By (Rose) Rosalie J. (Russo) Gleicher, DSW, LMSW, CRC
Congenital heart defects are the most common form of birth defect. Heart defects are three times more common than muscular dystrophy, five times more common than childhood cancer, and thirty times more common than cystic fibrosis. More infants die of heart defects than any other birth defect. Approximately one in every 100 to 120 babies is born with a congenital heart defect. Eight in 1,000 kids or about 25,000 children are born with a heart defect every year; yet others report that this number is closer to 30,000 babies to 40,000 babies. With today’s advances in medical technology and early diagnosis, most congenital heart defects can be corrected. There are about 800,000 children and one million adults in the United States who are survivors of congenital heart defects.
It is a structural abnormality in the heart due to a malformation in utero that is present at birth. The defect(s) involves the walls of the heart, and/or the valves of the heart, and/or arteries or veins near the heart. These abnormalities disrupt the normal flow of blood through the heart such that the blood flow slows down, and/or blood goes in the wrong direction/wrong place, and/or passage of blood is blocked completely.
Signs/Symptoms in INFANTS:
The Congenital Heart Information Network (CHIN) reports the following signs and symptoms in infants and Children. Please call your child’s doctor, if you child experiences any symptoms.
- Tires easily during feeding (i.e. falls asleep before feeding finishes)
- Sweating around the head, especially during feeding
- Fast breathing when at rest or sleeping
- Pale or bluish skin color (cyanosis)
- Poor weight gain
- Sleeps a lot–not playful or curious for any length of time
- Puffy face, hands, and/or feet
- Often irritable, difficult to console
Signs and symptoms in CHILDREN:
- Gets out of breath during play
- Difficulty “keeping up” with playmates
- Tires easily/sleeps a lot, change in color during active play or sports (looks pale or has bluish tint around mouth and nose)
- Frequent colds and respiratory illnesses
- Slow growth and weight gain/poor appetite
- Complains of chest pain and/or heart pounding
Causes of Congenital Heart Defects
Most children who have a congenital heart defect do NOT have a family history or any risk factors. It is thought to be an unknown random occurrence. Researchers continue to study the role of genetic and environmental factors.
Congenital heart defects are found in 40 percent of people with Down Syndrome and 20-40 percent of those with Turner’s Syndrome. Researchers have found links between some types of birth defects and the mother’s exposure to particular drugs, diseases, or chemicals during pregnancy. Researchers have also found that there is a higher risk of a congenital heart defect if two or more family members have a congenital heart defect. Discuss your child’s particular heart defect with your doctor or genetic counselor.
Treatment options vary and will depend on the specific situation because there are 35-40 different types of congenital heart problems. For example, some problems will need to be watched, some will need medication, and some will need surgery such as cardiac catherization or open-heart surgery. Please discuss treatment options with your doctor.
- Lots of research is being done about children who have experienced congenital heart surgery and risk for developmental delays.
- Recovery depends on the particular type of congenital heart defect, pre-operative status, operative, and post-operative complications.
- Those who have surgery may have physical and/or emotional scars to deal with
- All survivors of congenital heart defect surgery are at increased risk of additional heart problems as they age and need regular cardiac check-ups.
- Most survivors of congenital heart surgery will require antibiotic medications be taken before most dental procedures (ex. cleanings, extractions) to prevent an infection spread by the blood to the heart that is called “endocarditis.”
Please discuss your child’s particular condition with your doctor.
Diagnosis may happen at during pregnancy, at birth, or sometime later on. There are 35-40 different types of heart defects and different treatment options.
- Shock is usually among the initial feelings, i.e., “Is it really true?” The shock to parents is often greater when they have no family history of congenital heart defects, a routine prenatal sonogram that was normal, and was told she was having a “healthy” baby.
- Denial is usually among the initial feelings. There may be a feeling that the doctors are wrong.
- Guilt is a also common reaction. Did the parents contribute to this problem in any way?
- Shame may be felt about whom to tell or not tell about the child’s medical history.
- Confusion about treatment options and/or what the future will be.
- Parents may be overwhelmed by new medical vocabulary and large number of medical staff.
