Heart failure in pediatric patients arises mainly from cardiomyopathies or untreated congenital heart diseases (CHD).1 One meta-analysis suggests that 12,000 to 35,000 children are affected, a prevalence of between 164 to 480 per million children.2 The number of pediatric patients with heart failure has increased more than 30% recently, the increase owing mostly to better therapies, increased survival of surgically treated CHD patients, and earlier recognition and treatment of cardiomyopathies.3 These patients need ongoing care, and many will eventually require heart transplantation, still the therapeutic gold standard for end-stage heart failure. The recent development of smaller ventricular assist devices (VADs) suitable for pediatric populations has provided new options and longer-term support for these patients.1,3
Through improved treatments and short- and mid-term mechanical support (such as with extracorporeal membrane oxygenation [ECMO]), pediatric heart failure has become more successfully managed. The number of pediatric donor organs available for heart transplant, however, has not increased, remaining steady at about 550-600 available annually worldwide.1,3 Nationwide in 2016, surgeons performed 445 pediatric heart transplants, with many of these patients requiring support before transplantation.1 Infants and small children with advanced heart failure have the highest risk of death, partly because of the lack, until recently, of small VADs, which serve as longer-term support and a bridge to transplant.3 Long-term survival of pediatric patients supported with VADs has been shown to be equal to that of patients not requiring such support,4 and some patients with a VAD can recover sufficiently to have the device deactivated without transplantation.5
Since 2011, new, smaller VADs have been approved, and others for infants and small children are being developed or tested in clinical trials. Joining a series of EXCOR® devices, the Berlin Heart EXCOR 15-mL VAD (Berlin Heart AG, Berlin, Germany) approved in January 2013 bridges a clinically important gap between the smallest EXCOR device (10 mL) and the next larger size (25 mL). The new device demonstrated optimal VAD support of children with a body surface area of 0.33 to 0.5 m2 (children up to 10 years of age).6
Another device, the Jarvik 2015 VAD (Jarvik HeartTM, New York, NY), has been given conditional approval for use in a comparative clinical trial and is being tested in the PumpKIN trial.7 The implantable Jarvik device, which is about the size of a AA battery, serves smaller patients (those weighing 8 kg or less) and could eventually allow infants on VAD support to await transplant at home. Each of the VADs will be implanted in 44 patients (total of 88) at 22 institutions, including at University of Minnesota Health locations. The trial has begun with the 5 centers that have the highest pediatric VAD volume, with University of Minnesota Health locations participating in a later phase of the study.
University of Minnesota Health physicians are also involved in clinical trials on improving quality of care for congenital heart problems, such as hypoplastic left heart syndrome, and in testing smaller pediatric VADs. Their findings on pediatric heart transplant patients with complex needs have highlighted the importance of experienced, multidisciplinary team-managed care.8
University of Minnesota Health surgeons and cardiologists treat many pediatric heart conditions and offer a wide range of therapies that include surgery, medication, device support, and heart transplantation. Our surgeons perform 20 to 30 heart transplants annually in children and adults, placing our program among the top 15% in surgical volume for these procedures in the United States. Our program is also among the longest running programs in the world. We performed the first heart transplant in an infant and the first stage 1 hybrid Norwood procedure in the upper Midwest. In all, we have conducted more than 800 heart transplants, more than 100 in children, the youngest of whom was 1 month old.
Our multidisciplinary team includes coordinators, pediatric cardiologists critical care physicians, surgeons, a neuropsychologist, social worker, pharmacist, financial counselor, and dietician. Our surgeons have placed multiple ventricular assist devices, including pediatric ventricular assist devices to support infants, children, and adolescents as a bridge to transplantation. Where appropriate, the new implantable devices can allow patients to remain home while awaiting transplant. In patients for whom this is not possible, our services include housing, transportation, and emotional support. Most of our patients leave the hospital within 2 weeks of receiving transplants and can receive long-term follow-up care.
We also serve patients who have other heart conditions. Our physicians are engaged in research and clinical trials testing heart failure treatments, ventricular assist devices, and new approaches to patient care. Through our relationship with the University of Minnesota, we give patients access therapies under clinical trial review.
To learn more about transplant patient care management, contact Rebecca Ameduri, MD, Medical Director of the Pediatric Heart Failure and Transplant Program.
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