Congenital Heart Disease
Congenital heart disease is the name for heart problems people are born with. It affects about one in a hundred babies although some conditions are not diagnosed until adulthood. Congenital heart conditions vary greatly amongst individuals and the usefulness of generic websites is limited. Please contact a health practitioner competent in adult congenital heart disease if you are concerned about your health.
Please keep in mind that most websites recommended here are designed and updated overseas and not all of the content is applicable to New Zealand.
Key Points:
- Treatment of congenital heart disease has improved dramatically over the last 30 years
- It is very important to work closely with your healthcare team
- Ask questions when there is something you’re not sure of
- Taking your medication every day and at the right times is important.
- Make sure you know what the early warning signs are, what to do and get help early
Overview
The following websites provide a range of resources and information on congenital heart disease. Most are American, Canadian or from the UK as there is less information available from NZ sources.
 | Congenital Heart Disease | National Heart Foundation | |
| Congenital Heart Disease in children | Heart Children NZ Inc | |
| Non profit organisation dedicated to supporting children and their families with congenital heart disease | |||
| Congenital Heart Defects |  | |
| useful American website from the US National Library of Medicine and the National Institutes of Health | |||
 | Videos of various congenital heart conditions | | |
| Congenital Heart Disease | John Hopkins Childrens Centre | |
| excellent American website provided as a public service by John Hopkins University (Useful pictures and diagrams) | |||
| Canadian Adult Congenital Heart Network | Canadian Adult Congenital Heart Network | |
| Forum for sharing knowledge and experience about congenital heart disease. Website has resources for both consumers and health professionals. | |||
| Chest Pain | Covepoint | |
| American Educational Website | |||
| Syncope (passing out) | Covepoint | |
| Tests for investigating heart problems | John Hopkins University | |
| includes chest x-rays, echo, exercise tests | |||
What can I do? - Self help measures
Healthy eating, regular exercise (check with your doctor first), being a non-smoker, taking your medications correctly, having a positive attitude and seeing your healthcare team regularly, are all very important steps you have control over for keeping well.
| Tips for weight management and blood lipids control | John Hopkins University | |
| How does obesity affect my heart condition? | John Hopkins University | |
 | Do I need antibiotics when I go to the dentist? (Wallet Guide) | National Heart Foundation | 150 Kb |
| Heart Foundation Guidelines updated Dec 08 | |||
| Safe exercise and training | John Hopkins University | |
| What do I need to know about arrhythmias | John Hopkins University | |
| Do I need antibiotics when I go to the dentist? (Patient Flyer) | National Institute for Health & Clinical Excellence - UK | 234 Kb |
| Heart Foundation Guidelines updated Dec 08 | |||
Treatments & Medication
Treatment for congenital heart disease has improved dramatically over recent years. It includes all the self-help measures listed above as well as various surgical operations and medications to keep your heart working as well as possible. The following websites contain some general information but you need to check with your cardiologist what is right for you.
| How is congenital heart disease treated? | National Heart Foundation | |
| Medications commonly used | National Heart Foundation | |
| Surgical procedures | John Hopkins University | |
| Endocarditis Guideline for Prevention of Infective Endocarditis Associated with Dental and Other Medical Interventions | National Heart Foundation | |
| updated Dec 08 | |||
| Antibacterial Prophylaxis for Dental Procedures - A4 Wall Chart | 1 Page | |
| Changes to Your Antibiotic Cover | National Heart Foundation | 2 Pages | |
| Patient Leaflet | |||
Support
Social, emotional and practical support from family and friends is very important. Many people also find it extremely valuable to talk with other people or families that have been through similar experiences. A number of organisations and websites are available to help this occur.
| Support for families in NZ | Heart Children NZ Inc | |
| 2 local branches and support groups throughout NZ http://www.heartchildren.org.nz/localbranchwebpages.html | |||
| Adult Congenital Heart Association (US) | Adult Congenital Heart Association (ACHA) | |
| American non profit support organisation | |||
| Statistics | | |
| American Satistics | |||
| Genetic Testing | | |
| Teenagers | | |