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Pediatric Advanced Cardiac Therapies (PACT)

The PACT team at MUSC Children’s Health Pediatric and Congenital Heart Center is a highly specialized team of physicians, surgeons, nurses, coordinators, pharmacists, dieticians, social workers and other providers and administrative staff who assist in the care of children, adolescents and young adult patients who have failed usual medical or surgical therapy for their heart disease. In addition, we provide continuing outpatient care to children with cardiomyopathy, including an outreach clinic in Greenville, SC.

Services We Provide

  • Comprehensive Cardiomyopathy Care (dilated, hypertrophic, restrictive, left ventricular noncompaction, arrhythmogenic, neuromuscular)
  • Comprehensive Fontan Care (cardiology, PACT, hepatology, nephrology)
  • Home milrinone program for eligible patients regardless of age
  • Mechanical circulatory support and Ventricular Assist Program
  • Advanced rhythm support
  • Heart Transplantation

Ventricular Assist Device (VAD) Program

A ventricular assist device, or VAD, is an electrically powered pump surgically implanted within the chest to take over the work of the heart in severe forms of heart failure. There are different types of VADs that can be used depending on the child/adolescent/adult’s size, underlying heart defect, and the urgency of need for support. Although VADs were designed for hearts that have 4 chambers, our team has extensive experience in the use of mechanical support and VADs in children with complex congenital heart defects, including single ventricle forms of heart disease. Our center is a member of the ACTION learning network, an international collaborative striving to improve outcomes in pediatric VAD and heart failure patients.

Types of VADs

  • Impella—used for temporary or urgent support
  • Pedimag or Centrimag—temporary support or as a bridge to longer term VAD
  • Berlin Excor—long term pulsatile pump placed in the heart, but comes outside of the body. This VAD is used for infants and small children
  • HeartMate III—long term continuous flow pump placed directed in the heart and chest cavity. This VAD can be used in older children, teens, and adults. This is the only type of pump that currently allows patients to be discharged from the hospital

Why a VAD?

Sometimes the heart is too weak or unable to support the body despite other surgeries or medications. If heart failure symptoms continue despite maximizing other therapies, then a VAD may be needed to keep a patient alive.

There are different types and duration of support:

  • Bridge to transplant: the majority of pediatric patients that undergo VAD implant will then go on to receive a heart transplant after a period of recovery and physical rehabilitation
  • Bridge to recovery: if the heart function improves enough during the time on VAD support it is possible that the VAD can be surgically removed (explanted) after a period of weeks to months
  • Bridge to candidacy: some patients that require a VAD may not be a candidate for transplant at the time the VAD is placed but may eventually meet transplant eligibility. Examples of patients include those with recent cancer or significant obesity
  • Destination Therapy: some patients do not wish to have a heart transplant or have other health problems that make them ineligible for heart transplant. These patients will continue to live with the VAD with no plans to explant the device unless recovery occurs

Life with a VAD

Most patients are already in the hospital being treated for heart failure at the time of VAD surgery. It is a very stressful time for patients and their families. Members of the PACT team will meet with the patient and family prior to surgery to provide education and support to help prepare for the surgery, recovery and what to expect long term. The procedure to place the VAD is a surgery that takes several hours. Patients recover in the Cardiac Intensive Care Unit (CICU) initially and may require prolonged CICU stays depending on how sick they are going into surgery, their age, and how much support is needed after surgery.

Most patients will eventually transition to the Cardiac Stepdown Unit (CSD) after an a period of time or recovery and rehabilitation. Depending on the type of VAD, some patients will stay in the hospital until they are able to get a heart transplant or their heart recovers. Older patients that receive a HeartMate III VAD are able to be discharged home with their family or designated caregivers after appropriate training. This process can take weeks or sometimes even months.
Patients that can go home with their VAD will require frequent clinic visits to see the PACT team, lab draws to monitor blood thinner levels and organ function, as well as echocardiograms to monitor heart and VAD function. Many medications are needed for all patients with VADs to optimize blood pressure, organ function, thin the blood to prevent clots inside the VAD, and promote recovery of heart function. Patients with VADs are at increased risk of significant problems that include infections, stroke, and bleeding. We strive to develop a trusting relationship with families to optimize care and outcomes.

Patients can play and participate in fun activities. School-aged children have returned to school with their VADs with the help of the PACT team that performs in-school training for staff. Some patients who live farther away from the Charleston area will be required to stay locally for a period of time after discharge before returning home and the team will assist in arranging local lodging. Patients that are not able to be discharged will be encouraged to attend virtual school and hospital staff, child life and therapy teams will assist in creating structure during long hospitalizations.

We strive to improve not only our patients' and their families overall physical health, but also their emotional and mental health and well-being are of the utmost importance to our team. We work with social workers, psychologists and psychiatrists, music therapy, pet therapy, art therapy and child life services to optimize prolonged hospital stays. Our patients also have access to both indoor and outdoor activity/play areas in the SJCH Atrium.

Heart Transplantation

For those with irreversible heart failure or inoperable severe heart disease, heart transplantation may be a surgical option for long term survival. Referring cardiologists may send patients to meet the PACT team in clinic or in the hospital for those with heart failure significant enough to require hospital admission. Our team will perform a thorough assessment of every patient referred. After initial discussions with patients and their families, a formal heart transplant evaluation will be performed if indicated. Once patients and families have completed the full evaluation, the results of testing and consultations are reviewed to determine if that patient will benefit from a transplant.

After that time a patient may be placed on the national heart transplant waiting list. There are different statuses and estimated waiting times based on how sick patients are and how urgently they need a transplant. These will be discussed in detail during the transplant evaluation. The PACT Team manages patients through evaluation, listing and heart transplant, both in clinic and in the hospital.

Heart transplant is not a cure, but a surgical therapy for end stage heart disease. Transplant comes with its own set of medications, procedures, tests, and complications. Medications are needed the rest of the patient’s life to prevent rejection of the heart. Frequent clinic visits, blood work, echocardiograms, as well as heart catheterizations are required to monitor the new heart function and optimize medication levels. Risks of transplant include rejection, infection, cancer, coronary disease, and side effects from medications. Despite the risks of surgery and long-term complications, they majority of patients grow and thrive after transplant, and they can return to school and sports.

Families will be given many educational materials during the evaluation process. The team will outline specific risks for each patient based on their medical state and testing results. The team will also review outcome data to help families prepare for the future.