While we certainly did not make the choice to carry Joy to term based on the contributions her life could make to science, I am very happy to share that we were able to participate in several studies and published papers during and after her brief life. Some of these might be of interest to you or people you know, so please feel free to pass these links on.
- Joy was an organ donor. I plan to write a completely separate post on that topic soon.
- The first study that we participated in was Duke University's study on Anencephaly and Neural Tube Defects. There is still a lot that is unknown about the causes of anencephaly. We know that it some cases are related to insufficient folic acid that causes the neural tube not to close completely, but there are questions as to other environmental or genetic components. Duke is doing a multi-year study looking at DNA and environmental factors to try and solve some of these issues. We were able to participate in their study by completing a phone interview and submitting blood samples from both Eric and I as well as blood from Joy's umbilical cord. To date, Duke has collected samples from 5,700 individuals in 1,500 families. There are no firm answers to date, but progress is being made. If you're curious, here is the link to their most recent newsletter.
- On a related note, Duke also completed a study in 2015 in which we were able to participate about the Psychological Effects of Carrying a baby to term. The resulting paper has been published, and here is part of the abstract.
"Objective: The aim of the article is to examine the psychological impact, specifically symptoms of grief, post-traumatic stress and depression, in women and men who either terminated or continued a pregnancy following prenatal diagnosis of a lethal fetal defect.
Method: This project investigated a diagnostically homogeneous group composed of 158 women and 109 men who lost a pregnancy to anencephaly, a lethal neural tube defect. Participants completed the Perinatal Grief Scale, Impact of Event Scale – Revised and Beck Depression Inventory-II, which measure symptoms of grief, post-traumatic stress and depression, respectively. Demographics, religiosity and pregnancy choices were also collected. Gender-specific analysis of variance was performed for instrument total scores and subscales.
Results Women who terminated reported significantly more despair, avoidance and depression
than women who continued the pregnancy. Organizational religious activity was associated with a reduction in grief in both women and men.
Conclusion There appears to be a psychological benefit to women to continue the pregnancy following a lethal fetal diagnosis. Following a lethal fetal diagnosis, the risks and benefits, including psychological effects, of termination and continuation of pregnancy should be discussed in detail with an effort to be as nondirective as possible. "
The complete study is found here - I think it is a really interesting read (though I may be biased!) I know I personally feel that though it was difficult to carry Joy to term, it would have much more difficult dealing with the "what ifs" that an early termination would have brought. I was excited to see this study that adds some scientific clout to my personal experience. If you know anyone who works in the medical field, please be sure to pass this study on to them.
- Last but not least, we were contacted out of the blue about a year after Joy's birth by a CRNP at the hospital where she was born to see if we would be interested in participating in a case study about neonatal organ donation. Of course we said yes, and we answered a series of questions via email. When I heard the word case study, I assumed we were one of many participating, but as it turns out, we ARE the case study. In another case of God's providence in the little details, we got the first draft of the case study literally as I was in the hospital in labor with Noah. Stranger yet, Noah ended up in the NICU for a week after his birth, and Mary, the co-author of the paper (another CRNP) was taking care of him in the NICU recognized our name on rounds and we got to meet her and have a great conversation.
There were some things I didn't like about the first draft (certain changes were made to the details of Joy's birth story to make it more anonymous. However, though the I know the point of the case study was not specifically related to anencaphaly, if a parent carrying an anencephalic baby would happen upon the paper, I thought that making some of the details of Joy's birth accurate that were chose for specific reasons and after much research would be helpful.) We got to talk through these things with Mary and she and Kathy were happy to make the changes we desired. So there are still a few things that are not quite true (Joy aka "Abbey" in the study) did not live for an hour, but overall the details are much more true to life. Here is a complete .pdf of the study, if you're interested in reading it or passing it on to someone who works in a related field.
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