Emery August Hermsdorfer

Emery’s Story

“We feel blessed that we got to be with her as long as we did.”

Emery Hermsdorfer, Trisomy 13, 9/6/2013 – 9/8/2013, Shawnee, KS

Emery HermsdorferOn July 8, 2013, at 28 weeks gestation, my wife Jess and my unborn daughter, through amniocentesis, was diagnosed with Trisomy 13. ​ ​

On Friday September 6th, 2013 at 1:38pm Emery August Hermsdorfer was born. Weighing 4lbs 12oz and an astonishing 18” long! She was absolutely beautiful and showing almost none of the more common physical abnormalities such has cleft lip/palate, extra digits, etc.. Initially, because of her color, very little movement, and a heart rate of about 70bpm, the doctors told us to expect her to pass within the hour. But to everyone’s surprise Emery began to weakly cry and started turning pink, her heart rate climbed into the 150’s! The doctors were shocked. She was a fighter.

She was able to meet both sets of grandparents, her Aunt Jenna, and of course her big sister Cali (age 3) who sang rock-a-bye baby to her.

Her first night was very touch and go. She would stop breathing 10-20 seconds at a time every hour or so. These episodes were usually followed by her crying, like I said, she was a fighter. Needless to say Jess and I got no sleep and sat up all night holding her and talking to her and singing to her.

Emily August HermsdorferThe next day Emery had a feeding tube inserted through her nose and she did a great job of digesting and keeping her food down. They took her to the NICU for a couple of hours so Jess and I could get some sleep. The nurse checked her oxygen levels and said they were 100%. The nurse was impressed. So we began making arrangements to bring Emery home the following day, which we never thought in a million years would have been possible. Emery had other plans.

Emery August Hermsdorfer, the toughest person I’ve ever met, died in her parent’s arms at one o’clock in the morning September 8th, 2013. Nearly 36 hours after she entered our lives she was gone. She stuck around long enough to meet everyone and feel the love we had for her then she let go.

Through all of this the support we have received from friends, family, coworkers, the incredible staff at Shawnee Mission Medical Center, has been nothing short of spectacular and we could never thank them all enough.

Although we are hurting now we have a strong support system, we have each other, and we have Cali who does an incredible job of keeping us distracted. We feel blessed that we got to be with her as long as we did. Thirty-six hours that changed our lives forever and for the better.