Resources For Heart Families
Register to attend a CPR class.
Support GroupsCalifornia Heart Connection - CHC is a network of support, information and resources for children and adults affected by congenital heart defects. They connect heart families through special events, online support groups and matching families with similar experiences. For more information, see www.caheartconnection.org or call (949) 653-6421.
The Congenital Heart Information Network - TCHIN is an international organization that provides reliable information, support services and resources to families of children and adults with congenital and acquired heart disease. TCHIN offers online support groups for many different types of congenital heart defects. For more information, see www.tchin.org or call (215) 493-3068.or call (215) 493-3068.
Flu shots - Many children with congenital heart defects can be susceptible to the flu. Ask your pediatrician if your child and other members of your family should get flu shots to help prevent the flu in your household.
RSV Vaccinations - Respiratory Syncytial Virus (RSV) is the most common respiratory virus in infants and young children. In most infants, the virus causes symptoms resembling those of the common cold. In infants born prematurely and/or with chronic lung disease or heart problems, RSV can cause a severe or even life-threatening illness. Ask your cardiologist if your baby should get the RSV vaccine, and check to see if your insurance company will cover cost. The vaccination consists of one shot per month during flu season. For more information on the vaccine, contact the manufacturer at www.medimmune.com or call them at (877) 633-4411.
Medic Alert Bracelets - If there is an emergency, medical personnel can call the phone number on the bracelet and MedicAlert will give all pertinent medical history such as surgeries, current medications and normal oxygen saturation level for your child. For more information see www.medicalert.org or call (800) 432-5378.
Wallet Card on Bacterial Endocarditis - Bacterial Endocarditis is a serious infection of the heart that can develop with dental work or other medical treatments. Contact your cardiologist to find out if antibiotics are recommended for your child and obtain a wallet card. See the American Heart Association's web site for more information at www.americanheart.org.
American Heart Association www.americanheart.org.
The AHA web site has information and statistics on congenital heart defects as well as bacterial endocarditis. The AHA offers brochures such as "If your child has a congenital heart defect" which explains the most common types of heart defects and "Feeding infants with congenital heart disease-a guide for parents".
The Heart Center Encyclopedia www.cincinnatichildrens.org/heartcenter/encyclopedia
This informational Web site is a great resource for families of children with congenital heart disease. Prepared by doctors at the Children's Hospital Medical Center of Cincinnati, it addresses many questions about congenital heart disease and offers basic information about the heart, different types of defects and different types of treatments.
An organization focusing in on children with heart disease.
The Cardiothoracic Surgery Network www.ctsnet.org/
Links to surgeons and medical journals online
Created by Debbie Hilton-Kamm for parents expecting a child with HLHS. This site includes information on surgical options for babies with HLHS as well as questions to ask the surgeon, hospital, and the insurance company.
Genetic Home Reference www.ghr.nlm.nih.gov
Information about genetic conditions
Finding health information on the Internet
Breastfeeding resources and support
Mother and Infant Health www.childbirth.org
Information on pregnancy, childbirth and infant care
National Safe Kids Campaign www.safekids.org
Information on child safety in the home, car and community
Care Notebook and Care Organizer www.cshcn.org/resources
A notebook that can be downloaded with pages to keep track of appointments. Helpful for families of children with complex health needs.
Healthy Families Program www.healthyfamilies.ca.gov/
The Healthy Families Program is a state and federally funded health coverage program for children with family incomes above the level eligible for no cost Medic-Cal. For more information call 1-877-KIDS-NOW or call 1-888-747-1222 for Medi-Cal for Children and Healthy Families General Information.
Supplemental Security Income (SSI) www.ssa.gov/notices/supplemental-security-income/
SSI is a Federal income supplement program funded by general tax revenues. It is designed to help aged, blind and disabled people who have little or no income. It provides cash to meet basic needs for food, clothing and shelter.
California Children Services (CCS) www.dhs.ca.gov
CCS is a statewide program of specialized medical care and rehabilitation for handicapped children. CCS provides medical case management and financial assistance to children who meet CCS eligibility criteria.
The Parents Guide to Children's Congenital Heart Defects. What they are, how to treat them, how to cope with them.
By Gerri Fried Kramer and Shari Maurer
More than thirty leading experts in pediatric cardiology give detailed answers to help parents learn to live with their child's congenital heart disease.
The Heart of a Child
By Cathering Neil, MD, Edward Clark, MD, and Carleen Clark, RN
An overview of congenital heart disease and the most common methods of treatment, including descriptions of defects both directly and indirectly associated with CHD, as well as many illustrations.
What the Doctor Didn't Tell You About
By Mary Kleinman
A general book about congenital heart disease and its impact on children and families. Kleinman explains thirty defects and provides detailed illustrations.
Regional centers provide Occupational, Physical and Speech Therapy and other services to children who have disabilities or who are at risk of delays due to medical conditions. Services are free to families, regardless of income or insurance.
Orange County Regional Center-www.rcocdd.com
Telephone: (714) 796-5222 or (800) 244-3177
Inland Regional Center-www.inlandrc.org
Telephone: (909) 890-3000
For a list of other regional centers not listed here, see the Directory of Regional Centers at http://www.dds.ca.gov/RC/Home.cfm
Camp Del Corazon - A free, nonprofit ACA accredited camp specializing in children ages 7-17 years old with heart disease or with a history of heart disease. This camp is held on beautiful Catalina Island over Labor Day weekend. Telephone: (818) 901-0323 or Toll Free (888) 621-4800. www.campdelcorazon.org/TL Contact - Create a free web site for your child while he or she is hospitalized to keep family and friends updated. For more information see www.tlcontact.com.
Make A Wish - Any child under the age of 18 with a life threatening illness may be eligible for a wish. Wishes granted include going on vacations, meeting professional athletes and other celebrities, getting a computer, etc. The amazing things provided by this organization are endless. Contact them to see if your child is eligible to receive a wish. For more information see www.makeawish.org or call (800) 722-9474or call (800) 722-9474