Amy and Andy, a couple from Mahomet, IL, were married with one son, Jackson, when they found out they were expecting their second child. But the excitement turned to anger and sadness at Amy’s 12 week routine ultrasound appointment when she sensed something was wrong. As she told News Channel 15:
The whole time I’m looking at the scan thinking, maybe, his head just doesn’t look right. Maybe it’s blurry. It’s probably nothing. I’m just, ya know, being nervous.
However, the doctor soon told Amy that baby Gabriel had anencephaly, a condition that is “incompatible with life.” According to the Centers for Disease Control and Prevention, anencephaly is a rare neural tube defect (1 in 4,859) that occurs when the upper part of the neural tube doesn’t completely close. It happens during the first month of pregnancy and as a result, most of the brain, including the forebrain and cerebrum do not form. The couple was told that Gabriel could die within seconds of his birth.
Amy says that in that moment of hearing the diagnosis her emotions ran from shock and anger to disbelief. She wondered why this was happening to her child. But despite their fears, Amy and Andy knew that they needed to capture every precious moment of Gabriel’s life, both in and out of the womb, quite simple because “he’s our son”. They took family photos while Amy was pregnant and asked a volunteer photographer from the organization Now I Lay Me Down to Sleep to take photographs during Gabriel’s delivery.
Gabriel was born on November 5, 2013 and lived for 5 ½ hours. Those hours were moments and memories created with their son and preserved for the family through photographs.
The reporter from News Channel 15 asked Amy and Andy why they chose to share their story. And for them, it was quite simple. As Amy says in the interview:
This is very difficult to go through and I don’t want anybody to feel like they’re alone or have no option. You know, maybe not even a fatal diagnosis but just a difficult diagnosis to deal with. If we could help somebody even minutely that would be enough for us.
There’s no doubt that Gabriel’s story is helping another distraught couple choose life for their child who has received a prenatal diagnosis. Despite only living 5 ½ hours outside of the womb, Gabriel has the power to change and save lives.