Children with single-ventricle heart disease are typically treated with three-stage surgeries early in life: the Norwood, the Glenn, and the Fontan. These surgeries do not correct the heart problem, but make the conditions more manageable so your child is able to grow and lead a relatively normal life. Because of this, there will continue to be lifelong medical concerns requiring specialized treatment throughout adulthood.
There are many varieties of congenital heart disease that lead to a single functioning ventricle: There may be a missing heart valve, a small or missing pumping chamber (as with hypoplastic left heart syndrome or hypoplastic right heart syndrome), or a form of congenital heart disease in which the heart cannot be divided into a right and left side. Regardless of the reason, once the Fontan procedure is performed, children with single-ventricle heart disease have similar lifelong medical needs.
There are long-term consequences of having a Fontan procedure that are not preventable, but may be manageable if caught early enough. Some of these consequences include:
- Abnormal bone health
- Delayed growth and puberty
- Learning issues
- Liver dysfunction
- Protein-losing enteropathy (PLE)
- Plastic bronchitis (a severe respiratory issue)
Working with a team of pediatric specialists early can aid in detecting and managing many of these consequences, helping your child to continue to thrive after the Fontan procedure.
On your first visit, you and your child will meet with a variety of pediatric specialists individually to tailor a care program specific to your child’s needs. All of our specialists are located on-site, for the convenience of meeting with the team on the same day in the same place.
The Fontan Clinic at UI Stead Family Children’s Hospital does not take the place of your child’s primary cardiologist, but offers a cardiac care that complements the care already received. The clinic is offered once each month and provides specialized care in seven pediatric areas:
- Continuity of Care
Our team will obtain blood tests, X-rays, and ultrasounds at planned intervals, in addition to routine cardiac tests, such as an electrocardiogram (EKG), echocardiogram (echo), Holter monitor, and six-minute walk test. If the team identifies other services that could be of benefit to your child, additional referrals will be made.
Subsequent visits will occur annually and include the same specialists. If there are new concerns during the interim, your child may need to be seen more frequently.
Our Care Team
Continuity of Care Coordinator:
- Lindsay Blaha, RN, BSN, CPN
- Ashley Kimball MS, RCEP
- Courtney Adam MS, CCEP