Monday, February 8, 2010

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

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)



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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









Sensory
Integration Disorder



The Differences Between IDEA and Section 504
The
Center for Health and Health Care in Schools


Speech/Language












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



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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



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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



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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



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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



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Transplant Resources


Canadian
Association of Transplantation
National
Transplant Assist Fund
Transplant Living



Transplant Recipients International Organization, Inc(TRIO)
UNOS
Transplant Information Site
Transweb



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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

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