Since anencephaly is classified as uniformly fatal, we'd like to be able to help others out in any way that we can. The first thing we thought of was studies that we could participate in or donate Emma's body to. The second thing we thought of was donating parts of Emma's body to other babies who had a chance of survival.
There really aren't a lot of studies being done concerning anencephaly. However, we did find one that Duke University is doing. They've been at it for a long time and probably will continue for a while. They are hoping to find genetic and/or environmental factors causing anencephaly. There are speculations about certain causes, but nothing is really certain. For this study, there was quite a bit of paperwork that Tim and I had to sign, I did a 45-minute telephone interview with them about the medical family histories of Tim and I and our families, then they want blood samples from both Tim and I. From Emma, they want her cord blood and pictures of the opening on her head immediately after birth. It's really quite simple and I'm glad that we can participate.
As for donating Emma's organs or tissues, that was a complicated issue. Apparently there are a lot of debates about anencephalic babies being donors and the issue has gone back and forth over the years. I finally found a website for donors in Pennsylvania (I promise that this is going somewhere). That website had a links section and in that links section was a website for donors in Utah and Idaho, Intermountain Donors. But even after I found that website, I still struggled to get answers. However, I did find contact information. So I started to email people. But my emails went unanswered. Finally Scott came to the rescue! Apparently he was the right person to contact (although in my other emails I asked if they could refer me to the correct person). He emailed me back and told me a number to call and to ask for him.
I called Scott on Monday. He said that Emma's heart valves are the only thing that she would be able to donate. One of the debates right now is the definition of brain dead and I guess you can't be brain dead until you are at least 7 days old. Apparently the heart valves are the only thing that you can donate without being declared brain dead. (And if we waited for 7 days, Emma's organs wouldn't be in good enough condition anymore to give to someone else). So I was thinking that Emma's heart valves were all that she could donate and that that wouldn't work because she has a hole in her heart. I told Scott that and he said that that didn't matter. As long as she hadn't had open heart surgery, her valves would be good to donate.
But there's still one more catch. Emma needs to weigh at least 5 lbs. to donate her heart valves. Scott said that they're willing to go a few ounces under 5 lbs. for anencephalic babies because of the fact that since they don't have a full head, they're missing all of that weight - meaning a 4 lb. 13 oz. anencephalic baby could very well be the same size as a 5 lb. baby. But even then, I feel like 4 lbs. 13 oz. is a lofty goal. One that I would love to achieve, but I don't know if it's in store for little Emma.
So while I'd love for Emma's heart valves to go to some other sweet little baby, I'm not getting my hopes up for it. And I'm feeling satisfied that at least we can participate in the Duke University study.