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Couple expecting terminally ill baby make most of pregnancy with bucket list

This couple turned their unborn son’s terminal condition into a celebration of his life, all before he even left the womb. 


Greg Seals


Between preparing your home for the arrival of a child and readying yourself to be a new parent, pregnancy can be a trying time in the life of any young couple. But only two short months after Jenna Gassew and Dan Haley found out they were to become parents, tragedy struck. During a doctor’s visit their unborn child was diagnosed with anencephaly, a terminal neural tube defect that affects approximately 1 in ever 5,500 children.

While most infants aren’t expected to live more than a few hours with the condition, Jenna and Dan had hope. In early August the couple began the Facebook page Prayers for Shane, and what began as a way of asking for support quickly turned into a way for the couple to scrapbook all their adventures with their unborn child.



Though the two held out hope that baby Shane would have the strength to survive, they relished in each moment of the pregnancy. From trips to the zoo to NHL playoff games, Jenna and Dan began crossing off experiences from Shane’s bucket list and enjoying each outing as a family. Along the way, milestones that would seem par for the course of pregnancy were signs of hope. On August 11, Shane had the hiccups which meant he was showing signs of swallowing.



As Jenna’s October due date neared closer, the couple soaked in every moment with their son. Trips to New York City and digging in your toes the sand at the beach, became moments to be cherished. As part of their vigil for the health of their son, the couple decorated and furnished his nursery, celebrating the gift of pregnancy with baby showers and cakes. 



Due to polyhydramnios and high fluid levels, doctors decided to induce labor on Tuesday, and after a lengthy labor, Shane Michael Haley arrived early Thursday morning to adoring parents. Tragically, Shane’s neural tube defect proved too much to fight and he passed only a few hours later surrounded by family and in the arms of his loving mother.


Rather than feeling cheated by losing their first child to the cruelty that life can sometimes bring, the couple took the chance to celebrate his life on Facebook. Thursday morning the couple posted, “Shane spent his entire life in the arms of people that loved him unconditionally and I don’t think you could ask for a more beautiful life then that.”

Photo via bibbit/Flickr (CC BY-SA 2.0)

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The Daily Dot