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

What is Marfan syndrome? What are the symptoms and how is it treated?

Marfan syndrome is a connective tissue disorder that affects about 1 in 5,000 people. It affects boys and girls equally and is not known to affect any ethnicity more than others. It can be inherited and passed down through families, but about half of the cases occur as a spontaneous mutation in the FBN1 gene, which encodes the connective tissue protein fibrillin. Developments associated with Marfan syndrome are heart conditions such as aortic dilation and mitral valve prolapse; eye conditions such as severe nearsightedness or lens dislocation; and skeletal developments such as tall stature, long fingers, scoliosis and changes in the shape of the chest wall.

What are long-term expectations for patients with Marfan syndrome?

Thanks to medical breakthroughs and technological advancements, with aggressive medical and surgical care, children with Marfan syndrome are expected to lead normal lives.

What kind of treatment and services do the Marfan Program provide?

Through the Marfan Syndrome Program within our Aorta and Vascular Program, we perform full cardiovascular evaluations and physical exams. Genetic counselors are available to assist in obtaining detailed family histories and facilitate genetic testing, if warranted. Additionally, given our experience with Marfan syndrome patients, we can assist with referrals to other specialists familiar with the complications seen these patients when needed.

Why should patient families come to our Marfan Syndrome Program?

Since its inception in 2012, the Aorta and Vascular Program at the Children’s Heart Center has managed more than 5,000 patient visits. Our dedicated team of physicians, nurse practitioners and genetic counselors are actively involved in national and international collaboratives, enabling us to provide high-quality, specialized care to each patient we see in our Marfan Syndrome Program.

What makes our Marfan Syndrome Program different from others?

Our Aorta and Vascular Program is the largest pediatric program of its kind in the Southeast and has been recognized by the Marfan Foundation as an established center since 2012. We have had more than 5,000 patient encounters during this time period. Our physician team has provided care for patients with Marfan syndrome and other connective tissue disorders for more than 50 years combined. 

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