Congenital Heart Defect Awareness Weak

Today kicks off a national campaign to raise awareness of congenital heart defects! As most of you know, my daughter, Michele was born with a heart defect, so this week is near and dear to me!

Congenital Heart Disease is considered to be the most common birth defect, and is a leading cause of birth-defect related deaths worldwide.
Despite the fact that CHD affects approximately 1.8 millions families in the U.S.,  a relatively small amount of funding is currently available for parent/patient educational services, research, and support.

Congenital Heart Defect Fact Sheet

• Sometimes during early pregnancy, a baby's heart fails to form properly, resulting in structural abnormalities known as Congenital Heart Defects. Although some defects are genetic, in many cases  the cause  is unknown.
• It is estimated that 40,000 babies with Congenital Heart Defects (CHD) are born in the United States each year. More than 1 million American children and adults with Congenital Heart Defects and Childhood Onset Heart Disease are alive today.*
• CHD is the most frequently occurring birth defect, and is the leading cause of birth-defect related deaths.
• Although some babies will be diagnosed at birth, newborns are not routinely screened for CHD. The consequences of a late diagnosis can have serious, lifelong implications, so it is important for the public to be aware of the signs and symptoms in newborns, and children.
• Some CHDs may not require treatment other than periodic visits to a Pediatric Cardiologist. Others can be treated with medications or repaired with surgery and/or procedures. Complex defects may require several surgeries and are never really "cured".
• Many cases of sudden cardiac death in young athletes are caused by undiagnosed CHDs and Childhood Onset Heart Disease.
• It is estimated that more adults than children are living with congenital heart disease, and this population is expected to grow by 5% each year. Yet, many adults with CHD are not receiving adequate ongoing care from trained  specialists.

    Signs and Symptoms of Heart Defects

Parents should be alert to the following symptoms in infancy: 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 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

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Some children with CHDs may not have any symptoms until later in childhood. Things to look for include: 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 a 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

If your child has two or more of these symptoms, talk to your pediatrician about a referral to a Pediatric Cardiologist.

Inclusion on the following lists does not necessarily imply endorsement, nor do we guarantee the accuracy of the information contained on these sites. Always consult your physician(s) with your questions and concerns. Adults with CHD Informational Resources Defect/syndrome Specific sites        Organizations Early Intervention/Special Education Summer Camps Grief /Bereavement Transplant Resources             Health Care/Insurance Web Guides Humanitarian Organizations   Return to the Internet links Home Page Adults with CHD Information ACC/AHA 2008 Guidelines for the Management of Adults With Congenital Heart Disease A Guide for Adults with Congenital Heart Disease Adult Congenital Heart Clinics Adult Congenital Heart Disease Passport (ACC) Adult Congenital Heart Disease: A Patient and Family Guide Care of the Adult With Congenital Heart Disease - 32nd Bethesda Conference ACHD CHAT with Richard Donner, M.D. Topics: Ablation; Atrial Arrhythmias; Coarctation Repair; Eisenmenger's Syndrome; Hemoptysis; Nose Bleeds; Pulmonary hypertension in TOF; Scoliosis; Valve Replacement CHD and Pregnancy Links to articles in medical journals Especially for Patients - ISACCD Living with Heart Failure: Information and Support for Patients and Caregivers Parents and ACHD'ers Speak Out! Pregnancy and Congenital Heart Disease Questions and Answers with Mary Cannobio, RN, MN, FAAN Gynecologic/Reproductive Issues in Congenital Heart Disease Insurance and Legal Issues Americans with Disabilities Act (U.S.) A comprehensive resource published by the U.S. Department of Justice Consumer Guides for Getting and Keeping Health Insurance (U.S.) Information about insurance law and assistance programs listed by state Support ACHD Online Support Group Adult Congenital Heart Association (U.S.) Canadian Adult Congenital Heart Network Canadian Congenital Heart Alliance Grown Up Congenital Heart Patients Association (UK) top of page Early Intervention/Special Education Early Intervention A Parent's Guide to Understanding Developmental Assessment Programs for Infants and Toddlers (U.S.) Zero to Three: National Center for Infants, Toddlers and families Special Education (School Age - U.S.) A Parent's Guide to Section 504 FAQ about Section 504 and the Education of Children with Disabilities Learning Disabilities:A Guide to the Individualized Education Program (IEP) LD Basics Sensory Integration Disorder Your Child�s Evaluation The Differences Between IDEA and Section 504 The Center for Health and Health Care in Schools Speech/Language Auditory Processing Disorder Normal Speech/Language Milestones Speech and Language Disorders: General information about specific speech and language disorders Grief/Bereavement Books about the Death of a SIbling Experiencing the Death of a Sibling as a Child GriefNet Memorial Garden Pregnancy and Infant Loss Center SHARE: Pregnancy and Infant Loss Support The Compassionate Friends, Inc. The MISS Foundation top of page Health Care/Insurance 5 Steps to Understanding How HIPAA May Affect You A Consumer Guide to Handling Disputes with Your Employer or Private Health Plan Benefits For Children With Disabilities Child Health Law and Policy Project Consumer Guides for Getting and Keeping Health Insurance (U.S.) Directory of State Title V Children with Special Health Care Needs Programs Disability Evaluation Under Social Security (SSI) Emergency Information Form for Children with Special Health Care Needs Evaluating Managed Care Plans for Children with Special Health Care Needs Healthcare Coverage Options Database Health Care Financing Administration Health Insurance Consumer Guides HIPAA - National Standards to Protect the Privacy of Health Information HIPAA: Your rights to health insurance portability How to Use Your Managed Care Effectively (American Academy of Pediatrics) Institute for Child Health Policy Insure Kids Now Medicaid: State & Territorial Government Information National Coalition on Health Care The Health Insurance Portability and Accountability Act (HIPAA) RxAssist:Patient Assistance Program Center SSI: Your Right to Appeal top of page Humanitarian Organizations Aldo Casteneda Foundation Big Love Little Hearts Children's Heart Link Healing The Children Heart Gift Heart to Heart International International Children's Heart Foundation International Hospital for Children PatientTravel.org - National Patient Air Transport HELPLINE Project Open Hearts Save A Child's Heart Shevet Achim Spencer's Fund The UnitedHealthcare Children's Foundation top of page Informational Resources Glossaries / Dictionaries Glossary of CHD Glossary - NASPE Library of Heart Diagrams: Royal Children's Hospital The Heart Center Encyclopedia Medical Information Cardiopulmonary Bypass Center Watch: Clinical Trials Listing service CHD Fact Sheet Child Physiology Children and Clinical Studies Genetic Counseling Genetics Home Reference Medline Plus: Drug Information Non-Invasive Tests and Procedures Map of the Human Heart (PBS) Pediatric Heart Conditions: Surgical Procedures Resources for patients in the UK What is ECMO? What is Genetic Testing? Medical Literature MEDLINEplus: Congenital Heart Disease PubMed: Literature Search Engine (Medical Journals) Parenting 20 Tips to Help Prevent Medical Errors in Children Adolescent Health Transition Project Caring for the Baby with Congestive Heart Failure Developmental Tools for Families and Providers Emergency Preparedness for Children With Special Health Care Needs Factors Contributing to Congenital Heart Disease Family Developmental Charts Feeding Your Infant with Congenital Heart Disease Growth and Development Helping Siblings Cope  Informed Consent, Parental Permission, and Assent in Pediatric Practice (AAP) National Information Center for Children and Youth with Disabilities - State Resources Pain, Pain, Go Away: Helping Children with Pain Preparing Siblings for Surgery Sibling Support Project The Care Notebook Transition Resources Supporting the Dynamic Development of Youth with Disabilities During Transition: A Guide for Families William's Heart Operation - an online booklet for parents Organizations/Foundations United States (National) Aubrey Rose Hollenkamp Children's Trust The Alliance of Genetic Support Groups Brave Kids Cardiac Kids Have H.E.A.R.T. Foundation Children's Rights Around the World Harrison's Heart Foundation Heart of Gold, Inc. The Kimberly Anne Gillary Foundation Mend A Heart Foundation National Information Center for Children and Youth with Disabilities National Organization for Rare Disorders Pediatric Heart Research Association Ryan Andrew Kaiser Memorial Foundation SADS Foundation Saving Tiny Hearts Society Spare Key Foundation Starbright Pediatric Network Stronghearts - Seamus Carroll Duffy Memorial Foundation The Braveheart Foundation The Children's Heart Foundation  United States - For specific Conditions Barth Syndrome Foundation Cardiac Arrhythmias Research and Education Foundation, Inc. CHARGE Syndrome Foundation Inc. Children's Cardiomyopathy Foundation Children's Hemiplegia and Stroke Association Hypertrophic Cardiomyopathy Association Kawasaki Disease Foundation National Marfan Foundation Pulmonary Hypertension Association SADS Foundation Spencer Crawford Children's Foundation-Pulmonary Vein Stenosis The Anthony Bates Foundation (HCM) The Noonan Syndrome Support Group The Turner's Syndrome Society of the United States United Patients Association for Pulmonary Hypertension Velo-Cardio-Facial Syndrome Educational Foundation Williams Syndrome Association Australia Sudden Arrhythmia Death Syndrome - Australian Information Site Canada Charge Syndrome The Canadian Marfan Association The Canadian SADS Foundation Turner's Syndrome Society France Association Nationale des Cardiaques Congnitaux Spain Josemaria Ordiales Foundation United Kingdom Children's Heart Federation Max Appeal (DiGeorge, VCFS) The UK Cardiomyopathy Association Little Hearts Matter (Single Ventricle Defects) CRY - Cardiac Risk in the Young Pulmonary Hypertension Association The Association for Children with Heart Disorders top of page Summer Camps Camp Del Corazon California Camp Bon Coeur Louisiana Camp Braveheart Georgia Camp Kaleidoscope          Henderson, NC Camp Meridian Ossipee Mountains, NH Camp Odayin Cross Lake, MN Cardiac Kids Camp             Eva, TN  Camp Systole Kansas City, MO Hope with Heart P.O. Box 2736 Fair Lawn, N.J. 07410 Phone: 973-728-3854 The Edward Madden Memorial Open Hearts Camp 250 Monument Valley Road Great Barrington, MA 02130 Phone 413-528-2229 Heart Camp Children's Hospital of Pittsburgh Camp Taylor Livermore, CA Victory Junction Randleman, NC Camp Moxie St. Paul, IN Dreams From the Heart Camp              Buffalo, NY The Boggy Creek Gang Eustis, FL top of page Transplant Resources Canadian Association of Transplantation National Transplant Assist Fund Transplant Living Transplant Recipients International Organization, Inc(TRIO) UNOS Transplant Information Site Transweb top of page Web Guides Healthfinder - U.S. Department of Health and Human Services MEDLINEplus: Health Topics

I am the mom of 4 wonderful kids, 3 boys and 1 girl. Looking at them, you know I have had many years working with and enriching the lives of children. I have an Associates (Magna Cum Laude) in Business Management, and a Bachelors in Early childhood Development and Education with a concentration in Child Psychology. I have almost 20 years in the Early Childhood field, and loving every minute of it! You can visit my site here