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, affiliated with the UofL School of Medicine, have the training and experience to treat heart complications caused by Marfan syndrome. Norton Children’s Heart Institute is the leading provider of pediatric heart care in Louisville and Southern Indiana.

The Society of Thoracic Surgeons has rated 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% 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 rated higher by the Society of Thoracic Surgeons than the Norton Children’s Heart Institute Pediatric Cardiothoracic Surgery Program.

  • Norton Children’s Hospital is 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 UofL School of Medicine, for advanced heart care.
  • Norton Children’s Heart Institute successfully performs more than 17,500 procedures a year.
  • The Society of Thoracic Surgeons rated Norton Children’s Heart Institute among the best in the region after studying years of our patients’ outcomes and our ability to treat a range of pediatric heart conditions, including the most severe.
  • Norton Children’s Heart Institute has satellite outpatient offices in Ashland, Bowling Green, Campbellsville, Elizabethtown, Frankfort, London, Madisonville, Murray, Owensboro, Paducah and Shepherdsville in Kentucky; as well as Corydon, Jasper, Madison and Scottsburg in Indiana; 28 tele-echocardiography locations in Kentucky and Southern Indiana; and six fetal echocardiography locations across Kentucky.
  • The American Board of Thoracic Surgery has awarded the cardiothoracic surgeons at Norton Children’s Hospital with subspecialty certification in congenital heart surgery.
  • The Jennifer Lawrence Cardiac Intensive Care Unit (CICU) is the largest dedicated CICU in Kentucky, equipped with 17 private rooms and the newest technology available for heart care.
  • 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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