A while after we received Naomi's diagnosis, I joined an online support group for mothers of anencephaly babies who have chosen to carry to term. (While technically Naomi's diagnosis is acrania and not anencephaly, the two tend to be clumped together.) From this group I learned of a research study being done by Duke University, and I contacted them about participating.
Heidi at Duke was very gentle and compassionate when I spoke to her by phone. She explained the basics and made it very clear that there would be no direct benefit in participating for me or my baby as far as treatment, etc. She asked me (a few times) whether I wanted to participate. Of course! Granted I have a bit of science nerd in me combined with an appreciation for research studies, but I can't imagine why anyone would think this was a bad idea or be unwilling. Participation involves one blood sample from me, one from the father, and a blood cord sample from the baby. They also want a few pictures of the baby's head without a hat covering it, and dh and I will have to fill out some detailed medical questionnaires.
Heidi also asked if I had any other questions. I told her how the MFM specialist had said that acrania was NOT a neural tube defect, yet this study included acrania babies. I'd done some googling and not gotten a clear answer on whether it is or not. She said that there is disagreement among the experts as to whether it is or not, so basically, we don't know! So, another good motive for participating in this study. (She didn't say that, I am.) If they don't get more info, they can't figure stuff like this out. The vast majority of anencephaly and acrania babies are aborted, which means the opportunity is no longer there to learn more about how to prevent this from happening in the first place.
Duke mailed me the kit and a packet of info. I will need to make sure the kit goes to the hospital with me to collect the cord blood (and get the blood draws from me and dh, which can be done at a different time if need be, but is easier to just do all at once to mail together). The package came in during the Christmas rush so I'm just opening it now. One of the midwives asked me to bring it in during an appointment so that they'd have time to look at it and make sure they don't have any questions about what they will need to do. They do not want possession of it until I'm in labor as it will surely get lost in the office or hospital if I leave it there beforehand.