Ryah, our first child, was the perfect daughter. She was born a beautiful and healthy baby girl, and as she developed she made us proud with each early milestone. Plus, she was well-behaved, for the most part. So when I became pregnant again, it was only natural for my husband and I to assume that we would enjoy the same blissful parenthood experiences all over again.

     In March of 2004, however, during what in the previous pregnancy had been the much-anticipated ultrasound that revealed the baby’s gender, our perfect world crumbled. The ultrasound technician became very quiet as she examined the grainy images of our baby on the screen. Her eyes shifted away from us, and she politely excused herself from the room leaving us feeling horribly uncomfortable. When the door opened again a few minutes later, in walked my obstetrician with a very somber expression. Her soft words to us were confusing and uncertain. Our baby was underdeveloped with some deformities on the face, specifically a cleft palate, but more tests were needed. She would arrange for us to see a specialist. That was it...nothing has been the same since that day.

     After a few days of uncertainty, sharing our fears with family and friends, and hearing them assure us that everything would be OK, we visited the maternal-fetal unit for more examinations of our baby. We walked in with the confidence everyone had given us that everything would work out fine because doctors can work wonders with all of the advanced medical technology today. However, a more intense ultrasound and an amniocentesis revealed the truth: no medical technology could help our baby. Our child had a serious chromosomal disorder — probably fatal. It was only after all of this devastating news that it dawned on us to ask the gender of our precious baby. The doctor told us we were having a girl, another beautiful, perfect little girl who was soon to be diagnosed with Trisomy 13, or Patau’s Syndrome, a fatal condition.

      Before receiving the official results from the amniocentesis, Clay and I spent the next few days researching all of the trisomy disorders. We learned volumes of very hard facts very quickly, and we learned that our daughter had all of the severe anomalies of Trisomy 13: a cleft palate; underdeveloped lungs, liver and other abdominal organs; heart issues; and the lack of separation between the hemispheres of the brain. As difficult as it was to hear, the phone call from my physician only confirmed what we already suspected. Then we knew that if our daughter were to be born alive, she would not live very long. But that did not stop us from praying for a miracle. As the baby grew within my womb, we pondered names. Ultimately we decided to name our daughter Zoe Evangeline Johnson. Zoe is an ancient Greek word meaning ‘life.’ And Evangeline is a derivative of ‘evangelist,’ with the root word ‘angel,’ all meaning ‘a bearer of good news.’ We knew when her name came to us that our daughter would be a life that brought good news to many.

     I began to have complications with the pregnancy and my body began to suffer with edema, and eventually there was the threat of severe toxemia. After running several tests the doctors and our family decided to deliver Zoe by C-section. On July 1, 2004, Zoe Evangeline Johnson was born. All of her grandparents, a few close friends, Mommy and Daddy were able to hold her tightly as her heart beat for 90 minutes, then she went to sleep, passing on to be with our Lord. Several months afterward, I became pregnant again, but the pregnancy ended in miscarriage on January 14, 2005.

     All of the difficulties we faced – the real fears, the imagined horrors, the unforeseen challenges – created in us a desire to help others who are enduring or have endured similar losses.