“In the last two decades, we’ve really burst onto the scene,” he says. “We’re engaged in exciting research not found elsewhere, and we offer the full spectrum of cardiac care — from fetal diagnosis through specialized treatment for children and adults with highly complex congenital conditions.”
Dr. Cetta points out several accomplishments:
“Mayo’s pediatric cardiology had a heyday in the 1970s when surgical treatment for complex cardiac lesions such as atrioventricular septal defect, truncus arteriosus and single ventricles (Fontan operation) were developed.
Many of the major modifications to these operations were first performed or described at Mayo. But we’re undeniably experiencing a golden age now,” he says. “I’m excited about what is yet to come from this group.”
The division is well balanced, with senior consultants who have decades of experience working alongside younger consultants — five of whom have joined the practice in the last four years. The newcomers bring vibrant energy to the program, according to Dr. Cetta.
“If you search for papers published in pediatric cardiology by city name, anywhere in the world, Rochester is in the top 10,” he says. “The academic prowess of the division is evidence that we’re advancing knowledge in this constantly changing field. The research coming out of this group is invigorating and shows that we are committed to being at the forefront of pediatric cardiology.”
“Pediatric Cardiology is one of our most academically accomplished divisions, which means most consultants are full professors in a relatively short time,” he says. “Pediatric Cardiology is a jewel in the Mayo Clinic Children’s Center crown.”
Dr. Cetta explains the advantage of a pediatric program ensconced within an adult program — a pediatric hospital within an adult hospital; a pediatric cath lab within an adult cath lab; pediatric cardiologists, cardiac surgeons, transplant surgeons and interventional cardiologists working alongside world-renowned adult counterparts.
“Mayo’s adult cardiologists and surgeons are familiar with equipment and clinical situations not often encountered in pediatric practice,” he says. “Not only do pediatric patients have access to the expertise of pediatric specialists, but they also have access to every expert who cares for adult patients. Our colleagues in adult cardiology are always available — just a hallway away — and our close collaboration is a great benefit to patients.”
As patients transition from pediatric to adult care, they can work with the same nurse coordinators in the same clinic in the same practice for their lifelong care.
“They can see physicians in a familiar environment who work side-by-side with the physicians they’ve seen their whole lives,” says Dr. Cetta. “The continuity of care available to our pediatric patients is unparalleled.”
Working toward a future without transplants
In the years since those transplants, Mayo’s Pediatric Heart Transplant Program has flourished, in part due to the interest, enthusiasm and commitment of Jonathan Johnson, M.D., the program’s medical director since 2012.
“I fell in love with Mayo Clinic when I interviewed during medical school,” he says. Early in his residency in pediatrics at Mayo, he was leaning toward specializing in pediatric hematology/oncology.
“A week rotating with Dr. David Driscoll in the pediatric cardiology clinic changed that,” says Dr. Johnson, who subsequently completed a fellowship in pediatric cardiology and was asked to stay on in the transplant program. “During the last year of my fellowship I saw every pediatric transplant patient that came to the clinic, including the Rippy sisters, and as many adult transplant patients as possible. Dr. Cetta has given the Pediatric Heart Transplant Program every resource we’ve needed. This is my dream job.”
Dr. Johnson has contributed to 65 peer-reviewed publications and eight book chapters in his short time on staff at Mayo Clinic. He’s eager to get the word out about Mayo’s expertise in pediatric heart transplantation.
“We can take on complex transplants that some places don’t want to take on, including transplanting patients from as young as 28 days old to adult congenital heart disease patients with multi-organ failure,” he says. “Part of our mission is to understand what can be done, stretch our capabilities and expand the indications for transplant. Despite taking on complicated patients, our outcomes are equal to if not better than anywhere else in the country.”
Other differentiators of the Pediatric Heart Transplant Program include:
Regenerative medicine for young hearts
Despite the success of Madison and Sydney Rippy’s heart transplants, they will need to take immunosuppression medication for the rest of their lives, which is particularly hard on the kidneys. The sisters could need kidney transplants in the future. But that’s not the worst of it. Heart transplants in children usually only last 15 to 20 years, which means the girls will likely need new hearts in early adulthood.
