Tricuspid atresia, DORV, restrictive VSD
The birth of a child is a time of joy and celebration, filled with the promise of a bright future. However, for some families, the arrival of a newborn can be marred by unexpected medical challenges. One such challenge is congenital heart disease, where a baby is born with a structural problem in their heart. For these babies, the most crucial moments of their lives sometimes come not with joy, but with the urgency of immediate medical intervention, such as open-heart surgery.
Such was the case with Shayla Simone’s baby. At 20 weeks pregnant, her doctor discovered something wrong with the baby’s heart during an ultrasound. Everything was a blur from that point on.
Koda Zade Wallace was born March 31, 2022. He was diagnosed with tricuspid atresia (in which the right-sided internal valve did not form), double outlet right ventricle (with the aorta and pulmonary artery connecting abnormally to the right pumping chamber), and a restrictive ventricular septal defect (blocking blood flow within his heart).
At just one week old, Koda had his first open-heart surgery with Children’s cardiothoracic surgeon Dr. Robert Dabal. A week later, he went back to surgery, but this time, he was found to have a cecal perforation of the bowel and a small segment of his intestine was removed. This required Koda to have an ileostomy performed by Children’s general surgeon Dr. Chinwendo Onwubika.
After two major surgeries back-to-back, Koda needed a month and a half to heal. After four months at home, Koda had his ileostomy reversed and a G-tube placed to help him safely feed.
“At six months old, Koda had his third surgery,” Shayla explained. “The second stomach surgery was more painful for him than any surgery he had. While healing from this, he went into third-degree complete heart block, resulting in an additional surgery to place temporary pacing wires.”
Now, at almost 3 years old, Koda is doing much better. He currently has a pacemaker and had his ileostomy removed at six months. “He is doing great and has had no complications,” Shayla added. “He lives his life like any other 2 year old.”
Koda now comes back to Children’s every six months to see his cardiologist, Dr. Robb Romp. “The doctors and medical staff at the hospital took amazing care and became family to us,” Shayla said. “I felt supported every step of the way. Dr. Dabal, his staff and his therapist made sure Koda could live a long, promising life. Nothing can prepare you for moments like this, but it’s important to be surrounded by people and staff who truly love what they do. I feel like we got that here at Children’s, and we are forever grateful.”
