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Adult Congenital Heart Disease Specialty Clinic

Providing comprehensive & expert care for adults living with congenital heart anomalies

Congenital Heart Anomalies: Living to Adulthood
As a result of the surgical and medical advances in the past 20 years, children born with congenital heart disease are living longer and reaching adulthood more frequently than ever before. This contributes to an adult patient population needing specialized care and services that may not be recognized by or available through some traditional heart disease treatment programs.

The Adult Congenital Heart Disease Specialty Clinic at Saint Louis University offers a comprehensive, multidisciplinary program that addresses the medical and psychosocial needs of adult patients with congenital heart problems who:

 - Have never undergone surgery
 - Have been treated through corrective surgery but have residual
   problems
 - Have had palliative surgery and may or may not require further
   intervention
- Are awaiting heart transplant
 - Are inoperable
 - Patients referred to the clinic may or may not have been previously
   diagnosed. Some referrals may have less severe symptoms or
   symptoms that were overlooked during surgery.

Focusing on the Whole Person
The multidisciplinary program offered by the Adult Congenital Heart Disease Specialty Clinic is designed for patients who have reached physical and psychological maturity, usually those in their mid- to late teens and older. Our team includes specialists in cardiology, hematology and nephrology in addition to psychologists and social workers.

Adult patients with congenital heart disease may continue to receive treatment from pediatricians. However, adult patients' unique needs may be beyond the scope of general practice. In addition to in-depth knowledge of congenital heart disease and its associated complications, specialists caring for this patient population must be skilled in:
 - Assessing patients' physical abilities and limitations as related to
   work, recreation and ability to have a family.
 - Determining patients' intellectual capacities and their prospects
   for higher education and employment.
 - Supporting patients' integration into adult peer groups and family
   living.
- The comprehensive care provided by this team may help patients to
   lead active, fulfilling lives for their particular diagnosis. The clinic's
   services include:

Medical care
 - Comprehensive review of past diagnosis, testing and treatment
 - Evaluation of physical capabilities through testing modalities such
   as echocardiography, magnetic resonance imaging (MRI) and
   computerized axial tomography (CAT) scans.
 - Treatment of congenital abnormalities of other organ systems and
   acquired disease brought about by the strain of a chronic cardiac
   condition.
 - Medication management, including those needed for dental or
   other invasive procedures.
- Monitoring of high-risk pregnancies.
 - Physical rehabilitation and exercise training. 

Support services
 - Psychosocial support for patients and families.
 - Determination of employability.
 - Assistance with applications for disability benefits.
 - Arrangement for nursing care. 

An Overview of Congenital Heart Disease and Its Outcomes
Common defects in which survival to adulthood is expected:
 
- Bicuspid aortic valve
 - Coarctation of the aorta
 - Pulmonary valve stenosis
 - Ostium secundum atrial septal defect
 - Patient ductus arteriosus

Uncommon defects in which survival to adulthood is expected:
 
- Situs inversus with dextrocardia
 - Situs solitus with dextrocardia
 - Congenital heart block
 - Uncomplicated congenitally corrected transposition of the great
   arteries
- Congenital mitral regurgitation
 - Ebstein's anomaly
 - Congenital pulmonary regurgitation
 - Lutembacher's syndrome
 - Aneurysm of the sinus of Valsalva
 - Coronary artery fistulas
 - Congenital pulmonary arteriovenous fistulas

Common defects in which adult survival is exceptional:
 
- Ventricular septal defect (large)
 - Tetralogy of Fallot  

Referrals and Consultation
Referrals to the Adult Congenital Heart Disease Specialty Clinic are welcomed from:
 
- Pediatric cardiologists
 - Pediatricians
 - Internists
 - Family practitioners
 - Surgeons
 - Cardiologists
 - Self-referral

Common reasons for patient consultations with our clinic are concerns about prognosis, pregnancy and hereditary risk. Patients want to have a diagnosis confirmed or are seeking information about new treatment options.

If you would like to find out more information about adult congenital heart diseases and services available through our Clinic, please call toll-free 1-800-268-5880.

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