The newborn son of a Philadelphia couple who was diagnosed with a rare birth defect died just a few hours after his birth Thursday, but not before his parents completed everything on a bucket list that they had created for him.
Dan and Jenna Haley were told in April that their unborn son, who they named Shane Michael Haley, had anencephaly, a terminal neural tube defect in which the baby is born without parts of the brain.
The condition occurs in about 1 in every 4,859 pregnancies in the United States, according to the Centers for Disease Control and Prevention (CDC), and almost all babies born with the condition die shortly after birth.
The Haleys decided to carry Shane to full-term, and were determined to make the most of their time with Shane by creating a bucket list to complete during Jenna’s pregnancy. The family took trips to a pumpkin patch, celebrated milestones with family, visited the zoo, traveled to New York, enjoyed a Phillies game, watched Dan play baseball and completed every other goal on the list.
At each stop, the couple shared photos and memories with their 600,000-plus Facebook followers. On Thursday, Dan posted the news of Shane’s death just a few hours after sharing the news of his birth.
“Today at 6:15AM, after meeting his entire family and being baptized into the Catholic faith, baby Shane died peacefully in his Mother’s arms .. we are so grateful for the time that we were blessed to hold and hug our son .. the support and prayers we have received from all of you have been amazing and we want to thank each of you with all of our hearts,” the post read.
“Shane spent his entire life in the arms of people that loved him unconditionally and I don’t think you could ask for a more beautiful life then [sic] that .. he is home now with the Lord and will forever be our little miracle!”
Within minutes, thousands of messages of support poured in and the post was quickly shared around the web.