Single ventricle congenital heart disease (SVHD) patients and families face more than a medically complex diagnosis. In a recent survey from the Fontan Clinic at Phoenix Children’s, over 100 parents and caregivers shared social, economic and psychological impacts detailed in a poster abstract presented at the American Academy of Pediatrics National Conference. 

For example, over half of parents reported they decided to change jobs or work hours, or quit working altogether, due to their child’s diagnosis.

“The research emphasized that success for individuals with a Fontan circulation is measured not only by longevity but also by their ability to thrive physically, emotionally, socially and financially,” says Naim Duran, MD, a  pediatric cardiology fellow at Phoenix Children’s. “By highlighting the daily realities patients and families face, survey findings encourage healthcare providers, researchers and advocates to consider quality of life as a critical outcome and to develop more comprehensive, family-centered approaches to care.”

The Shift from Survival to Success

The Fontan Clinic at Phoenix Children’s is the only pediatric clinic in Arizona to provide comprehensive care for patients with SVHD. Since 2022, the program has expanded to a full-day clinic each month, with over 120 consultations per year. Following a multidisciplinary approach, the clinic now includes:

• Hepatology
• Nephrology
• Nutrition
• Psychology
• Pulmonology
• Social work
• Exercise Physiology

Many similar programs focus on how to care for a “failing Fontan,” meaning patients whose circulation becomes so dysfunctional, they require life-saving treatments or transplants. The team at Phoenix Children’s has shifted its focus, instead, to creating successful circulation proactively.

“Our goal is to determine: What can we do to give these kids and families a better quality of life?” says Deepti Bhat, MD, medical director of the Fontan Clinic. “What can we do by screening early? What can we do to give them good physical and mental health?”

As part of this effort, Dr. Bhat and her team wanted to engage more families. They started a registry and in 2024 joined the Fontan Network, collaborating with researchers at other institutions. One aspect they learned was missing from their program was a parent advisory group.

“A lot of times, these families just need hope,” says Dr. Bhat. “They just need to know that if things don’t go well with their child, they have a community of people who feel what they’ve gone through and can support them.”

One of the Largest Surveys of SVHD Parents

To engage even more with families, the Fontan team developed a caregiver survey to evaluate the impact of SVHD on ethnically and geographically diverse families.

Dr. Bhat and her team worked hard to increase the response rate for this survey. She notes that reaching this many single-ventricle families in a state like Arizona, with remote, rural areas and a large, diverse population, was not simple. The team initially distributed the survey by email, but fewer than 1% of recipients completed it – an early signal of the very access barriers the survey was designed to uncover. After identifying obstacles like unreliable internet access and concerns about anonymity, Dr. Bhat decided to switch to paper surveys, which were distributed during routine clinic visits. As a result, more than 96% of families completed it, helping make this one of the largest survey-based studies of SVHD caregivers to date.

Most respondents were between 40-49 years old, and about half identified as Hispanic.

The main areas of impact respondents identified included:

• Finances: This condition had a major financial impact on families, especially related to employment.
• Travel: Remoteness of residence affected care. About 60% of respondents lived in rural or remote Arizona, with limited access to an ambulance, tertiary centers, specialist care or emergency services. Almost half of families lived more than an hour away from the Phoenix Children’s Hospital – Thomas Campus.
• Mental health: The condition negatively affected the mental health of patients and their caregivers. About half of parents and one-third of siblings reported mental health problems. Nearly 60% reported that their child was currently dealing with anxiety, depression or social isolation.

Families highlighted the real-world challenges they face but did not expect – from navigating complex, lifelong care to accessing specialized services, and managing emotional and financial burdens.

The Need for More Support & Education at Diagnosis

The team at Phoenix Children’s presented preliminary survey findings at the 2025 American Academy of Pediatrics National Conference, bringing the lived experiences of Fontan families to a national audience alongside clinical and research perspectives. Additionally, the team deduced:

• Parental counseling should go beyond clinical outcomes to include mental health considerations, financial and logistical challenges at the time of diagnosis, so parents can make informed decisions about their child’s medical care.
• Families need better support, including:
• Caregiver education and resources
• Financial aid
• Mental health services
• Transportation assistance
• Multidisciplinary clinics are beneficial in providing coordinated, holistic care for patients and families.

A Lasting Impact for Fontan Families

Partly inspired by this study’s findings, Dr. Duran attended the AAP advocacy conference at the United States Capitol to develop a Standardized Financial Screening and Counseling Toolkit for Pediatricians Caring for Children with Chronic Medical Illnesses. On behalf of the Fontan team, Dr. Duran received the AAP’s 2025 Roberta Williams Advocacy Award for this work, which included registration to the conference.  

“This research was not only informative but actionable,” says Dr. Duran. “Survey results provided evidence that we could translate into a practical resource designed to address a real and unmet need, not only for SVHD families but families of children with any special healthcare needs.”

The Fontan Clinic at Phoenix Children’s continues to find more ways to make care family-centered, starting with education at the time of diagnosis. Care teams are explaining the costs of medical care, effects of caregiver burnout, potential for learning and behavioral issues as a child gets older, and more. The program is also expanding its psychology services and building more opportunities for families to connect with one another.

 “Ultimately, I hope these findings continue to inform research” says Dr. Bhat, “resulting in meaningful supports and interventions that improve the lives of those living with a Fontan circulation and their families for years to come.”  

Refer a Patient or Request a Consult

The Fontan Clinic at Phoenix Children’s provides comprehensive, multidisciplinary care for children and adolescents with single ventricle congenital heart disease and Fontan circulation – including cardiology, hepatology, nephrology, nutrition, psychology, pulmonology and social work. To refer a patient or request a consultation, call 602-933-KIDS (5437) or submit a referral online.