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The Single Ventricle Program at the Heart Institute at UPMC Children’s Hospital of Pittsburgh was launched in March 2024 to better support infants with single ventricle congenital heart defects during the high-risk interstage period. This critical period, spanning the time between a newborn's first and second heart surgeries, carries considerable medical and developmental risks. A cornerstone of the program's success has been the leadership and day-to-day coordination provided by two advanced practice providers (APPs), Stacey Green, PA-C, and Elizabeth Pratt, CRNP.
The program was co-developed by pediatric cardiologists Lizabeth Lanford, MD, and Evonne Morell, DO, whose leadership and vision, alongside the clinical expertise of Ms. Green and Ms. Pratt, have shaped a comprehensive and family-centered model of care. Together, the multidisciplinary team has created a new standard of support for this medically complex patient population.
Preparing Families to Go Home
Education and preparation begin early — often while infants are still in the cardiac ICU.
"We try to meet families as soon as it's appropriate after surgery to begin introducing ourselves and the idea of home discharge," says Ms. Green. "It gives them time to get to know us and to understand the long-term goals of the program."
Once patients transition from the ICU to the acute care unit, formal caregiver education begins. Ms. Green and Ms. Pratt co-developed a discharge checklist used to guide this process. The checklist is structured around key physiologic systems — cardiovascular, respiratory, and gastrointestinal — and introduces families to equipment and protocols they will use at home." We teach them how to use a pulse oximeter, how to monitor their baby's heart rate and oxygen saturation, and how to interpret those numbers in the context of their child’s physiology," says Ms. Pratt. "For most of these patients, oxygen levels are intentionally lower than typical. So, parents need to know what is 'normal' for their child."
Feeding is another major focus. A large percentage of infants with single ventricle physiology are discharged with nasogastric (NG) tubes. Parents learn to place and manage these tubes, administer medications through them, and deliver gravity feeds.
"Our hope is that a baby can learn to feed solely by mouth. Previously they left with some degree of tube dependence but with discharge in the Interstage we have been able to get more kids feeding by mouth, which is really exciting,” says Ms. Pratt.
Multidisciplinary Coordination and Simulation
The APP team works closely with bedside nurses, therapists, and other clinicians throughout the discharge preparation phase.
"We do a lot of troubleshooting scenarios with families: 'If this happens, what would you do?'" says Ms. Green. "We go over red flag symptoms constantly — weight loss, emesis, abnormal saturations, signs of dehydration."
One of the final steps before discharge is a required 24-hour "live-in" session at the hospital. During this period, families independently manage all aspects of their child's care while APPs and nurses observe and provide backup as needed.
"It's not a test, but a confidence-building experience," says Ms. Pratt. "It gives parents a chance to prove to themselves that they can do this."
Post-Discharge Monitoring and Communication
The APPs also manage the transition to outpatient care, including establishing a communication plan with primary care providers and local emergency services. Each patient’s address is flagged in EMS databases with a "premise hazard" note and targeted clinical guidance.
Internally, the team maintains a centralized action management plan in the electronic medical record, updated weekly, that contains comprehensive information on the patient's medications, feeding schedule, oxygen goals, and care protocols.
Families are equipped with a physical binder that mirrors the digital record, containing all essential instructions, contact information, and emergency guidance.
"We rely on families to be our partners in this," says Ms. Green. "They carry the binder with them everywhere."
Currently, APPs follow up weekly with each family in dedicated outpatient clinic, alternating with cardiologists. In between visits, daily communication is a common occurrence.
"We're on call from 7 a.m. to 5 p.m., and we're usually talking to most families at least once a day," says Ms. Green.
Clinical Impact and Family Empowerment
The program has had a measurable impact on clinical outcomes and quality of life. Families report a greater sense of independence and comfort caring for their children. Clinically, the APPs have seen improvements in feeding milestones, reduced need for sedation, and earlier removal of NG tubes than was typical in prior care models.
"We've had patients who avoided surgical G-tubes altogether because they were able to progress with oral feeding at home," says Ms. Pratt. "Being with family, away from the stressors of the hospital, makes a big difference."
Increased developmental engagement at home — tummy time, exposure to varied stimuli, interaction with siblings — also contributes to milestone achievement and parental/child bonding.
"They get to be babies," says Ms. Green. "And parents get to be parents, which is something that being in the hospital 24/7 can unintentionally take away."
Future Program Enhancements
Looking ahead, both APPs have identified areas for potential expansion. Ms. Green hopes to establish a formal parent support network, matching new families with those who have successfully navigated the program.
"These parents need to talk to someone who's lived it. That kind of support is different than anything we can offer as clinicians," says Ms. Green.
Both clinicians are also advocating for enhanced remote monitoring.
"We would like to move toward real-time electronic monitoring through the CHAMP program or a similar platform," says Ms. Pratt. "Currently, we're depending on families to track and report daily vitals like weight and oxygen saturation. That works, but real-time, remotely gathered data would provide a great deal of clinical utility."
Respite care is another area under consideration. As Ms. Green explains, "Families are on call 24/7, and some have minimal or no external support network to lean on when they need a break. Even just a few hours of trained nursing relief could provide a much-needed rest."
Sustaining a High-Touch, High-Impact Model
The APPs’ work in the Single Ventricle Program at the Heart Institute reflects the central role of advanced practice providers in complex pediatric cardiology care. Through clinical oversight, family education, real-time support, and systems coordination, Ms. Green and Ms. Pratt have helped build a model that supports safe discharge, improves outcomes, and empowers families to care confidently for their children at home.
"Our goal is to help them be a family," says Ms. Green. "This program is about giving families their lives back, even in the face of an incredibly challenging diagnosis."
Adds Ms. Pratt, "It is intense, but it is also incredibly rewarding. Watching these families grow into their role is one of the most fulfilling parts of what we do."