- Parents may experience a sense of hopelessness about the child’s condition and future.
- Parents may blame themselves or their partner. However, they should keep in mind that that the cause of most congenital heart defects is unknown and thought to be random.
- Parents may isolate themselves because they do not know anyone else with a child with this problem.
- Sadness about the loss of the “perfect” or “ideal” child is a common reaction.
- There may be a fear of death of the child, a “real” or “legitimate” fear with some diagnoses.
- Parents may be angry at God, their partner, and/or the doctors about why this happened to this family.
- Bargaining for a better diagnosis by getting other expert opinions, if there is time.
- Stigma about what this means to the family and the child’s future
- Uncertainty about this child’s future and about having future children who have a congenital heart defect.
- Changes in family routines/schedules/medical appointments
- Stress that turns into parent headaches, stomach upsets, unable to eat/sleep
- New caregiving roles for certain family members
- Possible delays in caregiver returning to work due to medical appointments
- Concerns about possible financial impact, if family doesn’t have health insurance
- Concern about financial impact, if primary caregiver delays returning to work
- Gathering information about the diagnosis and running to other doctors trying to get a better diagnosis
- Stress about any symptoms and when and when not to call the doctor
- A focus on the “sick” child at the expense of paying attention to other children
- A process similar to grieving in some ways but not time-limited and the immediate care of the sick child is important
- Cyclical or recurrent feelings over time
- More complex than any book/article can describe
- Individualized, due to the variety of disabilities and the family
- Affected by cultural and/or religion standards about mourning or grieving
- Recurrent, especially at developmental milestones (ex.school entry, graduation)
- Recurrent, especially if there is another child
- “Bonding” or connecting with others who have had similar experiences
- Speaking in public/telling stories in counseling or support groups or in families
- Assuming leadership positions in support groups or volunteering at organizations
- Caring for the child appropriately so that you can enjoy his/her steps of progress
Provide Counseling to Couples, Parents, and Families:
- For individuals, couples, and/or families to discuss feelings about the diagnosis, options, stress of caring, and future issues.
- To discuss parent concerns about children’s developmental milestones.
- To discuss couples’ concerns about having more children with congenital heart defects
Provide Counsel to Siblings of Children with Congenital Heart Defects:
- About breaking the news to them about their sibling’s health condition
- To explain their sibling’s diagnosis and treatment
- To convey that it is no one’s fault that it happened, no one caused it.
Provide Counseling to Older Children (when applicable):
- About a planned hospitalization by encouraging visits, books, and bringing personal items from home
- About dealing with fears and concerns before and after surgery
- About absences from school for medical reasons
- About teasing from peers about their scars or physical restrictions
- About following restrictions on physical activity in gym class
- About the importance of taking medications
- About issues of “disclosure” of their medical history to friends, others
- About issues of feelings of isolation or “differentness”
- About the importance of keeping regular cardiac check-ups throughout life even when one is feeling well.
- To increase self-esteem, socialization, and independence
- About a healthy lifestyle, diet, exercise, no smoking
- Suggest that the child bring his or her favorite music and headphones to the hospital as music therapy has been used with hospitalized children. Music is soothing and the goal is to increase the child’s comfort and relaxation. Also, suggest the child bring art supplies, like crayons, etc.
- To discuss child’s developmental concerns with pediatrician
- To take their children to cardiologists regularly because children with surgery for congenital heart defects are at risk of future issues.
- To find out from the cardiologist if their child’s particular heart condition requires antibiotics for dental work.
- To speak with genetic counselors to find out if their child’s particular heart condition is genetically linked.
- Find support groups for families and/or siblings, consisting of people dealing with similar congenital heart defect issues
- With referrals for services (ex. Early Intervention) with permission
- Of children (birth-age18) with severe medical problems, and limited income and resources, with referrals to Social Security to apply for SSI
- With referrals to genetic counselors to discuss risks for future children
Advocate for Legislation:
- Requiring all infants to be screened for congenital heart disease before being discharged from the hospital. If this is not possible, hospitals should at least test those babies who have been found to have “heart murmurs.”
