Negative Pregnancy Diagnosis. Before 2005, I’d never heard this term before. After having a high level sonogram done of our unborn son, I was given a pamphlet with the same term blazoned on the front in bold letters.
Driving home from Orlando that day, I read the literature wondering what hope it might offer me. I didn’t find it there. As my pregnancy continued, I would cling to hope wherever I could find it. I heard a story where a mom was given a diagnosis of Downs Syndrome but the child was born perfectly healthy. You see, I thought, the diagnosis was wrong.
I hoped this would turn out to be my statistic too. I dreamed of telling people, “Sorry, the doctors were wrong.”
Recently I was on a Facebook group called Parents of Little People of America. Someone was looking for information about a possible negative diagnosis and Aislinn Kern responded by posting:
“I’ve read plenty of testimonials from women whose doctors said “lethal form” and baby is happy, healthy and thriving. My own doctors scared the daylights out of me. Saying they couldn’t be sure what type of skeletal dysplasia my daughter would have and that it could be a lethal form. She is 3 years old. She is perfectly healthy and has achondroplasia.” (Achondroplasia is a common cause of dwarfism.)
Isn’t she beautiful? What hope this picture would have given me in 2005.
You can read more of Aislinn’s story here: https://thisfeelslikehometome.wordpress.com/2013/01/25/gabbys-story/
In my case, the doctors weren’t wrong. My son Samuel was born in August 2005 with Thanatophoric Dysplasia (TD), considered a lethal form of dwarfism. The doctors predictions of my son not surviving; however, were wrong. He is now ten years old.
When Cindy Placide was pregnant, she was told her daughter would have short legs and arms. She thought of the short people in her family and jokingly said, “If she’s a dwarf, I’ll take it. She’s still my child.”
In mid-June this year, Isabella was born. Indeed, she has short arms and legs but she is also diagnosed with TD, like my son. A nurse told Cindy she read about Samuel on the internet. So she contacted me.
Excited to learn of a child so close to us (Tampa to Atlanta), we made plans to meet. On a rainy Sunday morning, we checked out of our hotel and drove to a restaurant to meet Cindy. When I saw her, we hugged. I had tears in my eyes and I quickly used a napkin to hide them.
We talked, shared stories and then went to meet Isabella. I stared at her perfect little mouth, full head of curly black hair and alert eyes. The sound of her ventilator swooshing in the background with a monitor displaying her vital signs stood close to the crib. The room had large windows allowing the bright sunshine in. I stood there, just staring at her. She’s mesmerizing.
We talked to the wonderful staff of nurses and the NICU doctor assigned to Isabella’s care offering hope by sharing Samuel’s survival of TD. So hope comes in many forms. From hearing Aislinn’s story or Isabella’s mom, doctor and nurses hearing Samuel’s story, hope like a river runs through it.
Do you have a story of hope to share? I’d love to hear it. Who knows, you may end up being featured in a future blog.
By Evelyn Mann
Author, A Miracle In My Living Room
Romans 12:12 Rejoice in hope, be patient in tribulation, be constant in prayer.
Romans 15:13 May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope.