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Marfan Syndrome Program

The Marfan Syndrome Program at the Children’s Heart Center specializes in the diagnosis and treatment of cardiovascular conditions in infants, children and teens with Marfan syndrome.

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Sometimes blood vessels can be too large, too small or twisted. The Aorta and Vascular Program at the Children's Healthcare of Atlanta Heart Center follows children and young adults up to age 21 with blood vessel diseases. The program offers close monitoring, medical management, educational support and surgical intervention, if necessary. We help facilitate multidisciplinary coordination of care with genetics, ophthalmology, orthopedics and pulmonary physicians.

What aortic and vascular conditions do we treat?

Our program provides a complete range of services and offers expertise to evaluate and treat the spectrum of aortic and vascular conditions, including:

  • Alagille syndrome
  • Aorta and vascular conditions
  • Aortic aneurysm
  • Aortic dissection
  • Aortic ectasia
  • Arterial tortuosity syndrome
  • Bicuspid aortic valve (BAV)
  • Dilated aortic root or aorta
  • Ehlers-Danlos syndrome (EDS)
  • Enlarged or dilated vessels
  • Familial aortic aneurysms
  • Loeys-Dietz syndrome
  • Marfan syndrome
  • Noonan syndrome
  • Stickler syndrome
  • Tuberous sclerosis
  • Turner syndrome
  • Vascular Ehlers-Danlos syndrome (vEDS)
  • Williams syndrome

Many of the conditions treated in the Aorta and Vascular Program are heritable, meaning that they can be passed on from parent to child. The program includes two certified genetic counselors who can determine if screening of parents or siblings is warranted and can facilitate genetic testing if needed. If a patient has a heritable aortic or vascular condition, he or she may be at risk to pass on the condition to future children. Working with a genetic counselor helps families understand the treatment options, risks and implications of a heritable aortic condition.

What to expect at the Aorta and Vascular Program

Many of these conditions are exceedingly rare, and families may have already encountered providers who were not familiar with the disorders, driving them to do their own research. When they come to the Aorta and Vascular Program clinic, families are often relieved to meet clinicians who can answer their questions and speak to their concerns. We partner closely with families so that we can provide the best possible care, management and outcomes for their child's specific needs. Because many of these conditions are complex, appointment times last longer to allow families to get their questions answered and determine if there is a need to involve other subspecialists.

At the Heart Center, we have a specialized team dedicated to minimizing the impact of aortic and vascular conditions on the long-term health of our patients. Our expertise helps ensure that appropriate testing and treatments are provided. With proper care and surveillance, many patients will not need to have surgery or other vascular interventions during childhood.

If your child does need surgery, our Heart Center team is committed to providing the best possible outcome. As one of the highest volume congenital heart surgery programs in the country, our surgeons and post-operative care team in the cardiac intensive care unit (CICU) have the experience and resources to support your child through their surgery and recovery. 

Our team is here to answer any questions you may have. Please email Glen Iannucci, MD, for questions and more information about the Aorta and Vascular Program. 

Aortic surgery volumes and outcomes

What does long-term care look like?

Relationships can be long-lasting at the clinic, since some aortic and vascular disorders can be detected at birth and our team follows children until they turn 21. When patients age out of our program, we help transition them to adult providers who can treat their particular issues. To stay informed of the most current treatment recommendations, our team collaborates with other physicians who care for patients with these rare disorders.

The physicians, nurse practitioners and genetic counselors in our program have been actively involved in the aortic disease medical community for the past 20 years and are dedicated to helping families receive the best care for their children with these aortic and vascular conditions.

Demo, E., et al. Genetics and Precision Medicine: Heritable Thoracic Aortic Disease. Med Clin North Am. 2019 Nov;103(6):1005-1019

Iannucci, G., et al. A Novel Anisotropic Failure Criterion with Dispersed Fiber Orientations for Aortic Tissues. J Biomech Eng. 2020 Aug 7

Iannucci, G., et al. Bicuspid Aortic Valve and Sports Clearance. American Journal of Cardiology. 2021. Feb 19

Iannucci, G., et al. Biomechanical properties of the thoracic aorta in Marfan patients. Ann Cardiothorac Surg. 2017 Nov;6(6):610-624

Iannucci, G., et al. Identification of in vivo nonlinear anisotropic mechanical properties of ascending thoracic aortic aneurysm from patient-specific CT scans. Sci Rep. 2019 Sep 10;9(1):12983 

Sallee, D, Iannucci, G., et al. Clinical history and management recommendations of the smooth muscle dysfunction syndrome due to ACTA2 arginine 179 alterations. Genet Med. 2018 Oct;20(10):1206-1215

Sallee, D., et al. Do HCN4 Variants Predispose to Thoracic Aortic Aneurysms and Dissections? Circ Genom Precis Med. 2019 Dec;12(12):e002626 

Sallee, D., et al. Severe aortopathy due to fibulin-4 deficiency: molecular insights, surgical strategy, and a review of the literature. Eur J Pediatr. 2014 May;173(5):671-5

Wechsler, S., et al. Atenolol versus Losartan in children and young adults with Marfan's syndrome. N Engl J Med. 2014 Nov 27;371(22):2061-71

Wechsler, S., et al. Frequency of Ventricular Arrhythmias and Other Rhythm Abnormalities in Children and Young Adults With the Marfan Syndrome. Am J Cardiol. 2018 Oct 15;122(8):1429-1436

Wechsler, S., et al. Predictors of Rapid Aortic Root Dilation and Referral for Aortic Surgery in Marfan Syndrome. Pediatr Cardiol. 2018 Oct;39(7):1453-1461

Two heart surgeries later, Hampton is thriving

When Hampton was a toddler, doctors discovered his health conditions had something in common: his heart. After two surgeries, he’s back to being a kid.

Read his story

Arthur M. Blank Hospital

With the opening of Arthur M. Blank Hospital, clinical services at Egleston Hospital, the Emory Children’s Center and the Aflac Cancer and Blood Disorders Center moved to the new hospital.

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