Every Little Milestone Counts … Big!

Ollie spent his first Halloween at Children’s Healthcare of Atlanta Heart Center in the CICU, just 7 days post-op from his second open heart surgery. Mom Stephanie remembers that they had to get special permission to allow Ollie’s big brother, Pierson, to visit for a few precious minutes. However, due to a last-minute heart CAT scan, Pierson was unable to visit. This year, the boys dressed up as Peter Pan and Smee, and Mom and Dad stepped out as Captain Hook and Tinkerbell. Stephanie said she and her , Josh, shared hugs and a few tears, whispering to each other, “We’ve made it this far.”

Halloween was followed by Thanksgiving and Christmas, and Stephanie said it was special that Ollie could spend all the holidays with his family from out of town this year. What a long way they have come, indeed.

Stephanie and Josh found out that Ollie had multiple congenital heart defects at her 20-week ultrasound. Anticipating Ollie’s birth, they worked to coordinate childcare for 5-year-old Pierson and become informed about their baby’s heart condition. He made his entrance three days early, and his diagnosis with Shone’s complex – a heart condition with at least three defects that affect blood flow in the left side of the heart – was confirmed.

At 5 days old, Ollie had his first open heart surgery to repair coarctation of the aorta (CoA) and went home with a feeding tube. But within weeks, he was unexpectedly back in the hospital and having his second open heart surgery. He has faced serious respiratory issues as well as ongoing feeding challenges, but Stephanie said he’s doing well at 18 months old and recently took his first steps. Ollie will likely need another surgery to replace his pulmonary valve before he’s 10 years old.

“We’re excited he’s now on the growth chart, where he’s made it to the fifth percentile,” Stephanie said. “He still struggles with feeding therapy and getting enough calories. He wants to do everything on his own terms. We’re so happy to watch him grow and be able to spend time with his cousins and his brother, who adores him.”

Stephanie said having a good support system was key to helping her handle the complexities of having a heart warrior child. Her advice to other parents is to cultivate those connections and trust in the care Children’s Healthcare of Atlanta Cardiology provides.

“Although there will be dark and hard days, Children’s Healthcare of Atlanta’s Heart Center and outpatient cardiology clinics will take good care of your child,” she said. “Connect with other heart parents if you can because it’s good to have someone who understands. You’re stronger than you know.“

Ollie sees pediatric cardiologist William Border, MD, at Children’s Cardiology’s Alpharetta clinic.

Physicians with Heart: Dr. William Border

Children’s Cardiology Patient Stories

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