On March 23, 2010, I waddled into the operating room at Fairfax Hospital in Falls Church, Virginia, holding a bag of test tubes and directions for extracting cord blood. Our identical twin boys, Thomas and Callum, were born and their cord blood was sent to Durham by FedEx within hours. Thomas died of anencephaly five days later. In addition to his cord blood, we donated Thomas’s eyes and liver cells to research. I imagined what the researchers thought about when they opened these packages. I wondered what they did with the donations. And I felt a little jealous of the time they would be able to spend with my little guy. My time getting to know Thomas was over, but theirs was just beginning.
In 2012, I realized that nothing was stopping me from meeting these mysterious individuals who were a new part of my family’s history. So I booked a hotel room, and my husband, Ross, Callum and I drove five hours from Washington, D.C. to Durham to meet the anencephaly researchers on November 11, 2012. We learned the names, shook the hands, and even hugged the people who received Thomas’s donation: Allison Ashley-Koch, Simon Gregory, Deidre Krupp and Heidi Cope. We got the opportunity to learn about their work and ask questions. Karen Soldano gave us a tour of the lab where we followed the journey that Thomas’s samples took. We visited the area where his sample is stored. It felt like visiting our son at college and meeting his new friends.
Meeting these researchers helped me understand that Thomas is relevant in this community. He has co-workers and colleagues, and they cannot do their job without him. My family has something common with these researchers: we both spend our time thinking and talking about Thomas — just in different ways.
Originally published at medium.com