We were watching EMHE last Sunday night and as they are describing the family they say that the little boy was born with Hydrops Fetalis. I had to pause the tv and just stop for a second because I wasn't sure if I could continue to watch it. This is the same condition that took the life of Virginia (but she also had cystic hygroma--fluid behind her neck). I found it to be very bittersweet as well because I am happy for this family that their little guy survived this terrible condition, I am also glad that it will bring national publicity to this disease but it also means that another family has been affected by this disease.
I had never heard of hydrops before I had Virginia and it just breaks my heart that I hear of it sooo often now. There is just not enough being done for this disease. No parent should be told in a geneticists office that there is nothing that they can do for their baby and that there is no hope. Obviously there is hope because there are babies that are surviving this condition. I think that part of my mission is to try to bring more awareness to this disease--even if it just helps families to know what to expect.
5 years ago