Personalized Post-Op Care for Pediatric Heart Disease

By Robin Overbay
Thursday, June 23, 2022

Providers in the Pediatric Cardiac Intensive Care Unit at Penn State Health Children’s Hospital deliver postoperative care to the patient while also preparing families to transition to care at home.

Congenital heart disease (CHD) is the most common birth defect in the U.S., affecting not only the newborns but the families who care for them. About 1 in 4 patients with CHD need surgical intervention, and some of these require multiple surgeries through the years. Hospitals can be frightening for little ones, so Penn State Health Children’s Hospital staff members take creative measures to lessen any potential anxiety or intimidation surrounding hospitalization and medical procedures.

Collaborating for Quality Improvement

Penn State Health Children’s Hospital has a robust, multidisciplinary CHD team, including pediatric and congenital heart surgeons, cardiologists, critical care physicians, advance practice providers, registered nurses, respiratory therapists and other specialists. With a focus on research and advances for CHD, they have obtained some of the best patient outcomes in the nation (see “Accolades for Surgical Care” on Page 9). Those advances include surgical interventions, of course, but they also involve patient care before and after surgery.

“I work closely with Dr. Myers and Dr. Clark [pediatric and congenital heart surgeons at Penn State Health Children’s Hospital], and they are great surgeons to work with,” says Elizabeth Schaeffer, MSN, RN, CCRN, clinical practice nurse leader in the Pediatric Cardiac Intensive Care Unit at Penn State Health Children’s Hospital. “We collaborate on numerous quality improvement projects.”

Nurses, respiratory therapists and other staff go through an intense training and orientation program prior to taking care of complex CHD patients. Schaeffer states that staff members are extremely knowledgeable in the care of patients with congenital heart disease, no matter the defect.

Advanced Technology, Child Life Awareness

The Pediatric Cardiac Intensive Care Unit at Penn State Health Children’s Hospital has all the capabilities required for monitoring and treatment following cardiac surgery, including extracorporeal membrane oxygenation and everything needed for hemodynamic monitoring. They also offer continuous renal replacement therapy if needed for patients with renal involvement.

Penn State Health Children’s Hospital also offers several supportive services tailored to the care of children to put them at ease and reduce emotional distress. Professionals in the Child Life Program support patients with soothing distractions during uncomfortable or frightening therapies. They use teaching aids to educate young patients about their condition and treatments, and they also involve them in play and games to help make their stay more pleasant.

“Our child life specialists play a helpful role along with us in supporting the patient’s needs,” Schaeffer states.

Rehabilitative services are available as well, including:

  • Animal-assisted therapy
  • Music therapy
  • Occupational therapy
  • Physical therapy

Animal-assisted therapy can help make recovery appealing for children. Facility dogs, like Kaia, Becky and Pilot at the Children’s Hospital, help to brighten the spirits of young patients. They also provide specific therapeutic benefits, such as encouraging mobility. Pilot assists with ambulation through dog walks.

“Instead of that uncomfortable first walk that the kids don’t want to do, we can make their focus be on helping walk the dog,” Schaeffer states.

Music therapy is a creative way to help children regain normal function and assist with activities of daily living following a long illness or surgery. Music therapists’ treatments work well to support physical and occupational therapy. Therapists play music and let the children join in with their instruments to make therapy more engaging. Sometimes music therapy is used to relax patients.

“They’ll bring in maracas for children to shake, so they can get back into grasping — but making it fun, so it’s not so medically driven,” Schaeffer explains. “They also come in and play very low-key songs just to help with calming the patient during procedures or times of rest.”

A Comfortable Setting

Because it’s essential for young CHD patients to have family members nearby, each patient room is private, with space for up to two caregivers to stay with each patient. The Cardiac Intensive Care Unit is located near the Neonatal Intensive Care Unit, making it easier for families to navigate the transition. Nurses from the units collaborate, sharing reports so information travels smoothly from the preoperative to the postoperative setting.

Multidisciplinary rounds are performed daily, and parents of patients are encouraged to attend. Since families may not understand some of the complex medical information discussed during rounds, staff members sit down with them and provide further clarification.

“We also ask that the families advocate and ask questions during those rounds so we can meet their needs,” Schaeffer adds.

Setting Patients and Their Families Up for Success

Throughout their stay, patients and their families receive the support and education they need to ensure a smooth transition from inpatient care to care at home. Education for patients and families begins immediately after surgery and continues through discharge.

“We have a TV network designed for each patient when they are admitted,” Schaeffer says. “We provide a selection of videos to each family that will help them understand their child’s care.”

Some educational videos pertain to cardiac conditions. Others address medicines and at-home management. Any new medications ordered will show up on the health screen for patients and families to see. Staff members also provide direct instruction, including cardiopulmonary resuscitation lessons.

“We instruct families on how to draw up the medications, administer the medications, what they’re for and who to call when they have questions,” Schaeffer says.

Hershey Hearts, a support group made up of former patient families or older CHD patients, may visit or leave care packages for those who underwent heart surgery.

Discharge planning is carefully mapped out to ensure a successful transition to care at home. The pharmacy is located in the hospital, so families go home with their first prescriptions in hand. This process is not only convenient for families, but also allows staff to verify that the caregivers understand medication instructions through a hands-on, teach-back method.

The care coordination team works with the cardiothoracic surgery team to ensure that all patients are set up with necessary specialist providers upon discharge, including those who do not live locally, according to Schaeffer.

“We all enjoy the shared bond with our patients and their families,” she says. “Often, we build strong relationships that last for many years.”

For more information on postoperative care for CHD at Penn State Health Children’s Hospital, visit