The joy and anticipation every couple will go through while waiting for the arrival of their baby, is magical. They may be thinking of all the places they will bring their child go, the things they will do together and the experiences they will give to help their child learn and grow. Well, not all couples are blessed with such a chance. Reality has been cruel to this young couple, Jenna Gassew and Dan Haley.

13 weeks into the pregnancy, they were told that their baby, Shane, was down with a neural tube defect called Anencephaly. Babies with this defect are born without parts of their brain and skull. It is a terminal birth defect that occurs in approximately one in one thousand pregnancies. Life expectancy for babies born with Anencephaly ranges from a few minutes to hours, or in some rare cases, days. Shane was diagnosed with Anencephaly and he had a slim chance of survival.

Jenna and Dan did not give up hope on their child. They decided to make the most out of the pregnancy by coming up with a ‘bucket list’ filled with meaningful activities for Shane. The couple went on to complete the various milestones and events that Shane would have gone through if he were alive.

“When we found out that Jenna was expecting, we would often talk about all of the places that we wanted to go as a family after Shane was born,” Dan recalled. “After his diagnosis and understanding that almost 100 percent of babies with anencephaly die shortly after birth, we decided to start visiting the places we had wanted to go with him while he was living in his Mother’s womb.”

Bucket List Fulfilled (adapted from ABC News 2014):

Cape May County Park Zoo in Cape May, New Jersey • Philadelphia Zoo • Adventure Aquarium in Camden, New Jersey • 9/11 memorial in New York City • Statue of Liberty • Empire State Building • Times Square • Central Park • Strasberg Rail Road near Lancaster, Pennsylvania • Beach in Wildwood, New Jersey • Beach in Cape May, New Jersey • Rehoboth Beach in Delaware • Dewey Beach in Delaware • Phillies game • Philadelphia Flyers game • Meet the Phillies • Meet Flyers (including Claude Giroux) • Dad’s Delco league baseball games (championship) • Ocean City, Maryland boardwalk and games (old time photo) • Rides at the pier in Wildwood, New Jersey (including Ferris wheel) • Shrine of St. John Neumann in Philadelphia • Shrine at St. Rita church in Philadelphia • Geno’s Steaks in Philadelphia • Spruce Street Harbor Park in Philadelphia • Zac Brown Band concert • Linvilla Orchards in Media, Pennsylvania • Uncle Jim’s baseball game at Penn State • Ashbridge Memorial Park in Bryn Mawr, Pennsylvania • Cape May Lewes Ferry in Lewes, Delaware • Franklin Institute in Philadelphia

These photos were documented on the Facebook page that was set up for Shane.

Both Jenna and Dan are really incredible and inspiring parents, to all the parents out there. Four hours after his birth, Shane passed away peacefully in his mother’s arms. Jenna and Dan continue to share about their journey and hope to bring more awareness to Anencephaly through their Prayers for Shane Facebook Page.

By Crystal Tan | Photo Source: Prayers for Shane