- Requiring all children be tested for congenital heart disease before they enter school.
- For patient education about congenital heart defects at hospitals via courses for expectant parents in Lamaze, newborn care, CPR/First Aid.
How to Find a Pediatrician and/or Check on “Board Certification” Specialty Status:
- American Academy of Pediatrics: www.aap.org
- American Board of Medical Specialties: www.abms.org
- American Board of Pediatrics: www.abp.org
Many provide information, membership, newsletters, resources, events, and support groups.
- Adult Congenital Heart Association (ACHA), 6757 Greene St., Suite 335, Philadelphia, PA 19119. Phone # 888-921-ACHA www.achaheart.org
- American Heart Association (AHA), 7272 Greenville Avenue, Dallas, TX. Phone # 1-800-242-8721 www.americanheart.org
- Art with Heart, P.O. Box 94402, Seattle, WA 98124, 206-362-4047)
www.artwithheart.org (has activities and art for hospitalized children)
- Birth Defect Research for Children, Inc. (BDRC), 800 Celebration Avenue, Suite 225, Celebration, FL 34747, Phone# (407) 566-8304, Website: www.birthdefects.org
- Children’s Heart Foundation P.O. Box 244, Lincolnshire, IL 60069-0244 Phone # 847-634-6474 www.childrensheartfoundation.org
- The Children’s Heart Fund at Mount Sinai Hospital, One Gustave Levy Place, Box 1201, New York, NY 10029. Phone # 212-241-7456 www.childrensheartfund.net
- Circle of Hearts, P.O. Box 662, Kenmore, NY 14217. www.cohearts.org
- Congenital Heart Disease Information Network (CHIN), 600 North 3rd St., 1st fl., Philadelphia, PA 19123. Phone# 215-627-4034 www.tchin.org
- Helping Hearts, Inc., 601 Elmwood Avenue, P.O. Box 631, Rochester, NY 14642. Phone # 716-275-6108 www.helpinghearts.org
- Kids with Heart: (NACHD) National Association for Children’s Heart Disorders P.O. Box 12504, Green Bay, WI 54307 Phone# 800-538-5390 www.kidswithheart.org
- Little Hearts, Inc., P.O. Box 171, Cromwell, CT 06416. Phone # 866-435-HOPE www.littlehearts.org
- March of Dimes, 1275 Mamaroneck Avenue, White Plains, NY 10605. Phone # 1-888-MOD-IMES www.marchofdimes.com
- The National Family Caregivers Association (NFCA). 10400 Connecticut Ave., Suite 500, Kensington, MD 20895, Phone # 800-896-3650 http://www.thefamilycaregiver.org
- (NHLBI) National Heart, Lung, and Blood Institute of the US Dept. of Health and Human Services/National Institutes of Health: www.nhlbi.nih.gov (go to A-Z Index, then Congenital Heart Disease)
- NYU Medical Center, Pediatric Cardiology, Mend-A-Heart Support Group NYU School of Medicine, 530 First Ave., New York, NY 10016 (212) 263-5940 Dana Connolly, N.P., www.med.nyu.edu (search: Mend-A-Heart).
- Parent to Parent USA: This is a national organization with chapters in almost every state. Matches parents to other parents who have children with similar special needs. http://www.p2pusa.org (click on state info. to find the local chapter nearest to where you live.)
Online Support for Caregivers
- http://www.carepages.com (Care Pages)
- http://www.strengthforcaring.com (Strength for Caregiving)
- http://www.dailystrength.org (Online support groups, such as Congenital Heart Defects, Parenting, Children’s Health, etc.)
- http://www.eparent.com (Exceptional Parent)
- http://www.hon.ch (Health on the Net Foundation: reviews accuracy of health sites)
- http://www.partnershipforparents.org (A support network for parents of children with serious illnesses via e-mail list.)
- http://www.childrenshospice.org (Has questions/answers, information, more.)
- http://www.jasonprogram.org (Has information for families of children with life-threatening illnesses on website)
- http://www.campsunshine.org (Retreat for children with life-threatening illnesses & families that is located in Maine)
National Association of Children’s Hospitals and related institutions: www.childrenshospitals.net (Click on Hospital search to locate one in your area). Most “children’s hospitals” have details on their website about congenital heart conditions and treatment options, research, etc. Boston and Philadelphia, in particular, have lots of published research in medical journals on pediatric cardiac conditions.
