Shane Michael Haley is due next month and is not expected to survive. Baby Shane was diagnosed with anencephaly, a terminal neural tube defect, early in pregnancy. When his loving parents were given the news of his short life expectancy, they created a heartwarming personal challenge to celebrate his life before birth: nine months of bucket list adventures.
I have a major amount of respect for these young parents. Jenna and Dan Haley learned of their son’s complex neural tube defect, which affects roughly one out of 5,500 pregnancies, giving the baby a life expectancy of hours to days. The condition causes babies to be born missing parts of the brain and skull. The couple currently has a Facebook page asking for prayers and support — in a best-case scenario, Shane’s survival rate could extend to more than one year.
This couple discovered they basically have nine months with their son before his birth. Any parents would be devastated by this news. I know I would.
Instead of letting precious time go to waste, Dan explains the reason for the in utero bucket list: “Most families wait until their baby is born to start making memories and traveling to places with them. We understood what it was and knew that our time with our son could be very limited, so we wanted to make the most of the time that we had with him.”
Shane’s bucket list is amazing and spans far more than many of us experience in a lifetime. These parents have done a great job. Their family-of-three adventures have included the Philadelphia Zoo, the Cape May County Park & Zoo, the 9/11 Memorial, the Statue of Liberty, the Empire State Building, a Zac Brown Band concert, Dewey Beach, a Phillies game and much more.
Did I already say that these parents are amazing? Being a parent changes you, but it wasn’t until I actually held my babies that I slowly began to recognize the preciousness of life. I’m still trying my hardest to take a beat and live in the moment with my kids each day.
These parents are an inspiration. Yes, they are surely struggling with unimaginable grief at their son’s grim diagnosis. However, this bucket list challenge has given the couple the opportunity to enjoy their short time with him without regrets.
Shane’s bucket list was officially complete on Sept. 6. Shane is due on Oct. 12. Shane’s birth may be tragic because of his diagnosis, but his parents can confidently say they have lived his life to the fullest.