Congenital Heart Disease
Fontan Clinic
Center for Heart Care

Single ventricle congenital heart disease (SVHD) is one of the most medically complex heart conditions a baby can have at birth. Instead of two heart chambers, they only have one.

“Decades ago, there was no way to treat a child with this type of congenital heart disease,” says Deepti Bhat, MD, medical director of the Fontan Clinic, part of the Center for Heart Care at Phoenix Children’s. The Fontan procedure is the third and final surgery in the treatment of SVHD. “Now, with complex surgical techniques and other medical advancements, many of these infants are living into adulthood and beyond.”

Despite increasing survival rates of infants with SVHD, families still carry a heavy burden – both financially and mentally. Research has shown that parents of children with congenital heart disease can have a high incidence of mental illness. Many also show signs of trauma, depression, anxiety or severe psychological distress.

To learn more about these lesser-known barriers to care and how they impact families, Dr. Bhat and others at Phoenix Children’s developed a family survey.

Survey Responses from SVHD Parents

Over 100 families responded to the SVHD survey, making it one of the largest surveys of its kind to look at the impact of the disease. It’s also one of the largest studies representing a diverse range of ethnicities and families living in rural or remote regions.

Findings, overall, show that a SVHD diagnosis has a big impact on families. Most parents weren’t prepared for the socio-economic or psychological effects.

Financial Impact

SVHD affects a family’s finances. Roughly 45% of parents reported they had to change jobs, modify working hours or quit their job because of their child’s diagnosis.

“This is a significant finding that shows how the diagnosis goes beyond the clinical aspect,” says Naim Duran, MD, pediatric cardiology fellow at Phoenix Children’s. “It begins to affect not only the patient but the parent and their ability to continue working.”

Most families didn’t feel prepared for how the disease would affect their finances. When asked if their child’s diagnosis has affected their total income, 45% reported yes, and 73% worry their child may not be able to take care of medical expenses in the future.

Location & Access to Care

Of families who responded to the survey, approximately one-third live in remote parts of Arizona. They have limited access to emergency services, specialty care and ambulance services. Almost half live more than an hour away from Phoenix Children’s Hospital – Thomas Campus, which adds another barrier to getting care.

Mental Health Effects

About half of parents and one-third of siblings of children with SVHD reported mental health symptoms. In addition, most respondents felt their child’s physical and mental health affected their quality of life.

Nearly 60% of parents reported their child currently suffers from anxiety, depression or social isolation.

Few families were aware that mental health resources are available for them or any of their children.

How We’re Transforming Fontan Care

As our Fontan Clinic continues to evolve, it is becoming more family-centered. Based on the survey results, we are prioritizing the following:

  • Improve parental counseling so that families not only talk about clinical care and outcomes with their doctor but also mental, financial and logistical struggles
  • Discuss possible challenges during diagnosis to help parents make more informed decisions about their child’s care
  • Offer more support, when possible, for financial aid, mental health services, transportation and caregiver education

“The survey brought attention to the daily realities parents and families face,” says Dr. Duran, who presented findings at the 2025 American Academy of Pediatrics National Conference. “This work encourages healthcare providers, researchers and advocates to consider quality of life as a critical outcome and develop more comprehensive, family-centered approaches to care.”

About the Fontan Clinic

The Fontan Clinic at Phoenix Children’s is one of a few programs in Arizona to provide complete care for patients with SVHD and their families. Since 2022, we’ve seen significant growth.

Today, we offer a full-day clinic each month, with providers from multiple specialties, including:

We meet with over 120 patients each year. Through the Fontan Network, our experts work with researchers at other institutions. And through our Patient Family Advisory Councils, parents and families engage with our teams and with one another.

“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.”

If your family is navigating the financial, emotional or logistical challenges of an SVHD diagnosis, you’re not alone. Learn more about the comprehensive, family-centered care available through the Fontan Clinic at Phoenix Children’s – including mental health support, financial guidance and our Patient Family Advisory Councils.