As told by his mother, Sarah

When I was 12 weeks pregnant we found out that one of our identical twins had anencephaly. There was nothing we could do to change the diagnosis – our son was not going to get better. I felt that the universe had done something unfairly mean to us. I felt that donating his organs and tissues would help us at least make a small change for the better in how the world works. Also, I wanted my sons life and death to be part of something bigger than just our family.

There were some obstacles along the way. We had to ask doctors and nurses to take blood when it wasn’t really part of their job. We filled in paperwork and did a medical social history interview. We tried to interpret sometimes conflicting regulations, but I am glad I stuck with it. Most of the medical staff we worked with were not experienced with these issues, so we learned together.

We were able to donate Thomas’s eyes, his liver cells, and his cord blood. I visited the facilities that received the donations, which was very helpful in my emotional recovery. Those days were some of the most important in my life. I was able to learn about the research that is now part of my family history. I was able to shake hands and hug the researchers who received my son’s donation. It made me feel that Thomas is a valuable partner in their research, and he has colleagues and co-workers. He is relevant in this community and the researchers were very grateful for Thomas’s contribution.

If I had a choice, I would rather have my son be alive and healthy. But my choice was between burying his organs in a cemetery or allowing them to be used for transplant or research. I am glad I chose donation and I would encourage anyone who is interested to look into it.

You can learn more about Sarah’s journey to connect with the researchers who used her Thomas’s gifts by watching her speak by clicking here.