Fontan Futures℠ Initiative
Children born with congenital heart disease (CHD) can face many challenges, including multiple surgeries, lifelong medication, abnormal heart rhythms, decreased quality of life, progressive heart failure, and even premature death or the need for a heart transplant. The heart’s stem cells work throughout life to slowly regenerate the heart, but these cells are unable to prevent eventual heart failure, especially for children born with only one ventricle. Before birth, the heart builds itself from within, a process that ceases shortly after birth. Research has shown that young cardiac stem cells do a better job repairing injury than those from adult patients.
Working with a multidisciplinary team from Prentice Women’s Hospital and the Heart Center at Lurie Children’s, a new one-of-a-kind program, the Fontan Futures℠ Initiative, plans to help families expecting a child with only one ventricle save cord blood and heart tissue. The Fontan Futures℠ Initiative, named for a typical stage of surgical repair for these patients, will bank these cells on behalf of our patients through the Mathews Center for Cellular Therapy (MCCT) for use in emerging therapies for cardiac regeneration in coming years. We maintain a detailed database of each of the patients who participate in the Fontan Futures℠ Initiative to help manage patients' care and conduct research over time. This database tracks clinical variables, patient associated biologic samples, contact information and patient-family preferences. It also enables us to track the development of heart failure from a clinical and research perspective.
Phenomenal progress with 3D printed materials, advances in nanotechnology and clinical trials using stem cells strongly suggest that there are opportunities to treat heart failure. Ultimately, this novel program aims to improve the quality of life for children living with heart failure, as well as delay or prevent their need for heart transplantation.
Lurie Children’s has one of only three multidisciplinary pediatric heart centers in the country; an established cardiac biorepository enabling basic and translational research; a dedicated Single Ventricle Center of Excellence; and a leading heart failure and heart transplant program.
Everyone on our team has specialized training: from our cardiac advanced practice nurses to pediatric anesthesiologists and cardiac imagers, to congenital heart surgeons and cardiac intensivists with dual training in cardiology and critical care. We also work closely with The Chicago Institute for Fetal Health, the Division of Neonatology, and the Division of Critical Care.
Conrad Epting, MD, directs basic and translational research in the Heart Center, built the Heart Center Cardiac Biorepository and leads the Fontan Futures℠ Initiative.
How to Participate
Our program plans to works with families expecting a child with critical forms of congenital heart disease who are planning to deliver at Prentice Women’s Hospital. The babies in our program undergo cardiac surgery at Lurie Children’s within the first few weeks of life. These babies typically have conditions such as single ventricle, hypoplastic left heart syndrome and unbalanced atrioventricular canal.
What to Expect
If eligible based on confirmed prenatal imaging, families will be approached during a regular prenatal visit at Prentice Women’s Hospital with their cardiologist. The Fontan Futures℠ Initiative will encompass a consent to obtain and retain otherwise discarded samples, specifically cord blood obtained at the time of delivery, and a blood sample and heart sample at the first open heart surgery. These tissues will be processed and stored at the Mathews Center for Cellular Therapy for three decades on behalf of enrolled children and their families. The goal is to provide children with critical forms of heart disease samples of their own cells to enable future cell-based therapies for heart regeneration and replacement.
Over the years, as the children receive their surgical and medical care at Lurie Children’s through the Single Ventricle Center for Excellence, the Fontan Futures℠ Initiative coordinator will periodically check in to update the families’ contact information, track the development of heart failure symptoms, verify sample storage and inform families of clinical research opportunities nationwide that may be of interest. Furthermore, the Fontan Futures℠ Initiative, in conjunction with the Center for Excellence and the clinical care teams, hopes to deploy patient navigators to serve as guides for both the inpatient and outpatient clinical experience.
Heart Center Family Resource Guide
To help prepare families for their care with Lurie Children's Heart Center, we have compiled a list of resources about treatment and recovery. Learn how to get ready for an inpatient stay or outpatient visit, and read about our support services for patients and families.
Your support is vital in helping us fund the basic and translational research efforts of the Heart Center, and the clinical activities enabling the Fontan Futures℠ Initiative. Lurie Children’s relies on philanthropic funding to enhance its programs, services and research for children. To learn more, please e-mail Lurie Children’s Foundation at email@example.com or call 312.227.7500.