Online Medical Journals
Free e-mail notifications about new articles in your area of interest when you sign up. While most provide free abstracts, there is usually a fee for complete articles. Contact the author of the article directly, if possible, if you want the entire article and can’t afford the fee; the author might be able to send you a free copy.
- Cardiosource c/o American College of Cardiology www.cardiosource.com
- Circulation/American Heart Association: www.circ.ahajournals.org
- Doctor’s Guide: www.docguide.com (can set up to get weekly e-mails on pediatrics)
- Elsevier: www.elsevier.com OR American Journal of Cardiology www.ajconline.org
- JAMA: Journal of American Medical Association: www.jama.ama-assn.org
- MdLinx: www.mdlinx.com (Or go directly to: www.heartlinx.com )
- Science Daily: www.sciencedaily.com
- U.S. National Library of Medicine & National Institute of Health a.k.a Entrez Pub Med: www.pubmed.gov
Online Health Encyclopedias
- American Academy of Family Physicians: www.familydoctor.org
- Congenital heart defects: www.congenitalheartdefects.com
- Discovery Health: www.health.discovery.com/ (type directly to your browser)
- General Pediatrician’s View of the Internet: www.generalpediatrics.com (Cardiology)
- Health A to Z: www.healthatoz.com
- iVillage: www.ivillage.com or go directly to: www.parentsplace.com (newborn, health)
- Kids Health: www.kidshealth.org (Parents, then medical problems, heart&blood vessels, CHD)
- Mayo Clinic: www.mayo.edu (click on Health Info., Heart Disease,Congenital Heart)
- Medical Student: www.medicalstudent.com (Click on Pediatric)
- Merck Manual of Diagnosis & Therapy: www.merck.com (see Pediatrics section)
- National Center for Biotechnology Information: http://www.geneticalliance.org
Genetic Alliance-advocacy, education, empowerment. (Lots of information on the website about all genetic conditions, including heart defects)
- Pedi Heart: www.pediheart.org
- http://www.physorg.com (Research news on Health & Medicine-free daily e-mails)
- Rx List/The Internet Drug Index: www.rxlist.com
- Web MD/eMedicine; www.emedicine.com (Pediatric Medicine, then Cardiology)
OR www.emedicine.com/ped/contents.htm (Cardiology)
- Coping with Congenital Heart Disease in Your Baby. (1999, April 1st). American Family
Physician, 59 (7). American Academy of Family Physicians. Available at: http://www.aafp.org/afp/990401ap/990401d.html
- DeGroat, J. (2007, June 1st). Parenting a special needs child. The Jewish Press Magazine, p. F4.
- Experts offer parents guidance on avoiding congenital heart defects. (2007, June 8th)
HealthDay News. Available at:
- Graham, E. (2007, Spring). Cliffhanger: For the first time patients with severe congenital heart disease can live to see middle ageâ€¦ Dream: The magazine of possibilities (Children’s Hospital Boston), p. 16-19.
- Griener, G. (2007, March). Easing hospital anxiety. Parenting, p. 35.
- Helliker, K. (2005, Dec. 20th). A baby’s heart: The case for screening newborns for
congenital heart defects. The Wall Street Journal, p. D1.
- Jenkins, L. (2006, February 14th). With White’s triumph in the halfpipe, snowboarding
finally gains an icon. The New York Times. (www.nytimes.com)
*This Olympic winner had a heart surgery as a baby.
- Ouelette, E.M. (2006, Aug.). Bringing home a special-needs baby. Babytalk, p. 24.
Also available at: www.babytalk.com (click on Search, type in article title)
- Sanghavi, D. (2005, June). “Broken Hearts.” Parents, p. 85-88. Available at: www.parents.com (Click on: Kids, Health, Newborns)
- Schaff, R.V. (2006, Feb.). Healing broken hearts: Kids born with heart defects can lead
normal lives, thanks to modern surgical practices. American Baby, p. 29-32.
