- Accepting your feelings
- Talking about your feelings
- Telling your family and friends
- Building your support team
- Dealing with stress
- Understanding the cardiovascular system
- Understanding congenital heart disease
- Understanding congestive heart failure
- Understanding cyanosis
- Understanding medications
- Finding trustworthy online resources
- Bloodwork
- Chest X-ray
- CT scan
- Echocardiogram
- Electrocardiogram (ECG or EKG)
- Heart catheterization
- Magnetic resonance imaging (MRI)
- Oxygen saturation test
- Transesophageal echocardiogram (TEE)
The following resources were used to build this guide; the majority helped make the original Heart & Soul in 2004.
Ahmann, Elizabeth, Marie Richard Abraham, and Beverley H. Johnson. Changing the Concept of Families as Visitors: Supporting Family Presence and Participation. Bethesda, MD: Institute for Patient- and Family-Centered Care, 2003.
Allen, Hugh D., Howard P. Gutgesell, Edward B. Clark, and David J. Driscoll, eds. Moss and Adams’ Heart Disease in Infants, Children, and Adolescents: Including the Fetus and Young Adult, 6th ed., Vol. 1. Philadelphia: Lippincott Williams & Wilkins, 2001.
Bricker, J. Timothy. “Clinical Physiology of Right-to-Left Shunts.” In The Science and Practice of Pediatric Cardiology, 2nd ed., Vol. 2, edited by Arthur Garson, Jr., J. Timothy Bricker, David J. Fisher, and Steven R. Neish. Baltimore: Lippincott Williams & Wilkins, 1998.
Brook, Michael M. “Pediatric Bacterial Endocarditis: Treatment and Prophylaxis.” Pediatric Clinics of North America 46, no. 2. (April 1999): 275–287. doi.org/10.1016/S0031-3955(05)70118-8.
Cahill, Matthew, ed. Everything You Need to Know about Medical Treatments. Springhouse Everything You Need to Know Series 4. Springhouse, PA: Springhouse Publishing Company, 1996.
Cender, Loryle Marie. “The Experience of Caring for a Child with a Medically-Fragile Condition at Home: Perceptions of Parents.” Master’s thesis, University of British Columbia, 1995. hdl.handle.net/2429/3695.
Cook, Elizabeth H., and Sarah S. Higgins. “Congenital Heart Disease.” In Primary Care of the Child with a Chronic Condition, 3rd ed., by Patricia Ludder Jackson and Judith L. Vessey. St. Louis, MO: Mosby, 2000.
Curley, Martha A. Q., Janis Bloedel Smith, and Patricia A. Moloney-Harmon. Critical Care Nursing of Infants and Children. Philadelphia: W. B. Saunders Company, 1996.
Dajani, Adnan S., Kathryn A. Taubert, Walter Wilson, Ann F. Bolger, Arnold Bayer, Patricia Ferrieri, Michael H. Gewitz, et al. “Prevention of Bacterial Endocarditis: Recommendations by the American Heart Association.” JAMA 277, no. 22 (June 11, 1997): 1794–1801. doi.org/10.1001/jama.1997.03540460058033.
Davies, Linda, and Michelle Mann. Heart Children: A Practical Handbook for Parents of Babies and Children with Heart Conditions. 3rd ed. Auckland: Parent to Parent Family Resource Centre, 2000.
Dozois, Elizabeth, and Ralamy Kneeshaw. Heart Beats: A Handbook for Families and Children with Special Hearts. Draft. Calgary: Heart Beats Children’s Society of Calgary, 1999.
Durbach, Edna, Cynthia A. Stutzer, and BC Children’s Hospital. Children with Cancer: A Handbook for Families. Vancouver, BC: BC Children’s Hospital, 2002.
Durbach, Edna, Jaye Kerzner, and BC Children’s Hospital. Partners: Becoming a Partner on Your Child’s Health Care Team. Kit (Video, booklet). Vancouver, BC: BC Children’s Hospital, 2000.
Fowler, Vance G., and David T. Durack. “Infective Endocarditis.” Current Opinions in Cardiology 9, no. 3 (May 1994): 389–400. doi.org/10.1097/00001573-199405000-00018.
Jeppson, Elizabeth S., and Josie Thomas. Families as Advisors: A Training Guide for Collaboration. Bethesda, MD: Institute for Patient- and Family-Centered Care, 1997.
Kramer, Gerri Freid, and Shari Maurer. The Parent’s Guide to Children’s Congenital heart Defects: What They Are, How to Treat Them, How to Cope with Them. New York: Three Rivers Press, 2001.
Kronick-Mest, C. “Postpericardiotomy Syndrome: Etiology, Manifestations, and Interventions.” Heart & Lung: The Journal of Cardiopulmonary and Acute Care 18, no. 2 (Feb. 28, 1989): 192–198.
Leff, Patricia Taner, and Elaine H. Walizer. Building the Healing Partnership: Parents, Professionals, and Children with Chronic Illnesses and Disabilities. Cambridge, MA: Brookline Books, 1992.
Merriam-Webster’s Collegiate Dictionary. 10th ed. Springfield, MA: Merriam-Webster, Inc., 1993.
Neill, Catherine A., Edward B. Clark, and Carleen Clark. (1992). The Heart of a Child: What Families Need to Know about Heart Disorders in Children. Baltimore: Johns Hopkins University Press, 1992.
O’Brien, Patricia, and Patricia A. Smith. “Chronic Hypoxemia in Children with Cyanotic Heart Disease.” Critical Care Nursing Clinics of North America 6, no. 1 (March 1994): 215–226.
Prince, Simon E., and Burke A. Cunha. “Postpericardiotomy syndrome.” Heart & Lung: The Journal of Cardiopulmonary and Acute Care 26, no. 2 (March 1, 1997): 165–168. doi.org/10.1016/S0147-9563(97)90077-7.
Rempel, Gwen, and Laurie Cender. Knowing But Not Knowing: Finding Out about Your Baby’s Heart Problem before Your Baby Is Born. Revised by Jan Rooks. Vancouver, BC: BC Children’s Hospital, 2014.
Whaley, Lucille F., and Donna L. Wong. Whaley and Wong’s Nursing Care of Infants and Children. 6th ed. St. Louis, MO: Mosby, 1999.