Marfan Syndrome Treatment

Marfan syndrome is an inherited disorder that affects the connective tissue that holds the body’s organs and other tissues together. Marfan syndrome raises a child’s risk for serious complications, especially for the heart and blood vessels.

Complications affecting patients with Marfan syndrome include an enlarged aorta and abnormality of the aortic valve. If the aorta becomes large enough, it may tear or “dissect.” Dissection of the aorta is life threatening. Abnormalities of the aortic valve can cause the valve to leak, affecting the function of the heart.

Treatment for the condition can include medications, such as beta blockers, to ease the heart’s workload. In addition, your child’s pediatric cardiologist may recommend surgery to repair the aorta or heart valves. Your child’s doctor may plan the surgery, but in some cases, such as a dissection, it will be an emergency.

The board-certified and fellowship-trained cardiologists at Norton Children’s Heart Institute have the training and experience to treat heart complications caused by Marfan syndrome. Norton Children’s Heart Institute, affiliated with the University of Louisville, is the leading provider of pediatric heart care in Louisville and Southern Indiana.

The Society of Thoracic Surgeons has ranked Norton Children’s Heart Institute’s pediatric heart care among the best in the region. We have a network of remote diagnostic and treatment services in Kentucky and Southern Indiana.

Marfan syndrome symptoms in children

The specialists at Norton Children’s Heart Institute are skilled at diagnosing Marfan syndrome. They will use their experience and sophisticated tools to pinpoint your child’s condition. Tests can include electrocardiography, echocardiography, a complete eye exam, a computed tomography (CT) or magnetic resonance imaging (MRI) scan, and testing for the mutations in the FBN1 gene that can cause Marfan syndrome.

Symptoms of Marfan syndrome include:

  • Crowded teeth
  • Curved spine
  • Flat feet
  • Long arms, legs and fingers
  • Loose joints
  • Nearsightedness or other eye issues
  • Scars and poor healing of cuts
  • Tall, thin body

Marfan syndrome is a genetic disease, but that doesn’t mean that it gets passed along in every case. In about 75 percent of Marfan syndrome cases, the child has inherited the condition from a parent. In the remaining cases, Marfan syndrome is caused by new, spontaneous gene mutations.

Why choose Norton Children’s Heart Institute

No other congenital heart surgery program in Kentucky, Ohio or Southern Indiana is ranked higher by the Society of Thoracic Surgeons than the Norton Children’s Pediatric Cardiothoracic Surgery Program.

  • Norton Children’s Hospital has been a pioneer in pediatric cardiothoracic surgery, performing Kentucky’s first pediatric heart transplant in 1986 and becoming the second site in the United States to perform an infant heart transplant.
  • Our board-certified and fellowship-trained pediatric cardiovascular surgeons are leaders in the field as clinicians and researchers.
  • More than 5,000 children a year visit Norton Children’s Heart Institute, affiliated with the University of Louisville, for advanced heart care.
  • Norton Children’s Heart Institute successfully performs more than 17,500 procedures a year.
  • The Society of Thoracic Surgeons ranked Norton Children’s Heart Institute among the best in the region after studying years of our patients’ outcomes and our ability to handle a range of pediatric heart conditions, including the most severe.
  • Norton Children’s Heart Institute has satellite outpatient centers in Bowling Green, Frankfort, Owensboro and Paducah; 28 tele-echocardiography locations in Kentucky and Southern Indiana; and six fetal echocardiography locations across Kentucky.
  • The American Board of Thoracic Surgery has certified the cardiothoracic surgeons at Norton Children’s Hospital with subspecialty certification in congenital heart surgery.
  • The Jennifer Lawrence Cardiac Intensive Care Unit is under construction to give our patients the most advanced cardiac intensive care unit available.
  • Our multidisciplinary approach to pediatric heart surgery brings together our specialists in cardiothoracic surgery, cardiology, anesthesiology, cardiac critical care and other areas to create a complete care plan tailored for your child.
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Norton Children’s Heart Institute

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