Amelia’s Story

As told by her mother, Alie

(October 2013) My heart and soul is full of love and longing and indescribable joy as I write this – we just received news that one of Amelia’s heart valves was shipped to a hospital in Georgia for transplantation. Our daughter is giving someone a second chance at life!! I haven’t been able to stop grinning from ear to ear. The tears are freely flowing down my face with gratitude and joy, knowing it was all worth it.

After our baby (Amelia) was diagnosed with anencephaly, a fatal birth-defect, we were devastated. I felt robbed, cheated, and saddened to know that the baby inside of me would never become a part of our family in this life. But when my husband and I decided to ask our doctor about organ donation, we began to feel a sort of peace and purpose to the dark and dreary journey we were going through. Our partnership with the California Transplant Donor Network started shortly thereafter, and has continued to this day as we help them strive to educate others to better understand the process of organ donation in infants. We hit many roadblocks and a lot of legal red tape – it was technically considered illegal to obtain her organs before she died. We met with the hospital’s ethic’s committee, full of surgeons, nurses, and CTDN advocates, to come up with the best solution for organ donation. Organ Recovery surgeons and staff were on-site at Amelia’s birth, in awe and amazement at the gift she would soon give.

In the end, Amelia “outlived” the (California) organ recovery window for major organs, but they were able to recover her heart valves after she died. One of her tiny heart valves has been sent to another baby in Georgia as I write this. My heart is full of joy, despite the loss of our daughter. This entire mortal experience I’ve had over the past year and a half has been brutal. It’s been relentless and more unforgiving than I ever imagined. But days like today, where my soul is brimming with happiness at another baby’s second chance at experiencing this beautiful earth, makes it all worth it.

To learn more about Amelia’s story you can visit Alie’s blog, Delighted To Be.


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