A Case for Creating a Lifestyle Medicine Program for the Congenital Heart Condition Population

As technology, research and medicine continue to flourish, the lives they affect are also enhanced.  In the past, children born with congenital heart conditions did not always survive infancy let alone into adolescence and adulthood.  This has changed in the past 25 years and advances in diagnosis and surgical treatments have led to dramatic increases in survival for children with serious heart defects.  In the United States, about 1.4 million children and adults live with congenital heart conditions today.  Almost all are able to lead active, productive lives.[1]

As this population begins to enjoy the full spectrum of life, their risk factors for non-related congenital heart illnesses become similar to the rest of the populace particularly as they relate to overweight and obesity.  A retrospective cross-sectional study determined that the prevalence of overweight and obesity in children with heart disease were similar to their national peer groups without heart disease.  This study, published in 2012, concluded that future care of children with heart disease “should include general discussions about the risks for obesity.”[2]  This is especially important when recognizing that overweight and obesity are associated with chronic illnesses such as cardiovascular disease, stroke, diabetes, osteoporosis, sleep apnea, neurological diseases and many others.  It is now well know that inflammation and blood sugar dysregulation are both common factors underlying these chronic disease processes.

Unlike a majority of the rest of the populace, the congenital heart condition group has less reserve and tolerance for these diseases.  Their risk of serious complications and death can be assumed to be higher than the typical person without a heart defect when their bodies are also stressed with higher inflammatory levels and abnormal glucose regulation.

The congenital heart condition population is in need of their own personalized lifestyle medicine recommendations including dietary interventions, exercise prescription, drug/alcohol/smoking warnings, stress modification techniques and optimal sleep supportive measures in order to ensure best outcomes as they move into more mature stages of life.

These lifestyle medicine recommendations should be focused on maintaining healthy weight, blood pressure, cholesterol levels, blood sugar regulation and inflammatory markers throughout the lifetime.

Specialized guidelines for these health markers in the congenital heart condition population do not currently exist.  Therefore, until which time customized markers are studied and created, it should be recommended that this group also strive to maintain the current standards as measured through laboratory parameters and physical examination such as:

  • hsCRP
  • Homocysteine
  • BMI
  • Waist/Hip ratio
  • Cholesterol measurements
  • Blood pressure
  • Fasting glucose
  • HgA1C

Methods to meet optimal standards for these parameters includes implementation of lifestyle modifications including an anti-inflammatory Mediterranean-style diet, individualized exercise program, stress modification techniques, proper sleep hygiene, smoking and illicit drug cessation, and moderate to no alcohol use.

In addition to moderating lifestyle changes for optimizing cardiovascular health outcomes, other factors have increasingly been noted to affect the congenital heart condition population.  This includes genetics and comorbid conditions such as ADD/ADHD, learning disabilities, social impairment, scoliosis, pulmonary issues including asthma as well as endocrinology and gastroenterology related concerns.[3]

An understanding of the “why” and “how” of these health conditions is important, however, more significant to the person and family affected, is the successful management of these comorbid conditions.

A program designed to address all congenital heart related risk factors and comorbidities which may be affected through lifestyle modifications is crucial as we enter into new territory with congenital heart condition patients surviving well into adulthood at much higher rates.

At an even more fundamental level, there is a need for families with newly diagnosed congenital heart children to learn the basics of medication administration, organization and storage safety, basic nutrition, adequate hydration, warning signs of cardiac distress, CPR, and First Aid training.  Although many centers are covering these basics, it would be prudent and effective to create a comprehensive program with multiple levels of lifestyle care.  The program would be organized around optimizing overall health and longevity for this population.  The material and training should be structured in a hierarchy of complexity and families and individuals should be instructed in each step as appropriate and necessary.

Such a program would require the collaboration of an integrative group of physicians and providers.  A well-planned, multi-disciplined and research anchored program implemented in a step-wise fashion might resemble the following:

Step 1:  Basics of congenital heart care

  1. Medications – uses, side effects, interactions, storage, administration, organizing and timing of doses.
  2. Child Care/Daycare basics – at home and out-of-home care.
    1. First Aid
    2. CPR
    3. Warning Signs and steps to follow
    4. Healthcare basics
      1. Nutrition
      2. Hydration
      3. Sleep
      4. Smoke/drugs/alcohol use in and around the home and child
      5. Family Support
        1. Resources
        2. Support Groups
        3. Emotional/mental/financial impact and resources

Step 2:  Lifestyle Medicine for the Growing Heart – Program for the growing child and adolescent

  1. Nutrition
  2. Exercise
  3. Sleep
  4. Stress
  5. Emotional/Mental impact, support and resources
  6. Cardiology follow up in the adolescent/adult
  7. School impact
  8. Relationships among peers and family – support and resources

Step 3:  Lifestyle Medicine for Life

  1. Addressing comorbid conditions including:
    1. ADD/ADHD
    2. Asthma
    3. Eating disorders
    4. Obesity/Overweight
    5. Scoliosis/Orthopedic/Bone health
    6. Gastroenterology-related conditions
    7. Endocrinology-related conditions
    8. Fertility
    9. Methods of addressing these issues
      1. Focusing on lifestyle related modalities that would positively impact these areas
      2. Finding appropriate referrals and resources for patients and families
      3. Educating other providers on the relationship of these disorders and congenital heart conditions.
      4. Family and patient support

Step 4: 

Dissemination and growth:  Increasing visibility and awareness of such a program to centers, universities and public/private health centers across the nation.

[1] March of Dimes – Heart Defects.  http://www.marchofdimes.com/baby/birthdefects_congenitalheart.html

[2] Shustak RJ, McGuire SB, October TW, Phoon CK, Chun AJ. Prevalence of obesity among patients with congenital and acquired heart disease. Pediatr Cardiol; 2012 Jan;33(1):8-14.


[3] Massin MM, Astadicko I, Dess H.  Noncardiac comorbidities of congenital heart disease in children. Acta Paediatr; 2007 May;96(5):753-5.

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