Jace Calaway

Down Syndrome, Atrioventricular Canal Defect, RSV, hMPV, ARDS

Jamie Calaway never imagined her infant son Jace would be admitted to Children’s of Alabama fighting for his life, but she was grateful such a place existed. Children’s was where Jace needed to be. Jace was born prematurely with Down syndrome and an atrioventricular (AV) canal defect – a large hole in the center of the heart that would require surgery. The initial plan was to do surgery when Jace turned 1, giving him time to grow, but unbeknownst to doctors and Jamie, Jace was silently aspirating. At age 5 months, Jace had respiratory failure and heart failure, and was rushed to his local hospital. “He was immediately put on a [ventilator], and our local hospital knew he needed to be transferred to Children’s in Birmingham,” Jamie said. “They called Children’s Critical Care Transport team to come get him and they did.” After three weeks in the hospital, doctors had created a plan for Jace’s heart surgery. “We weren’t sure going into surgery if it could really be fixed or if he would even survive the surgery,” Jamie said. “But God protected him and he came out with flying colors. He did even better than they dreamed.” Months later, post-surgery, Jace was discharged home. But after contracting respiratory syncytial virus (RSV), human metapneumovirus (hMPV) and severe acute respiratory distress syndrome (ARDS), his pulmonary hypertension problems returned and required another hospital stay. “All of his issues compounded and it was a very scary situation,” Jamie said. “He also had severe sepsis and the vent wasn’t even holding him well. On top of that, I’m a mom of six kids. I can’t say enough about how wonderful Children’s was with my other kids while we were there. They weren’t just about Jace. They were about the whole family and that was amazing.” Jace spent over a year in the Pediatric Intensive Care Unit (PICU), much of that time in a medically induced coma. At least once a month for nine months he would have episodes that caused him to code, requiring his care team at Children’s to work with him for hours. “Each time he coded, he would end up coming out of it fine,” Jamie said. “Because of that, I just knew it wasn’t his time to go. The doctors gave it 100 percent with him. It was obvious they loved him very much and they gave him 100 percent. They go above and beyond the call of duty.” One of those doctors, Dr. Chrystal Rutledge, cared for Jace during much of his stay. “She was amazing,” Jamie said “Even after they would get him stabilized and the rest of the team would leave, she would sit over his bedside trying to problem solve. She’s just amazing.” For a while, every time Jace seemed stable enough to go home, he’d experience another setback. He spent months at Children’s between the PICU and pulmonary unit, and nearly a year and a half after being admitted, Jace finally showed enough improvement to return home. “Even when we weren’t sure, Jamie had the utmost belief he was going to make it. She knew it wasn’t his time yet and that we should keep working and she was right,” Dr. Rutledge said. “We really weren’t sure what was going to happen, but he persevered through it. It shows that sometimes, despite the treatments or things we do or don’t do, some kids just get better and Jace was one of those kids. He’s truly a miracle to us.” Jace does have some developmental delays and still uses a ventilator at night to assist his breathing, but the now 6-year-old doesn’t let it stop him. He explores, runs, and plays just like his siblings. “He is limited with what he can do, but he doesn’t care and he certainly doesn’t let it stop him from enjoying life to the fullest,” Jamie said. “Unless you were there in the hospital and saw him, you would never know what he went through. He had spent so long fighting for his life, and not only did he survive it, but he’s made so much progress and is doing very well. He reminds me every day that God can and does move mountains if we trust and believe.”