After 548 days at Children’s Nebraska, Jagger goes home for the first time!
Jagger Nathan—born with a rare and serious genetic disease—spent the first 18 months of his life hospitalized at Children’s Nebraska.
Torie Nathan, Jagger’s mother, had no idea there were any complications during pregnancy. It wasn’t until her water unexpectedly broke at 31 weeks that she was rushed to an emergency department in Omaha where an ultrasound revealed Jagger’s congenital heart disease.
Shortly after Jagger was born on April 9, 2022, he was immediately transported to Children’s Nebraska where genetic testing revealed his CHARGE Syndrome diagnosis—an extremely complex syndrome that often involves extensive medical and physical difficulties such as birth defects and problems with the heart, trachea, esophagus and more. The Nathans expected a 6–8 week Neonatal Intensive Care Unit (NICU) stay when they arrived, but that turned into 18 months between the NICU and Cardiac Care Unit (CCU).
“We were so excited to have Jagger in our lives, but we were also so scared of the unknown,” says Torie.
For Jagger, two of the most concerning challenges he faced were his heart defect and a problem with the connection between his food and wind pipes.
“Jagger was born with a hole in his heart,” explains Ram Kumar Subramanyan, M.D., Ph.D., division chief of Cardiothoracic Surgery at Children’s Nebraska. “Additionally, the left side of his heart, which is intended to pump blood to the body, was underdeveloped. The pathway for blood to flow from his heart to the body was also small.
Upon admission, Jagger needed a breathing machine to support his lungs. He also needed medication to ensure his body received enough blood supply to stay alive. “Given all the complexities that Jagger was born with, his chances of survival were very low,” says Dr. Subramanyan.
At any given time, Jagger’s medical team consisted of every specialty from Cardiology, Cardiothoracic Surgery, Gastroenterology, Neurology to Pulmonology and Ophthalmology. “Jagger has been checked over from head to toe in every direction possible,” says Jagger’s father, Justin Nathan.
During his 18-month stay at Children’s Nebraska, Jagger underwent numerous surgeries and needed multiple interventions, medication and support. He was placed on a feeding tube and underwent a tracheostomy so he could continuously be supported by a breathing machine.
When Jagger was 15 months old, tests showed that his heart had grown enough to undergo the final repair he needed. Dr. Subramanyan, an expert in converting complex heart conditions into two-ventricle circulation, worked alongside Children’s Nebraska cardiothoracic surgeon Camille Hancock Friesen, M.D., to close the hole in Jagger’s heart and connect the heart properly to the lungs and body, which resulted in normal circulation and a fully healed heart.
“Jagger’s progress represents the best medical care that modern technology has to offer. Every single team member gave their best to ensure he had the best possible outcome,” says Dr. Subramanyan. “His parents were also integral to the success, partnering with the medical team to ensure things went well.”
After experiencing every emotion from joy to frustration to sadness for 548 days, Torie and Justin received word from their medical team that Jagger was healthy enough to go home for the first time in October.
“Our time at Children’s was amazing. Although it was much longer than we ever imagined, it was worth every second to have our little boy at home with us,” says Torie. “I thank God every day for the many doctors, nurses and team members at Children’s Nebraska and all they did for us. They are truly amazing people, and we are forever grateful to them.”
