Addisyn Piekarski and her mom, Kristen, had just the right outfit in mind for Addisyn’s Jan. 13 follow-up appointment with her heart surgeon, Dr. Robert Stewart. Sporting a shirt covered in small hearts, with a large, sequin heart in the center, seemed fitting to meet with the man who just 8 days earlier had repaired a valve in the 4-year-old’s heart.
No stranger to surgery, Addisyn had her first open heart procedure at 3 months old.
“We were living in South Carolina when Addisyn was born,” said Kristen, whose uneventful pregnancy showed no signs anything was amiss with the baby. “She was a fussy baby and didn’t sleep well. I took her to the pediatrician because I wanted to ask if changing to soy formula could make a difference.”
It was at that appointment that Addisyn’s pediatrician detected a heart murmur.
“Two weeks later we went to the cardiologist who performed an echocardiogram (a test that uses ultrasound waves to look at the heart),” said Kristen. “That test showed that Addisyn had a significant congenital heart defect.”
The next morning Addisyn was life-flighted to Charleston for open heart surgery.
“Everything happened so fast, her dad and I were completely freaked out,” said Kristen.
It turns out Addisyn was born with a congenital defect called Atrioventricular Septal Defect, or AVSD.
“In the defect Addisyn has there is a large hole between the left and right chambers of the heart as well as a failure of the valves between the upper and lower chambers to separate into two valves,” explained Dr. Stewart, chief of cardiac surgery at Akron Children’s.
“In her first operation the surgeon closed the hole in her heart and separated the common valves into a left and right valve,” he added. “But because the left portion of the valve was so small it couldn’t be completely repaired. That left her with a very leaky left valve.”
Addisyn’s doctors in South Carolina warned her parents she would need a valve replacement at some point down the road when she grew bigger. When Kristen relocated to the Youngstown area to be closer to family, she began the hunt for a new cardiologist.
“We were considering all the hospitals in the region, but our nurse practitioner, Sarah Watkins, at Akron Children’s Hospital Pediatrics in Boardman, encouraged us to seek out an opinion at Akron Children’s,” she said. “We were referred to Dr. Stephen Manu, a pediatric cardiologist at Akron Children’s.”
After evaluating Addisyn, Dr. Manu was concerned about the amount of leakage in her valve. He felt she would need surgery and referred the family to Dr. Stewart.
In November 2020, the family met with Dr. Stewart who surprised them by saying he felt confident he could repair the valve instead of replacing it.
“It can be tricky with little kids because the more you ‘tighten the valve’ to fix the leak, the more chance you have of making the valve too narrow,” he said. “But from where Addisyn’s leak was located, I felt I could repair it without obstructing the blood flow.”
The surgery was scheduled for January 5 ensuring Addisyn could spend the holidays at home with her family.
“Everything went perfectly in the operating room,” Dr. Stewart said. “I was able to repair the defected leaflet with a patch — reducing the leak to a very mild one. The advantage of her keeping her original valve is it will grow with her.”
After 4 days in the hospital Addisyn was discharged home with no restrictions other than to let her sternum heal. She will likely need more surgeries in the future, but Dr. Stewart hopes that won’t be for many years.
“Despite having this heart defect, I expect Addisyn will have a full and normal life ahead of her,” he said.
Since having her valve repaired, Addisyn has stopped taking the medications she was on to help her body cope with the leak. Although currently not attending school in-person due to COVID, the 4-year-old enjoys doing arts and crafts and spending time with her 1-year-old sister. She has even managed to add a few pounds to her pre-surgical, 30-lb frame.
Kristen says Addisyn will be closely watched with appointments every 6 months. She remains forever grateful to the team at Akron Children’s.
“I’m so glad I listened to Sarah and gave Akron Children’s a try,” she said. “Addisyn’s team was knowledgeable and had extensive credentials. I am very pleased with her progress and care.”
In 2014, Akron Children’s Hospital and the Cleveland Clinic partnered to create the Pediatric and Adult Congenital Heart Center, allowing pediatric cardiovascular surgeons and adult congenital cardiologists to collaborate on patient cases, share best practices and combine outcome data. That affiliation includes both organizations’ pediatric and adult congenital heart programs, giving families access to the very best pediatric cardiac care close to home, including surgical care for the most serious and complex congenital heart defects.