Meet my niece Emma. She is a treasure to our family and I know she will be an example to others throughout her life. Today we are celebrating her and all the others in the world who's lives have been effected by Moebius Syndrome.
Emma is a strong willed toddler now and these images were taken in 2019 after her birth while she was in the NICU. I flew to Las Vegas to help her parents document what she was going through so one day she can see all the love and support she's had since the day she was born.
I've photographed hundreds of babies but never done newborn pictures like this before. It was one of the scariest moments of my life as moments after we were done taking these precious pictures her mother and I heard her have a little cough and quickly saw her begin the struggle for breath and turn blue. The life support alarms were signaling but no nurse was in sight to give aid. My sister ran for help and I stayed with Emma, trying to turn her to her side as best I could with all the tangled wires and hoses all over her body and pat her back to attempt to clear her airway. With any other baby I would have known what to do, but I hesitated as I weighed my options on how to clear her airway while risking the possibility of ripping a hose from her side that was feeding her. Would I just create an even worse life threatening situation?!
Thankfully before I could make matters any worse my sister ran in with a pair of nurses who relieved me of holding her and could now be the professional hands this baby needed to save her life. They worked on her for what seemed like 10 minutes before they could stabilize her and let her mother be by her side again.
It's been difficult to discuss this experience and I have never shared these pictures as it was to sensitive a memory. Now more than a year later and multiple surgeries behind her I see a very different child. I saw a video this past week of Emma taking her first steps (all while wearing her backpack that houses her food supply). I was so impressed!
With the worst behind her I can sit better with these difficult memories and instead be inspired from these images as I now see the triumph her life has been so far.
