‘Prayers for Shane’ and the Anencephaly Community

Philadelphia couple Jenna Gassew and Dan Haley knew their baby would not have long to live. They had been told that he suffered in utero from anencephaly, a horrific birth defect in which a baby is born missing parts of the brain or skull. It typically develops within the first month of pregnancy, often before the woman even realizes she is pregnant.

It’s not known what causes anencephaly, but one thing that is known is this: almost all babies born with anencephaly will die shortly after birth.

Knowing this, Jenna and Dan started creating a “bucket list” for their son before he was born. They regularly posted on a Facebook page called “Prayers for Shane” all the ideas and dreams they had of things they wished they could do with their son.

Then, while Jenna was still pregnant, they proceeded to do all the things on the list.

Their list included lots of sports games, concerts, visits to local landmarks and trips to the zoo and the Wildwood boardwalk.

Within a month, the Facebook page had garnered more than a quarter of a million followers.

“We talked about creating a page on Facebook chronicling his adventures so that all of our friends and family could keep up with us through all of our travel,” Dan Haley told BuzzFeed. “We never imagined the page growing so quickly.”

In addition to posting news about their bucket list adventures, Jenna and Dan interacted with other couples whose babies had been diagnosed with anencephaly, as well as those who had suffered the loss of children to the disease.

Raising Awareness

On the morning of Oct. 9, Shane was born. He lived for about four hours before passing away. The family updated their followers with the news and thanked them for their support.

Since then, the Facebook page has only grown in popularity. It now has nearly a million followers. It’s a place for people to share stories, encourage and support each other and network with other parents who have received this tragic diagnosis for their unborn child.

“We are so happy to see the positive impact that little Shane has had on so many people across the world,” Dan said. “More importantly — and Jenna and I talk about this often — it has raised awareness for anencephaly worldwide.”

About The Oshman Firm

The news of birth defect is a terrible thing for parents to endure. At The Oshman Firm, we are attorneys who help New York and New Jersey families when a defect is caused by pharmaceutical drugs or medical negligence. Don’t go through it alone. If you or someone you love needs support for a case concerning birth defect, let us at The Oshman Firm help. Call us at 212.233.2100 or fill out the form on the right side of this page.

image credit: Prayers for Shane