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SALT LAKE CITY — On Nov. 13, 2013, Amanda Zornes gave birth to a baby girl whom she and her husband named Abigail.
As the couple looked forward to bringing Abigail home, they were given some heartbreaking news: Abigail had a heart defect and would need to be life-flighted to Primary Children's Hospital.
The defect being undetected in utero, the Zornes family figured it was only minor and would require a small surgery to repair. However, after performing more tests, it was found that Abigail had hypoplastic left heart syndrome, a severe congenital heart defect where the left side of the heart did not develop correctly.
Being one of the more severe defects on the spectrum, HLHS requires a series of three palliative surgeries to reconstruct the heart.
“As a mother, it was the biggest and worst surprise of my life,” Zornes said. “I found my heart breaking as I realized the hard life my little Abigail would have in front of her.”
The couple looked forward, hoping that the surgeries would be able to save their little girl. However, it was soon found that Abigail was too sick to qualify for any of the surgeries. She passed away at Primary Children's Hospital three days later on Nov. 16.
In a note on the couple's Facebook page, Amanda Zornes wrote, “Abigail’s passing has left us with our own broken hearts. We so wanted to take her home and watch her grow up and play with her siblings. … While attending the hospital, we felt so alone and so lost ….”
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Before Abigail's diagnosis, the couple didn't know much, if anything, about congenital heart defects. While in the hospital, feeling so alone, the two would soon find that they were far from alone. Congenital heart defects are the No. 1 cause of death for children, and there is a 1 percent chance of having a child with CHD.
“I never knew this until Abigail was born, and now I am meeting lots of parents who have children with CHD or an angel baby who passed away," Zornes said. "Oh, the depths of their sorrow.”
In her grief, Zornes decided she needed to do something to help the families.
“We wanted to let them know they aren’t alone, that they have someone thinking of them and praying for them through their journey. So, we started a fundraiser in Abigail’s honor.”
She added, “My family and I have decided to raise enough money to purchase 365 Cuddle Bear sets for the families at the Cardiac Intensive Care Unit; that's one bear a day for a year. A Cuddle Bear set comes with a stuffed bear with a yellow stitched heart and an accompanied book. Each set is $25. Currently we are at over 250 sets, with our goal being 365 by Jan. 31.”
A Facebook page has been set up to honor Abigail and help raise funds, under “Cuddles for Kids.”
*KSL.com
Arianne Brown is mother of six kids. She writes columns on family and fitness and a weekly story for KSL. To read more articles, like her Facebook page https://www.facebook.com/WriterArianneBrown, go to her blog, timetofititin.com, Twitter @arimom5