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The Advanced Cardiac Therapies Program at the Children’s Healthcare of Atlanta Heart Center is dedicated to helping heal the smallest hearts. Our team of experts provides innovative and compassionate cardiac care for children and families affected by all forms of advanced heart failure and cardiomyopathy. Our comprehensive services include medical treatment of end-stage heart disease, heart transplantation, and ventricular assist device implantation and management.

Dylan's journey to a heart transplant

Diagnosed with heart failure at just 5 years old, Dylan had to wait nearly a year to receive a new heart.

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The Advanced Heart Failure Program provides comprehensive specialty care for children and young adults with advanced heart failure and all forms of cardiomyopathy. Our Heart Failure Clinic is designed to provide multidisciplinary care for children with advanced heart failure, and our program is certified by the Children's Cardiomyopathy Foundation

What is heart failure?

Heart failure is a medical condition associated with a group of signs and symptoms that occurs when the heart does not fill or pump adequately to meet the demands of the body. Heart failure can occur at all ages and result from many different forms of heart disease, including congenital heart disease, cardiomyopathy, myocarditis and cardiotoxicity.

What is advanced heart failure?

Advanced heart failure occurs when there are frequent symptoms or a significant impairment of heart function typically requiring a combination of heart failure medications. For patients with severe symptoms or disease, additional therapies, like special pacemakers, implantable cardiac defibrillators, ventricular assist devices and cardiac transplantation, may be required.

What are common causes of heart failure in children?

Heart failure can occur in newborns, infants, toddlers, children, teenagers and adults for a variety of reasons. Our team will identify and discuss your child's specific reason for heart failure with you, and we will develop a plan that addresses your child's individual needs. 

Common categories of heart failure include:

  • Cardiomyopathy: An abnormal heart muscle that is either congenital (or present at birth), or caused by other diseases. There are many different forms of cardiomyopathy.
  • Congenital heart disease: The result of a child being born with heart chambers and connections that are not formed normally. This can result in stress and damage to the heart muscle.
  • Myocarditis: Infections or inflammatory disorders that can cause injury to the heart muscle.
  • Cardiotoxicity: A muscle injury that may result from certain medications and treatments, such as chemotherapy and radiation.

What is a ventricular assist device (VAD)?

A VAD is a mechanical pump that supports heart function and blood flow in people who have weakened hearts. The device takes blood from a lower chamber of the heart and helps pump it to the body and vital organs, just as a healthy heart would.

Our highly specialized VAD team helps choose the VAD that is the best treatment option for your child—whether the goal is full recovery or long-term care. At Children’s, we have cared for more than 50 children with VADs. About one-third of our patients receiving heart transplants are now supported with a VAD prior to their transplantation, and more than 90 percent of our VAD patients have successfully received heart transplants.

What are the different types of VADs?

Children’s provides the following types of VADs:

Short-term support devices

  • ECMO, or extracorporeal membrane oxygenation, uses heart and lung bypass machines to assume a patient’s heart and lung functions, allowing blood and oxygen to flow to the body adequately, while the heart and lungs heal.
  • Impella® devices are catheter-based heart pumps inserted in the cardiac catheterization lab that can support the heart function until recovery or longer-term treatments can be planned.
  • PediMag™ and CentriMag™ are surgically implanted continuous-flow pumps that sit outside the body and help augment heart pumping until recovery or conversion to another pump, like the Berlin Heart® EXCOR®.

Long-term support devices

  • The Berlin Heart® EXCOR® is a surgically implanted pulsatile pump that sits outside the body and helps critically ill children waiting for a transplant. One or two Berlin Heart pumps can be used to efficiently support one or two pumping chambers of the heart. This allows the child to come off the ventilator, eat on his own, walk around and undergo physical therapies, which helps him become a stronger candidate for a transplant when a donor heart arrives, even though he must remain in the hospital.
  • HeartWare HVAD and Heartmate 3™ are surgically implanted continuous-flow pumps that are placed inside the body with a small driveline cable exiting the body that connects to a controller and power source. These devices, designed for large children and adults, can support heart function until a heart transplant or can be used as destination therapy. Children with these devices can return home and go to school while waiting for a heart transplant.
  • Jarvik 2015 is a small, surgically implanted continuous-flow pump designed for our smallest children. Like the HeartWare HVAD and Heartmate 3™, this pump is placed inside the body with a small driveline cable exiting the body that connects to a controller and power source. This device is currently undergoing an investigational trial sponsored by the National Institutes of Health (NIH) and is available to select patients at Children’s.

