MonoAmniotic.org created for women diagnosed with a monoamniotic pregnancy
Title
Monoamniotic Monochorionic Support Page
Description
This site came about from an informal e-mail support group. The members found it had the necessary resources to put together a site (and silly me suggested it.. and consequently nominated to become the "glue" to make it happen - just when my boys were being born). Seriously, the group had someone who was willing to do the web page "assembly" and technical work, a couple to host a site (many thanks to SVN.NET), volunteers to contribute the money for a domain name "monoamniotic.org," (by the way there is a less used spelling of monoamnionic that I was stuck on... ah) and some determined parents and expecting parents to help others out there going through what we did when we discovered the terrible odds quoted by our doctors that our newly discovered twins may not survive their journey to babyhood. With awareness, there is a much better chance that the babies may survive and that is this site's mission - knowledge and support.
A board of our most involved people was formed and literally thousands of e-mails later - the site is becoming what we've envisioned it to be. There is still lots of work to be done and it's all volunteer by parents of twins - which is hard to do. The older my twins become, the harder it is for me to maintain the site. It's only by the incredible sacrifice of spare time (and time stolen here and there) that we've managed to pull this off. My goal now is to make the site self-sustaining. I have much work to do to do this, but hopefully I can do at least that much.
The site began with just the initial Introduction Letter as the web page with e-mail address in May, 1998... and has been slowly growing into a site with more information, a FAQ, a medical terms page, and most importantly a BBS Forum for folks to communicate. After we reached several dozen folks, the e-mail list was a bit unwieldy for some who didn't want all the e-mail. It was decided early on to protect the confidential info (e-mail addresses and names) of folks within the group thus - the authentication process (login). The BBS provides for most of the interaction between members - but the site does collect quite a bit information if we ever have a member with enough energy to compile it... we could make use of it.
