A Support Group For Parents Dealing With Hydrops Fetalis

Hydrops Fetalis Community forums
Our community forums are here for parents to discuss Hydrops fetalis, their experiences and to share information with others around the world.
You can read posts at the forums. To take part in the community you will need to login or register.
What Is Hydrops Fetalis?
Find out more about the definition of Hydrops fetalis, its detection, possible causes, possible treatments and more on the Hydrops fetalis information page.
Hydrops Fetalis Links
For a comprehensive list of links to Hydrops fetalis information on the Internet please visit the links page.
Hydrops Fetalis Database
An online searchable database of case information relating to Hydrops fetalis is under development. The database will record full case information from around the world including the following:
- Patient (parent and baby) contact information (not to be shown publicly)
- County of residence
- Ethnicity (has been known to influence chances of Fetal hydrops)
- Date & time of gestation that Hydrops was detected
- Location of hydropic build up of fluids in the baby's body
- Any known causes of the Hydrops
- Occurrence of any other fetal anomaly
- Images from ultra sound scans (will be edited to remove patient personal information from being displayed publicly)
- Outcome of the condition - survival rates can be calculated and compared to known causes / symptoms etc
- Fetal heart rates at various stages of gestation
- Fetal growth rates at various stages of gestation
- Tests completed
- Test results
- Medications used
- Procedures performed
- More data... please recommend any data to collect by asking in the forums
The data will be saved with full contact and patient information for verification purposes however when the data is displayed publicly no private information will be shown so it will all be anonymous to protect peoples privacy.
Will this data be useful? If we manage to collect a lot of data over time, the data will be extremely useful. If a doctor or parent can find almost identical matches between an entry in our database and the condition of a baby currently being diagnosed with Hydrops then a doctor can straight away determine what may or may not work in treating the baby.
Future Of This Site & The Hydrops Fetalis Database
For more information on this site and the development of the database please ask in the forums or contact Dan Gibas (who's that?).
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