Shane Haley was born with anencephaly, a terminal birth defect in which babies are born missing sections of their skull or brain.
Anencephaly usually develops in the developing fetus during the first month of pregnancy, before most women know they are carrying a child. Nearly all babies born with this condition die soon after birth. Both parents knew of Shane's condition before birth, as well as his prognosis for a short life.
"Today at 6:15 a.m., 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," Jenna and Dan Haley of Philadelphia, parents of baby Shane, wrote on a Facebook page dedicated to their son.
The Haleys decided to create and experience a bucket list of activities to experiencing while the mother was still carrying Shane. These included visits to a pumpkin patch, zoos, beaches and a Phillies baseball game. The family even traveled to New York City, where they visited the Statue of Liberty and the 9-11 memorial.
"He's still our little boy and even though he's been given such a short life expectancy because of anencephaly, we wanted to make sure that we gave him a lifetime worth of adventures and love while he's with us," Dan Haley told reporters in September.
"Prayers for Shane," a Facebook community page set up by the Haley's, chronicled the adventures of the couple and their unborn child. More than half a million people signed up on Twitter to receive updates of the terminal infant and the parent's travels, carried with the hashtag #shanesbucketlist.
Anencephaly is a rare condition, affecting roughly one baby out of every 4,859 born in the United States, according to the Centers for Disease Control and Prevention (CDC). Most medical researchers believe the fatal disorder is brought about through a combination of genetics and environmental conditions. There is no cure for the birth defect, and no known treatment. This is due, in part, to the fact that anencephaly cannot be traced to a single gene, hindering possible genetic treatments.
"Women can take steps before and during pregnancy to reduce the risk of having a baby born with birth defects. Such steps include taking a daily multivitamin with folic acid (400 micrograms), not smoking, and not drinking alcohol during pregnancy," CDC officials wrote on a page providing information about anencephaly.
Shane Haley was due to arrive on October 12, but was born on October 9, perishing from his condition less than four hours later, while held in his mother's arms.