Also available at: www.Americanbaby.com
- Scribman, D. (2007, Feb. 20th). From the â€˜dark ages’ of heart surgery, a lesson for today.
Available at: http://www.nytimes.com
- Seidman, E. (2007, July). Lessons from Maxâ€¦Having a son with special needs has taught me to stop obsessing about how my child doesn’t measure up to other kids his age. It’s something all parents should learnâ€¦. Parents, 60-65.
- Smith, L. (2003, May). Music ideas for hospital stays. Available at: http://www.tchin.org/resource_room/c_art03.htm
- Smith, P.M. (1984, March). You are not alone: For parents when they learn that their
child has a handicap. NICHCY Newsletter: National Information Center for
Handicapped Children and Youth. Washington, DC. *Note: This organization was renamed NICHY, the National Dissemination Center for Children with Disabilities: www.nichcy.org
- Steele, R. (2007). Heart murmur in a newborn. Available at: www.ivillage.com
- Wernovsky, G. (2005). The emerging recognition of school and behavior problems in children with congenital heart defects. Available at: http://www.tchin.org/resource_room/CHDSchool.htm
- Whiteman, N.J., & Roan-Yager, L. (2007, June). Having your own life, despite caring for your special needs child. PARENTGUIDE, p. 18. Available at: www.parentguide.com
Book List for Parents
- Note: Books may be available at www.amazon.com or www.barnesandnoble.com
- Baby Hearts Press: http://www.babyheartspress.com/ (This publisher specializes in parent-friendly and parent-written books about experiences with CHD)
- There is an extensive list of book reviews at: www.tchin.org (The Congenital Heart Disease Information Network) (click on book reviews) AND www.achaheart.org (The Adult Congenital Heart Association) (click on store).
- Kramer, G.F. & Maurer, S. (2001). The parent’s guide to children’s congenital heart defects: What they are, how to treat them, how to cope with them. Three Rivers Press: New York. (www.randomhouse.com) (ISBN: 0-609-80775-7) If looking on the library shelves: (RJ 426.C64 K73 2001 OR 618.92’12-dc21))
- Neill, C. A., Clark, E.B., & Clark, C. (2001). The heart of a child: What families need to know about heart disorders in children (2nd Ed.). Baltimore, Maryland: John Hopkins Press. To order: (www.press.jhu.edu) (ISBN# 0-8018-6636-7) If looking in library shelves: (RJ 426.C64 N45 2001) OR (618.92’12043-dc21)
- Wild, C. J. (1999). Heart defects in children: What every parent should know. New York: Wiley. To order: (ISBN: 0-471-34735-3)
Early Intervention Resources for Parents of Children with Developmental Delays
- American Academy of Pediatrics: www.aap.org
- American Speech-Language Hearing Association: www.asha.org
- The Beach Center on Families and Disability/University of Kansas: www.beachcenter.org
- Center for Disease Control (CDC)/Center for Birth Defects and Developmental Disabilities
- www.cdc.gov (Click on: Developmental milestones)
- Council for Exceptional Children: www.cec.sped.org
- Disability Resources on the Internet: www.disabilityresources.org
- www.ed.gov/parents/needs/speced/edpicks.jhtml?src=In (US Dept. of Education.
See section on “My Child’s Special Needs.”)
- Family Voices: www.familyvoices.org
- Internet Resources for Special Education (IRSC): www.irsc.org
- Through the Looking Glass: www.lookingglass.org
- (NARIC). National Rehabilitation Information Center. www.naric.org
- (NAEYC). National Association for the Education of Young Children. www.naeyc.org
- (NECTAC). National Early Childhood Technical Assistance Center, part of: Child Development Institute/University of North Carolina-Chapel Hill Office of Special Education Programs/U.S. Dept. of Education Programs: www.nectac.org
- (NICHCY). National Dissemination Center for Children with Disabilities): www.nichcy.org
- National Institute of Health/National Institute of Child Health & Human Development: www.nichd.nih.gov (all birth defects)
- Pacer Center/Early Childhood Intervention: www.pacer.org