C3’s Heart Journey: A First-Time Mom’s Story of Strength and Hope
A Heart Diagnosis That Changed Everything
As a young, first-time mom, Ashley knew that becoming a parent would change her life—but she didn’t realize just how dramatic that change would be until baby Christopher, affectionately known as C3, made his entrance.
At 20 weeks pregnant, Ashley learned that her son had a hole in his heart, otherwise known as an ASD (Atrial Septal Defect). He was diagnosed with Double Outlet Right Ventricle and Heterotaxy, two complex congenital heart defects. After birth, he was immediately transferred to Children’s Healthcare of Atlanta’s Heart Center at Egleston Hospital, where he remained for the next six months.
Overcoming Obstacles in the First Year
“After his first discharge, we were able to breathe a little until we found out he was not eligible for his Glenn procedure and had to repeat his BTT shunt,” Ashley said.
C3 experienced several surgeries in his first year of life—nine in total, with the Glenn procedure taking place just after his first birthday. During that time, he was part of the historic transition to the new Arthur M. Blank Hospital (AMBH), becoming one of the first patients in the state-of-the-art facility.
“There were so many ups and downs, but he overcame them all and has been at home now, living his best life,” Ashley said.
How the Children’s Team Made a Difference
Ashley credits the team at Children’s Heart Center for their proactive communication and support during such an uncertain time.
“They kept me informed and involved,” she said. “Everything from the bigger, softer beds in the patient rooms to the upgraded food service to the well-organized staff communication setup made a difference in how I felt as a parent.”
Ashley made the decision to put her studies at Georgia State University on hold to be with C3 full-time while he was in the hospital. The care team’s emotional and logistical support helped her through that difficult choice.
Inspired to Help Others: A New Career Path
Ashley had been studying psychology at GSU, but her experience with Children’s Heart Center’s single ventricle team sparked a new goal: to become a social worker for medically complex children.
“The single ventricle nurse practitioners and social workers were all excellent,” she said. “They helped me identify resources when finances were slim and connected me with other parents. Most of all, they were just there for me—popping in when I had a bad day to love on me.”
Advice for Other Heart Parents
After navigating the emotional rollercoaster of C3’s first year, Ashley has learned the importance of advocacy and clear communication.
“In my opinion, any question they can think of should be asked to the care team. No question is too small or insignificant,” she said. “Be patient with the team. There’s so much going on behind the scenes that we as parents don’t know or see. Be someone who your team wants to talk to—I learned so much just in casual conversation.”
She also emphasizes emotional awareness: “It’s okay to feel everything you’re feeling. Just remember to give yourself grace.”
A Thriving Toddler With a Big Personality
Today, C3 is a happy, playful toddler who loves dinosaurs, fire trucks, and playing peekaboo. He enjoys watching Ms. Rachel, playing tickles, and is working hard to eat by mouth after being fed through an NG tube since birth.
Ashley says his biggest victory has been learning to eat. He loves bananas, applesauce, and sweet potatoes, but still isn’t a fan of most vegetables.
“He doesn’t look like anything he’s gone through,” she said. “C3 is my first child, and while I wouldn’t wish the heart parent journey on anyone, I’m so grateful for him. He’s taught me how to advocate, how to be strong, and how to love on a medically complex child.”
C3 receives ongoing outpatient care from Tony Nelson, MD, at Children’s Healthcare of Atlanta Cardiology’s Center for Advanced Pediatrics clinic.
Related:
Physician’s with Heart: Dr. James “Tony” Nelson
Why Chloe’s Marathon is a Unique One
Full Circle: Mom’s history with CHD helps her support Heart Warrior
For more information about Children’s Healthcare of Atlanta Cardiology and our pediatric cardiology specialists, click here.