Jesaiah’s Story

Jesaiah’s story as told by his mother, Adaia

I am a mother who lost a baby boy named Jesaiah Alexander S. on December 20, 2014. This precious boy was born December 19, 2014, at 9:05 pm. Our baby boy was diagnosed with anencephaly at 13 weeks gestation. We were told our boy would not live long past birth if I didn’t miscarry first. We were given the option to terminate the pregnancy. Needless to say we did not see this as an option. We were heartbroken. We felt as if our joy and excitement was ripped away. We looked to God for comfort. After a few days of talking with God and each other, my husband and I knew what we wanted. We knew that the only one who could change the outcome or get us through this was God, not us. So we decided to work toward something good. We knew we wanted our son to become an organ donor. Something good would come out of this difficult time. This brought us hope and comfort.

Our journey for him to become an organ donor was not an easy one. We were told by many doctors (including a specialist at Johns Hopkins) that organ donation in infants was not a possibility, especially in our area. We came across many obstacles. One of them being our OB doctor. He gave us the impression he did not agree with us continuing the pregnancy. We requested he look into our son becoming an organ donor and he shot us down. So my husband and I decided it was time to switch doctors (25 weeks).

With the help of our new OB doctor and family doctor we were finally able to get a hold of The Living Legacy Foundation of Maryland (our local organ procurement organization). TLLF sent out a coordinator who helped us through the process and she was simply amazing. We were excited for our son to be part of something so important, being able to bring hope to 12 other possible families (by donating liver cells and heart valves) whose children were battling some serious disease or illness . Due to circumstances out of our control he was not able to donate his organs as we had hoped. He did, however, bring awareness to the surrounding area (Cumberland, Md). The LL coordinator assured us Jesaiah still accomplished a big thing that day. The doctors who have been in this area for 20 + years advised us how they weren’t aware of this option before Jesaiah came. TLLF was able to come Cumberland to train and educate the hospital staff on the possibility of infant organ donation. I am so proud of our little hero Jesaiah. His short life has made a big impact. I am glad we chose life.