easy to talk to and understands my anxieties, and Amber and I talk almost daily about any questions or concerns I have. I feel like I could call her at midnight and she would answer

“We came in for a planned surgery, and this is where we are now. But Le Bonheur has been outstanding, and the people caring for Lilly have made us feel like family,” said Lilly’s mom, Jessica. “Tiffany is extremely easy to talk to and understands my anxieties, and Amber and I talk almost daily about any questions or concerns I have. I feel like I could call her at midnight and she would answer.”

Street, who was instrumental in launching Le Bonheur’s Heart Transplant and VAD programs, leverages not only her clinical nursing background, but past experiences in entrepreneurship and project management, to help ensure programs run smoothly and families have access to everything they need — physically, emotionally and otherwise.

“We are here to relieve a family’s anxiety and help bring a sense of calm,” said Street. “This experience is unknown and scary, and our families are desperate to hear a comforting voice. I would much rather a parent call and wake me up in the middle of the night to help alleviate their fear, than live with that fear overnight.”

Currently, five Le Bonheur patients are awaiting heart transplants, and Street leads weekly transplant classes for these patients and their families. Topics range from post-transplant nutrition and medications to coping with grief and what to expect before, during and after transplant. Street also provides staff education on transplant and VAD care for all cardiac bedside nurses, who play a crucial role supporting good outcomes for every patient.

Merritt, meanwhile, helps empower patients and families to manage VAD care independently, instructing them on VAD dressing changes and other routine device maintenance. Through a new outpatient program allowing some VAD patients to recuperate at home, Merritt also partners with patients’ local medical communities to offer VAD education and design emergency protocols. The first steps toward discharge, though, are the ones a patient must take following surgery.

“Each time one of our VAD patients gets out of bed to walk again for the firsttime since implantation, it is so rewarding,” said Merritt. “Seeing patients who would not be here without these therapies successfully rehabilitate, spend time home with family and receive the support needed to reach the transplant stage is hands down the best part of my job.”

We are here to relieve a family’s anxiety and help bring a sense of calm. This experience is unknown and scary, and our families are desperate to hear a comforting voice.

Since the launch of Le Bonheur’s VAD and Heart Transplant Programs five years ago, the teams have placed a total of 29 VADs and completed 49 heart transplant. And one of the most recent of these transplants, was Lilly.

On July 10 — just 49 days after arriving at Le Bonheur — Lilly underwent transplant surgery to receive a new heart. While her parents know the road to recovery is long, they are breathing a sigh of relief that Lilly made it safely through transplant, and they know Merritt, Street and the rest of their Le Bonheur team will walk beside them as they navigate these next steps.

“When I receive pictures from parents of kids doing things that are now possible because of a VAD, or a new heart — the feeling is indescribable,” said Street. “It’s incredibly rewarding to be part of a family’s post-transplant journey and see how, through a truly amazing team effort, our patients are given new opportunities and a new life.”