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NHLBI Working Group on Obesity and Other Cardiovascular Risk Factors in Children with Congenital Heart Disease (CHD)

Executive Summary

May 11-12, 2009

An expert panel met on May 11-12, 2009 in Bethesda, Maryland to address knowledge gaps, challenges and opportunities related to research, policies and the clinical care of children born with congenital heart disease (CHD) who also have or are at risk for obesity and other cardiovascular risk factors. The impact of these risk factors on morbidity and mortality in children and adult survivors of CHD was also discussed. Recommendations to the NHLBI for future research directions converge with the NHLBI’s Strategic Goal #2, to improve understanding of disease and enable better prevention, diagnosis and treatment, and Goal #3, to promote translation of research into practice to improve public health and stimulate additional scientific discovery.


The relationship between childhood obesity and subsequent cardiovascular risk has been well-described. For many children with congenital heart defects (CHD), especially infants, the battle has traditionally been for them to gain enough weight to thrive. Pediatric cardiologists have been surprised, therefore, to find that children born with CHD are now becoming overweight and obese at rates similar to those of the general pediatric population. This raises the specter of adding all of the risk implicit in obesity to a group of children already at increased risk of adverse cardiovascular outcomes. The hearts of children with CHD are not only abnormally formed, but also, in many cases, have undergone multiple palliative surgical procedures with repeated episodes of ischemia-reperfusion injury. This abnormal myocardium may be perfused by coronary arteries that are not normal. Many infants with complex heart disease fail to thrive, and then experience inappropriately rapid catch-up growth after surgical repair. Finally, physicians, parents, and the children themselves impose exercise restrictions that may be unnecessary and even counterproductive. The little research that has been done in adults with CHD suggests that when cardiovascular risk factors are present, they are associated with coronary artery disease in about the same proportions as in other adults. Furthermore, coronary artery disease in adults with CHD has an adverse effect on ventricular performance in the absence of overt ischemia.

Significant knowledge gaps must be closed to adequately address the issues of obesity and CV risk factors in this high-risk group of children. The following themes emerged from the WG discussion as important for further discoveries and their application to improve the health of children with CHD:

  • Who is affected? What is the prevalence and impact of obesity, CV risk factors and non-cardiac morbidities in children with CHD?
  • How active can children with CHD be?
  • How should their nutritional status be assessed and monitored at all phases of their cardiac care?
  • What are the roles of the general pediatrician and the pediatric cardiologist in screening and counseling for obesity and related morbidities that might be especially concerning for children with CHD?
  • What is the effect of obesity and CV risk factors on functional health status, quality of life and neurodevelopment?
  • Which strategies or available resources are effective for the prevention and management of obesity and CV risk throughout the lifespan?
  • Which resources and collaborations are needed to stimulate research to improve lifelong cardiac health in the individual with CHD?
  • How can pathologic and clinical manifestations of atherosclerosis be identified in hearts previously and contemporaneously compromised by CHD?


The following recommendations were made to NHLBI by the Working Group:

  • Establish a collaborative process, with the Atherosclerosis, Hypertension and Obesity in the Young Committee and the Congenital Cardiac Defects Committee, both of the American Heart Association’s Council on Cardiovascular Diseases in the Young, to develop guidelines for the promotion of safe physical activity for children with CHD by lesion and to provide screening/counseling tools for healthcare providers. Since current practice may be too restrictive and may add to the health issue of obesity in this special population, this recommendation was viewed as a priority by the WG.
  • Support training of new specialists in preventive pediatric cardiology research through already established funding mechanisms (training and fellowship grants) and encourage clinical research through Clinical Skills Development Cores established within the NHLBI’s Pediatric Heart Network (PHN) and the new Childhood Obesity Prevention and Treatment Research Consortium.
  • Support interdisciplinary research specific to the CHD population to address the many unexplored scientific areas, including discovery of:
    • optimal biomarkers and measures of obesity (which measures would be more sensitive and specific than BMI),
    • the best outcomes to measure,
    • parental/healthcare provider perceptions of obesity, activity risk and tolerance,
    • the impact of traditional risk factors in CHD,
    • obesity and CV risk prevention and management strategies,
    • the impact of nutrition and early feeding behaviors,
    • new insights gained from CHD pathophysiological models to inform the treatment and prevention of adult diseases and morbidities (e.g., the observation that patients with cyanotic heart disease tend to have minimal atherosclerosis to direct research efforts evaluating anti-atherogenic mechanisms)
    • optimal levels for all CV risk factors in patients with CHD
  • Facilitate research in the CHD population along the life continuum through collaborations between existing NIH-supported Networks (especially the PHN and the Childhood Obesity Prevention and Treatment Research Consortium) and encourage utilization of the Clinical and Translational Science Award (CTSA) institutions/resources.
  • Establish platforms for existing registries and support new registries to merge the data from CHD patients to be used for future research in obesity and CV risk.

Publication Plans

The Working Group members will develop a meeting proceedings report for publication in an appropriate professional cardiovascular journal.

Participating Divisions

Representatives from NHLBI, the CDC, and NICHD participated in this Working Group.

Staff Contacts / E-mail

Victoria Pemberton, RNC, MS, CCRC, NHLBI, NIH

Jonathan Kaltman, MD, NHLBI, NIH

Working Group Members


  • Shari Barkin, MD, MSHS, Vanderbilt University
  • Steve Daniels, MD, PhD, University of Colorado
  • Brian McCrindle, MD, MPH, Hospital for Sick Children, Toronto


  • Sarah Barlow, MD, MPH, Baylor College of Medicine
  • Helen Binns, MD, MPH, Northwestern University
  • Meryl S. Cohen, MD, Children’s Hospital of Philadelphia
  • Christina Economos, PH.D., Tufts University
  • Myles Faith, PhD, University of Pennsylvania
  • Sam Gidding, MD, Nemours Cardiac Center
  • Caren Goldberg, MD, University of Michigan
  • Terry Huang, PhD, MPH, NICHD
  • Mike Landzberg, MD, Children’s Hospital Boston
  • Patricia Longmuir, M Sc, Hospital for Sick Children, Toronto
  • Albert P. Rocchini, MD, University of Michigan
  • Linda Van Horn, PhD, RD, Northwestern University

June 2009

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