Victoria was just 20 years old and 20 weeks pregnant with her son Gavin when she was told that her son had Congenital Diaphragmatic Hernia (CDH). CDH occurs when the diaphragm doesn’t fully form allowing abdominal organs into the chest cavity and preventing lung growth. CDH occurs in 1 of every 2,500 births making it roughly as common as Spina Bifida and Cystic Fibrosis. There is very little awareness of CDH and even less research on the condition. As you might expect Victoria was devastated and a million questions swirled through her head: how could this have happen to me? Did I do something wrong?
Hate and heartache became overwhelming as Victoria came to terms with the devastating diagnosis. She eventually accepted that God had a plan for little Gavin, though she could not comprehend what that plan was. Gavin would have to fight for his life from the moment he was born and would have to endure surgery to fix the hole in his diaphragm. 50% of babies diagnosed with CDH do not survive.
Gavin was born on December 4, 2012 at 3:05 pm at a health 8 pounds 10 oz and 21 3/4″ long. He was taken directly to NICU with his dad in tow. Mom followed about an hour later. Gavin started extracorporeal membrane oxygenation or ECMO just 3 hours after he was born. ECMO can do the work of the heart or lungs when they are not able to function on their own. The doctors were also concerned that Gavin’s brain was bleeding.
On December 7th 2012, just 11 days before my own son was born, one of the NICU nurses called and asked if I would come spend some time with the family. Calls like that only mean one thing: that our time with Gavin was coming to an end. I left my beautiful, healthy little girl and her very pregnant mom at home, put my gear in the back of the car and started the trip down the 51 from Desert Ridge to the hospital. Covering children dying at a hospital is emotionally exhausting and I wondered if I could hold myself together long enough to create at least one image of Gavin that Victoria could treasure. When a pregnancy doesn’t go as expected, the family might not have an image to remind them that their beautiful angel really did grace us with their presence, even if it was for only a short time.
I ended up spending a little over 4 hours with Gavin, Victoria and Chris. During those four hours little Gavin took his last breath. I feel so honored that Chris and Victoria allowed me into their world and shared such a personal moment with me. And, I thank God every minute for my own children’s health. One of the things that became clear working so closely with the hospital was that there is nothing that separates one family from another, it is by the Grace of God that I am behind the camera instead of in front of it.
Desert Ridge Photography