As told by his mother, Juliana

After we found out that our son had anencephaly and would not be able to survive after birth, we felt so lost and sad. We had never heard of anything like it before. We were transferred to a hospital specializing in high-risk pregnancy, where they were able to confirm Davi’s condition. On our first appointment at this hospital, they offered us the option to donate. Donation from a baby with anencephaly is something quite new in the UK. The first transplant was done only two years ago, so they were not quite sure of what Davi would be able to donate. We met with the nurse practitioner responsible for organ donation in the NHS, and he explained the whole process to us.

There were a lot of factors that could affect his donation. He would have to be at least 36 weeks in order to donate the heart valves, which made us wonder what would happen as I was only 16 weeks then, but things were fine throughout my pregnancy. Davi was growing and gaining weight. This made us feel so relieved that he was able to show progress just like any other baby despite his condition. At the end of the pregnancy, we chose that he would be born at our local hospital, where our journey began, West Middlesex University Hospital. There we felt more welcome and had a lot more support, and it would not affect the donation process.

When Davi was born we were so happy that he was finally here, but at the same time we knew his time with us would be short. He lived for 12 amazing hours and filled our hearts with so much love I cannot even begin to explain. I still feel his smell, remember the little sounds he made. The day after he passed, one of the nurses from the organ donation team gave me a call to ask me a few questions about my medical history to make sure they could proceed with the surgery. After confirming everything was ok, they took him and surgery lasted around 2 hours, and then he was given back to us. We felt that our work was done and that we did our best to make his time here be remembered. Our son was not here for very long, but he made an impact on so many lives. Today (November 14, 2015) we received a letter from the team confirming that his valves were ok for donation. It made me so emotional, and it reminded me of our long and difficult journey, but now so rewarding, with our little one being able to save others. We would have done it all over again.