When we received the diagnosis on Virginia I looked all over the place for information on hydrops and cystic hygroma. So much of the information on the web is for medical professionals and loses so much of the baby that is in the womb. I was so happy to find a page on facebook that was dedicated strictly to hydrops (many of the women had babies with hygroma as well). It was so sad to read of their stories but it was a comfort to be able to read them as well and know what to expect.
A short time ago there was a post about the organization To Write Their Names in the Sand. This woman takes names of children that have passed away and draws their names on the sand in Mullalo Point in Western Australia. It is difficult to get your name submitted because the website is in such demand. Thankfully a wonderfully woman on the facebook page allowed us to collectively submit our babies names. The woman who drew Virginia's name in the sand did it multiple times because she was not satisfied with the result (we really appreciate the time that she took to do this) and I received a message today that Virginia's name has now been posted on the website. I wanted to share the link for the picture--it is absolutely beautiful and means so much to us!
5 years ago