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.

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

The Adult Congenital Heart Association has recognized Norton Children's Heart Institute for its expertise treating adult congenital heart disease.

  • 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.
  • The American Board of Thoracic Surgery has certified our cardiothoracic surgeons in congenital heart surgery.
  • The Adult Congenital Heart Association has accredited Norton Children’s Heart Institute’s Adult Congenital Heart Program as the only comprehensive care center in Kentucky and Indiana treating adults born with a heart defect.
  • More than 5,000 children a year visit Norton Children’s Heart Institute for advanced heart care.
  • Norton Children’s Heart Institute has offices across Kentucky and Southern Indiana to bring quality pediatric heart care closer to home.
  • The Jennifer Lawrence Cardiac Intensive Care Unit (CICU) at Norton Children’s Hospital is the largest dedicated CICU in Kentucky, equipped with 17 private rooms and the newest technology available for heart care.
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Norton Children’s Heart Institute earns accreditation from the Adult Congenital Heart Association

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