Children’s is home to one of the top 10 largest pediatric heart transplant programs in the country. Combining the latest proven technology and research with a caring, child-friendly approach makes Children’s a top choice for pediatric heart transplantation.

A few facts about our Heart Transplant Program:

  • We have performed 400 heart transplants since the program’s inception in 1988.
  • We are ranked in the top 10 in the country for pediatric heart transplant volumes.
  • Our Heart Transplant Program has higher 1-year and 3-year survival rates than the national average.
  • Our Heart Transplant Program has shorter wait times than the national average.
  • Our researchers are seeking new ways to prevent, diagnose and treat the conditions that can lead to transplantation, in addition to investigating transplantation-related techniques and complications.
  • U.S. News & World Report ranked our pediatric heart and heart surgery programs among the top programs in the country.

Our facilities were designed with children in mind, helping patients and families feel at ease in our welcoming and spirited environment.

One-year pediatric heart transplant survival rate

Three-year heart transplant patient survival rate

 

Frequently asked questions about pediatric heart transplants

What if my child needs a heart transplant?

Before your child is approved for a pediatric heart transplant, he will undergo a transplant evaluation—a series of tests that may include a routine medical exam, blood tests, imaging tests, breathing tests and other evaluations.

If the child, family and heart transplant team decide that a pediatric heart transplant is appropriate, the next step is to place the child on the national waitlist for a donor heart.

United Network for Organ Sharing (UNOS) is the national agency that oversees organ transplantation. This agency works with our local procurement agency, LifeLink of Georgia, to recover organs. UNOS also maintains the national computerized list of people waiting for heart transplants.

How do the heart transplant waitlist and heart transplant donor processes work?

Once a decision has been made to move forward with a heart transplant, the heart transplant coordinator will place the child on the heart transplant waitlist through the secure UNOS website. The child will be listed as status 1A, status 1B, status 2 or status 7.

Status 1A: The patient must meet at least one of the following conditions:

  • Needs help breathing with a ventilator.
  • Needs support with a mechanical device such as ECMO or a ventricular assist device.
  • Is younger than 6 months old with heart disease and needs continuous prostaglandins (PGE).
  • Needs certain IV medications, knows as inotropes, at a high dose; has congenital heart disease; and requires inpatient support.
  • Is expected to live less than 14 days without a heart transplant.
  • Status 1B: The patient does not meet criteria for status 1A and must meet at least one of the following conditions:
  • Needs IV medicine, known as inotropes, at a high dose without congenital heart disease.
  • Has hypertrophic cardiomyopathy or restrictive cardiomyopathy and is younger than 12 months of age at time of listing.

Status 2: A patient requires a heart transplant but does not meet the criteria for statuses 1A or 1B.

Status 7: A patient is temporarily inactive on the transplant list. For example, the patient is too sick or too healthy to accept an organ.

The heart transplant donor process begins when a heart is donated from someone who has been declared brain-dead and whose family has agreed to organ donation. The donor’s medical information is entered into the UNOS database, and UNOS will notify Children’s that a heart is available. The transplant surgeon and team determine whether to accept or decline the organ—this is based on whether or not the heart is a good match for your child. The transplant coordinator will contact you when a heart that is a good match for your child is available.

How does the heart transplant patient-matching process work?

The UNOS waitlist has a pool of patients who are waiting for a heart donation. When a heart is available, UNOS searches the entire pool for a potential match.