“Organ transplantation is a miracle for families like the Rippys but has very severe consequences for young children due to immunosuppression therapy and other lifelong side effects,” says Timothy Nelson, M.D., Ph.D., director of the Regenerative Medicine Consult Service for the Transplant Center.
In the future, children like Madison and Sydney may have better options. Mayo Clinic is actively studying regenerative medicine therapies that could delay or eliminate the need for transplant. This includes the only FDA-monitored clinical trials for regenerative medicine therapies in pediatric heart patients. Mayo Clinic has three of these phase I trials underway.
“There’s nothing we can offer today in terms of these therapies, but we hope our clinical trials will lead to treatment options,” says Dr. Nelson. “Our long- term vision is to make young hearts strong enough to eliminate the need for transplant. We’ll achieve that vision when we determine the right cells and when to give them to effectively rebuild the heart.”
Madison (Madi) Rippy was 2 years old when she had a stroke and was taken to Children’s Hospital in Minneapolis. An X-ray showed a severely enlarged heart, and the cardiologist recommended the family go to Mayo Clinic for transplant medicine expertise. Madi received a heart transplant a year later, and the family met Jonathan Johnson, M.D., who was completing his fellowship.
“He’s been through this journey with us and is our go-to guy — our rock,” says Linsey Rippy about her daughters’ cardiologist. “He’s an incredible doctor and incredible person.”
Three years later the Rippy’s younger daughter, Sydney, also needed a heart transplant. Both girls had dilated cardiomyopathy. Mayo had monitored Sydney since birth due to her sister’s condition. Sydney didn’t show any evidence of a heart problem until she was 2.
“Mayo’s diligence and tenacity saved Sydney’s life,” says Rippy. “Even though her echocardiograms were normal at birth and age 1, Mayo kept a close eye on her. We believe that attention saved her from having a drastic event.”
Recently Madi, now 10, was taken to Mayo Clinic by ambulance with a serious blood clot. When her parents arrived at the hospital, Dr. Johnson was waiting for them.
“I was crying and freaking out, afraid Madi would die,” says Rippy. “There was Dr. Johnson, in his street clothes, wanting to see her for himself and reassure us. It shows me how invested he is in my daughters’ success. When I saw him, I felt like I could breathe for the first time. He hugged me and gave me more hope.”
Rippy says her daughters are invested in Dr. Johnson, too. During a Make-A-Wish trip to Disneyworld, they attended a Muppets show, and Madi said, “I can’t wait to tell Dr. Johnson about this. He loves the Muppets — this show would be his favorite.”
“For them, the transplant center is a place of comfort,” says Rippy. “We’ve gotten so spoiled at Mayo. We know other transplant families who wait days for test results and weeks between appointments. Mayo does team- based care like nowhere else. We’re never rushed through appointments. They treat us with the utmost care for as long as we need it. Dr. Johnson wrote letters on our behalf when our school district tried to change our daughters’ school because the special education classroom population was too large.
“Sometimes when we groan about the 95-mile drive, my husband and I remind each other that Mayo is a car ride away, not a plane ride away. People come to Mayo from all over the world. We can get there in two hours.”
Sydney Rippy needs orthopedic surgery to lengthen a calf muscle and could have the procedure closer to home. The Rippys have chosen to have the surgery at Mayo Clinic.
“We feel more secure knowing her whole team will be available to address all aspects of her needs,” says Linsey Rippy. “And it’s more relaxing for me. I won’t have to be the nurse and tell everyone about her transplant medications because everyone at Mayo is so good. I can focus on just being mom.”
The Rippys are hopeful about the future for their daughters and other transplant families. “The regenerative medicine therapies Mayo is pursuing may mean other families won’t have to go through what we’ve gone through,” says Rippy. “We’ll never get to hear the word ‘cured’ with our children, but who knows where medical science will be in 10 years? Our kids and others may be able to have a more normal or typical future.
“Often people don’t associate Mayo with kids. Our kids are alive because of Mayo. We trust them so much. They treat our kids like their own. We’re at the absolute best place.”
This article is extracted from a longer feature in Alumni Magazine, Issue 4, 2016. Other sections in the full article discuss the ways that adult cardiac care and research expertise benefits pediatric patients, electrophysiology and echocardiography programs, and special programs for rare conditions.