Anna Marie Elizabeth Storey

Anna’s Story

“…she laughed and took a bottle and reached for toys.”

Anna Marie Elizabeth Storey, trisomy 18, 9/20/1989 – 7/2/1990, Decatur IL

Anna Marie Elizabeth StoreyAs Summer fades and the nights become cooler, I am reminded of the last, sweet days of my pregnancy in 1989. At 29, I had a 8-yr. old son, Luke, and was hoping for a baby girl. I had a bad feeling throughout my pregnancy but my Dr. assured me everything was fine and called me “another hysterical pregnant person”. He later apologized and said he would probably only deliver one T-18 baby in his career.
Anna was born Sept. 20, by c-section (15 broken pelvic bones from a car on my honeymoon). Unlike the joy arrival of my son, there was silence for a moment.  An apgar of 9 made me feel better. Then a nurse announced a weight of 3 lbs, 12. oz.  Soon after, she was whisked out of the room, with me only getting a passing glance at her tiny little face. Love at first sight. I went to recovery and was in the hallway of the OB ward when my chosen peds. dr. thought there was a problem with the sex gene. She said my daughter would be short and unable to have children. Anna  was sent to the Neonatal unit in Springfield, IL (about an hour away). She was wrong.
On September 25, as I was leaving for the hospital, I received the call that changed my world. T-18, your daughter will die, she will never walk or talk, she will have no quality of life and you can place her in a home if you do not want to take her home. WHAT???? From that moment forward I felt like I was in a bad movie. But then something miraculous happened, she did not die; yet flourished when we took her home and my loving family surrounded her and she was put on prayer chains.  We so hoped she would defy the odds.
Then came seizures where she would turn blue, her lips black, and I would hold her upside down and say, Breathe Anna.
She would take a big breath and  turn back to pink. Some days she would do this 20 times. It became routine. As fall became winter she had good days and bad. My Dr. would make sure we came in the back door so Anna would not be exposed. She was totally amazed as Anna lived and thrived.  May 1990 she laughed and took a bottle and reached for toys. She was up to 8 lbs!
We attended the 1990 SOFT conference that was held is St.Louis. What a wonderful group of caring and compassionate people. At my hotel, Anna had a seizure in the lobby. I heard an ambulance siren. “Who was Sick?” A staff member saw her turn blue…the ambulance was here for us! At the children’s hospital her O2 level was 33 and they actually wrote on the paperwork, “Child will not survive the day”. Dr. Showalter, an amazing man and father, rode in the ambulance with us back to my hometown and made sure they were doing all they could for Anna.
She lived another 7 days and died July 2, 1990. Her father (who was deaf) asked to hold her the night she died at Decatur Memorial Hospital. They hooked up O2 so it was blowing directly in her face. Later a Nurse told me this: Her Dad took her in his arms, kissed her and prayed, “Lord, take this child home. At that EXACT moment, she quit breathing. All of us in room knew he had a direct line to God and his prayer was answered.
She never sinned and I find comfort in knowing she is in Heaven with her Daddy, who loved her and worked with her endlessly. Now the surgery to correct the heart problem is done. I was told she was not strong enough to survive. If I could done one thing differently,  I would have taken 1000s of more photos and videos. I cry as I finish writing…Anna would have been 24 this month. When my granddaughter Jillian (10) and I drive my the cemetary she says, “There is baby Anna…she died of a broken Heart”. Thanks for reading my story and may God bless anyone who is struggling/suffering with loss and those parents God blessed with a special child.

Mary Ziegler
mzeigler@millikin.edu