Factors involved with matching include:

  • Location of the heart and the child.
  • Amount of time the child has been on the waiting list.
  • Size of the child.
  • Status of the child.
  • Blood type: Your child can receive a heart from someone with the same or compatible blood, while infants may be eligible to receive a heart from someone with any blood type due to their immature immune systems.

What can I learn about the heart transplant donor?

Families often want to know the age of the donor and how the donor died. Information about the donor cannot be shared. Likewise, information about the heart transplant recipient and his family will not be given to the donor’s family without consent.

LifeLink will contact the donor family to let them know which organs were successfully transplanted. If the transplant recipient’s family gives permission, we will give LifeLink a small amount of nonidentifying information about the recipient, as LifeLink strongly believes that following up helps the donor family move forward as they grieve the death of their child.

If a family wishes to, they can write a letter to the donor’s family that does not include identifying information. The Children’s heart transplant coordinator will send the letter to LifeLink of Georgia, which will forward it to the donor family.

Our Advanced Cardiac Therapies program is dedicated to advancing the field of advanced heart failure and heart transplantation. We work with many national and international registries and participate in research studies to improve the care of children and young adults with heart failure, including:

  • PediMACS: The Society of Thoracic Surgeons (STS) Pedimacs database was established at the University of Alabama Birmingham to capture data that is unique to the pediatric population receiving VAD therapy. It is the pediatric equivalent of the adult Intermacs database.
  • ACTION: The ACTION Learning Network is a cooperative partnership of pediatric heart centers, industries and families focused on improving the care of children and young adults with all forms of heart failure. There are multiple research projects, quality and educational programs and national advocacy initiatives currently driven by ACTION.
  • Pediatric Heart Transplant Society (PHTS): PHTS is a multidisciplinary organization that aims to improve the treatment of children during listing and following heart transplantation. Many of the major research studies in pediatric heart transplantation have come from PHTS data and PHTS centers, like Children’s.
  • PANORAMA: PANORAMA is a multicenter, international study evaluating the safety and efficacy of a novel heart failure drug, sacubitril/valsartan (Entresto), in pediatric patients. This study is like the pivotal PARADIGM-HF in adults, which has led to significant improvements in heart failure outcomes in adult patients
  • TEAMMATE: TEAMMATE is a multicenter study evaluating the long-term effects of everolimus and tacrolimus against more traditional tacrolimus and mycophenolate to determine if everolimus may be a better long-term, primary immunosuppression strategy for pediatric heart transplant patients.
  • PumpKIN: PumpKIN is a multicenter study sponsored by the National Institutes of Health (NIH) to evaluate the Jarvik 2015 ventricular assist device. The Jarvik 2015 is a novel ventricular assist device for smaller children which is the first fully implantable device for infants and toddlers.

At the Children’s Heart Center, our cardiothoracic surgery team is dedicated to the well-being and care of children of all ages—from birth to 21—who have been diagnosed with a congenital heart defect. Each of our heart surgeons is certified by the American Board of Thoracic and Cardiac Surgery with a subspecialty in congenital cardiothoracic surgery.

Cardiothoracic surgery and cardiology

Nurse practitioners

  • Mallory Carroll, MSN, CPNP-AC
  • Charissa Deckelmann, MSN, CPNP-PC
  • Diane Krasnopero, DNP, CPNP-AC/PC
  • Diane Storie, MSN, CPNP-PC

Registered nurses

  • Alissa Martin, RN
  • Faith Szink, RN

Administration

  • Luz Oquendo, Administrator

Cardiac genetic counseling

  • Erin Demo, MS, CGC

Cardiac rehabilitation

  • Goutham Vennapusa, MS

Nutrition

  • Jillian Mingle, MS, RD, CSP

Pharmacy

  • Rochelle Liverman, PharmD
  • Staci Glumova Serluco, PharmD

Psychology

  • Gloria Chiang, PhD

Quality

  • Jennifer Brasch, RN, CPN
  • Charlotta Eriksson, MHA

Research

  • Melissa Burnett
  • Susie Gentry, RN

Social work

  • Molly Dugan, LCSW, CCTSW-MCS

Meet Our Heart Surgeons