First-time parents Jenna Gassew and Dan Haley of Delaware County are making the most out of Jenna's pregnancy.
Just 2 months after they found out they were expecting, doctors gave the young couple the news that something was wrong with the baby Jenna was carrying.
The diagnosis is anencephaly, a rare and terminal condition where babies typically die shortly after birth.
In a situation that first seemed hopeless, the couple remains thankful they received the heartbreaking news as early as they did.
The couple started a Facebook page on August 2 called “Prayers for Shane,"
Dan and Jenna are asking for prayers and are using the page as a virtual scrapbook to share places they are experiencing during the pregnancy.
Using the hashtag shanesbucketlist, friends can watch the family visit places, such as Wildwood and Linvilla Orchard’s petting zoo. Baby Shane got to meet some of the Philadelphia Phillies and the Phanatic while inside his mother's tummy.
“We know we have this time with him and that’s awesome,” said Jenna.
The first-time mom explains that most parents carrying a baby with anencephaly don’t find out about the diagnosis until the mom's further along.
How the young couple came to find out about the baby's condition was like a movie.
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 a small 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.
Back at home Jenna and her mom went to Bryn Mawr Hospital where Jenna had an ultrasound done. They learned of the diagnosis just two days before Jenna and Dan’s four year anniversary.
Since anencephaly is a rare condition, not many people know a lot about it, including Jenna and Dan.
The doctors didn’t really encourage them to research the condition. Jenna said the doctors warned them about looking information up on the Internet because some of the images of anencephalic babies can be hard to look at.
Jenna explained that one of the first questions the doctors asked is whether she plans to carry to "full-term."
Raised Catholic, the couple agreed that was never really a question for them.
And they learned more about the condition.
According to the Center for Disease Control and Prevention, anencephaly is a serious birth defect in which a baby is born without major parts of the brain, skull and scalp, and happens during the first
month of pregnancy.
Only 1 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 which also helped them cope with the situation.
Through online research, Jenna found out that anencephalic babies need to wear preemie onesies. Jenna's grandmother made alterations on a few that they picked out together so they would be easy to get over the baby's head.
Since the diagnosis, tremendous support has poured in via Facebook. Family, friends and even strangers have commented and liked the pictures. There are several new wall posts each day from people giving the couple encouragement and prayers.
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 October 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 showing them setting up Shane's crib which is appropriately sports-themed with a soccer and football mobile.
On August 11, the couple shared news that Shane had the hiccups which is rare 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.
"It's nice and it's a blessing that they're with you for the whole thing," Jenna says.
The couple has several more trips planned 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.
Photo Credit: Prayers for Shane facebook