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Expectant Couple Seeks Prayers and Support on Facebook After Devastating Diagnosis

The Delco couple's first child has a rare condition and is not expected to survive.

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    NEWSLETTERS

    First-time parents Jenna Gassew and Dan Haley are making the most of Jenna's pregnancy.

    Just two months after the Pennsylvania pair found out they were expecting, doctors gave the young couple the news that turned their lives upside down: something is wrong with the baby.

    Their unborn child has been diagnosed with anencephaly, a rare and terminal condition that usually leads babies to die shortly after birth. He is not expected to survive.

    Confronted with a situation that seemed hopeless at first, the couple started a “Prayers for Shane" Facebook page to deal with the pain and seek support from friends and family. They use the account to ask for prayers and use the page as a virtual scrapbook to share things they are experiencing during the pregnancy.

    Using the hashtag #shanesbucketlist, friends can follow the family visiting places, such as Wildwood and the Linvilla Orchard’s petting zoo. They chronicled a trip to visit the Philadelphia Phillies along with the Phanatic traveling along inside his mother's tummy.

    “We know we have this time with him and that’s awesome,” said Jenna.

    Finding out about the condition was like something out of a movie for the young couple.

    In April, the couple drove to Penn State to see Dan’s brother play baseball when their car slipped on a patch of black ice, leading to an accident.

    “We were both fine. I wasn’t showing yet though and I wanted to make sure the baby was okay,” Jenna said.

    The emergency room doctor told them to see a specialist because there was some internal bleeding.

    Once back at home, Jenna and her mom visited Bryn Mawr Hospital for an ultrasound. The diagnosis came just two days before Jenna and Dan’s fourth anniversary.

    Since anencephaly is a rare condition, not many people know a lot about it.

    Jenna was warned about seeking information on the Internet because the images of anencephalic babies, who are born missing part of their brain and skull, may be graphic.

    She said one of the first questions the doctors asked was whether she planned to carry to full-term. Having been raised Catholic, the couple felt that abortion was not an option.

    As they learned more about the condition, they embraced the pregnancy.

    According to the Center for Disease Control and Prevention, anencephaly is a serious birth defect in babies born without major parts of the brain, skull and scalp. The defect occurs during the first month of pregnancy.

    Only one in every 4,859 babies in the United States is born with it, according to the CDC.

    Jenna and Dan became involved in online support groups, helping them to cope with the baby's condition.

    Through online research, Jenna found out that anencephalic babies need to wear preemie onesies. Jenna's grandmother made alterations to a few that they picked out together, making it easy to get it over the baby's head.

    Since the diagnosis, tremendous support has poured in via Facebook. Family, friends and even strangers have left comments and liked the pictures. There are several new wall comments each day from people giving the couple encouragement and prayers.

    "It's nice and it's a blessing that they're with you for the whole thing," Jenna says.

    Dan came up with the idea for the Facebook page. He says the site has allowed him to bond with Shane in a special way as the baby's Oct. 12 due date approaches.

    Throughout the summer, Shane attended his dad's baseball games and was dubbed his "#1 fan."

    The couple also shared photos that show them setting up Shane's crib, which is appropriately sports-themed with a soccer and football mobile.

    On August 11, the couple shared the news that Shane had hiccups, a rare occurrence for anencephalic babies with polyhydramnios. Jenna believes it's a sign he is strong.

    The couple recites the "Angel of God" prayer every night before bed and they say the rosary at St. Lawrence Church every Monday night in Upper Darby.

    They say, during this time, Shane is especially active.

    The couple has several more trips planned for Shane, including Ocean City, Maryland and Lancaster, where Jenna's sister lives.

    "It's the hardest thing in the world but you can make it through. We're his parents and we're going to take care of him as long as we can," said Jenna.