Sydney McFall   |   December 16, 2019

HLHS Mother and Fontan Survivor — Jessica’s Story

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Fontan Survivor

Jessica Rush is 36 years old. She is one of the oldest Fontan survivors and one of the oldest HLHS survivors. She’s also a daughter, a wife, and a mother

She was born with Double Outlet Right Ventricle and hypoplastic left heart syndrome (HLHS), a congenital heart defect (CHD) that means the left side of her heart was under-developed. However, she would go undiagnosed for over a month. It wasn’t until her parents woke her from a nap and realized her hands and feet were almost black that they knew something was wrong. Her parents were told she had little chance at life and absolutely no chance without surgery. So, on her two month birthday, she underwent the Glenn procedure. She was in cardiac arrest for ten minutes but made it through and the surgery was successful. 

At almost four she had the Fontan, still experimental at the time. Her doctors did not have much hope of her making it out of surgery. Still, she made it out alive and has the same heart she was born with. Jessica was even put on the heart transplant list at one point but her condition improved. She was thriving — until she wasn’t. 

HLHS Mother

At 20 years old, Jessica went to get some dental work done without taking antibiotic premedication. This led to a brain abscess 9 months later. Instead of celebrating her 21st birthday, holes were being drilled into her head in an effort to drain the abscess the size of an egg. Despite multiple medical issues and interventions, Jessica is alive today and living out her dreams. She has a zest for life and has skydived, bungee jumped, and snowboarded to name a few adventures. However, none compare to the accomplishment of her biggest dream — being a mom. 

Women with heart conditions are considered a high risk pregnancy. Even if they are cleared to get pregnant, in many cases it can be hard for them to conceive. Despite this, Jessica had a relatively smooth pregnancy. She maintained regular cardiology check ups throughout her pregnancy and was given oxygen to keep her oxygen saturation up. However, there would be a shock. Her baby would also be born with CHD. Tetralogy of Fallot (TOF), a combination of four heart defects. Being a heart warrior herself, Jessica remained hopeful. “Even so, being a new mom at the time, I didn’t feel fear for her,” Jessica remembered. 

Daisy Dreamer

Her daughter, Daisy, is now 12 and has had two heart surgeries of her own. “Being a mom is one of the most beautiful things. Watching her live her life and growing into a wonderful woman she will become is my reward,” Jessica said. 

Daisy loves dance, gymnastics, and dreaming big. “She doesn’t let anything stop her because of her heart condition. I [hope] she [will] follow in my footsteps and show the world it’s possible to live an amazing life with CHD,” Jessica said.

It is because of past research that Jessica and Daisy are living the beautiful lives they are today. Help Project Heart move that research further and further towards a cure for CHD. Become a monthly donor and help us grow a heart!

  1. Tamara Wyant   |   December 29, 2019

    Hi there. Thanks for sharing your story. I gave birth to a baby girl on 10/27/89. They offered us very little hope. She had her 1st surgery at 4 days old 2nd at 5 months and third at 11 months. She was not a candidate for transplant because her heart was also backwards. She did well through all but got a strep infection and passed at 16 months old. Years later I myself was diagnosed with WPW. I had been misdiagnosed for my whole life. I had an ablation when I was 28. I still have some SVTs and have to take incredible care of myself. I have not met anyone else who had a heart condition that gave birth to a baby with a heart condition. Thanks for your story

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