Jagger Nathan with his parents Justin and Torie leaving Children’s Nebraska Hospital on Oct. 10, 2023.Photo:Bonnie Ryan/Children’s Nebraska
Bonnie Ryan/Children’s Nebraska
His stay ended on October 10, 2023, when dozens of members of his care team lined the hallway cheering and clapping as the 18-month-old used a gait trainer to literally walk out of his hospital room and head home.
“He’s outdone all of our expectations,” says one of his physicians,Dr. Camille Hancock Friesen, pediatric cardiothoracic surgeon at Children’s Nebraska. “When he went home, there was a lot of celebrating.”
Jagger’s parents are now sharing their son’s story to send hope to other parents of preemies.
“Never give up,” says Torie, 35. “Advocate for your kiddo, and don’t ever give up hope.”
Torie and her husband Justin tell PEOPLE exclusively that there were no issues during Torie’s pregnancy. Everything seemed to be going well — her prenatal appointments and ultrasounds were normal.
“I was so scared,” Torie remembers. “We had no idea what to do.”
Jagger was born at 7 a.m. on April 9, 2022, weighing 3 lbs., 11 oz. He did not have Down’s Syndrome, but he was diagnosed withCHARGE Syndrome,a genetic condition that impacts various parts of a child’s body including the heart. It affects about one in 8,500 to 10,000 newborns each year.
“It turned our world upside down. You think you’re going to have a perfect healthy born child. You have that dream of everything’s-going-to-be-perfect. You have the name and the clothes. Then you’re just going through your day-to-day life and it changes on a 180,” says Justin, 36. “You feel like you’re up against the world.”
Torie got to hear Jagger cry before he was immediately transported to the NICU, where his parents thought he would stay for six to eight weeks. They never imagined he would live at the hospital for 548 days.
Over the next few months, the parents experienced a huge “amount of fear,” says Torie. There were times that Jagger would hold his breath and turn blue and go into cardiac arrest. In May, he had a brain bleed, then his oxygen levels started dropping and there was a new problem with his heart.
Although doctors were able to put an emergency stent in Jagger’s heart, he kept having blood clots and brain bleeds. “They told Justin and I that he wasn’t going to make it,” Torie recalls.
Adds Justin, “Doctors had to put in a bigger stent than they anticipated, and said if that didn’t work, they were out of options.”
“Honestly, they were very shocked that he lived," Torie says. “When you’re told your son’s going to die, it’s horrible. But then, an hour later, they come up and say, “He made it. We don’t know how, but we’re going to try to keep him alive.”
Jagger was transferred from the NICU to the Cardiac Care Unit, where the couple thanked god for keeping their son alive, Torie says. “And giving us a miracle,” her husband adds.
Jagger had his first open-heart surgery in June 2022, and a second in July, when surgeons performed a biventricular repair on his heart.
“That surgery was complex,” Torie says. “It was a big risk. With that heart surgery, it either works or it doesn’t.”
Fortunately, a surgeon who specializes in the procedure, division chief of pediatric cardiothoracic surgeryDr. Ram Kumar Subramanyan, had just started working at Children’s Nebraska and was able to complete the procedure successfully. Jagger now has a “fully repaired heart,” Torie says.
The couple says that despite the numerous health scares, they refused to ever believe their son wouldn’t make it.
“God helped us a lot, but when you’re in that and you see a little kid fighting as hard as Jagger fought, that every day gave me motivation to keep fighting and do everything,” Justin says.
Jagger leaving Children’s Nebraska on Oct. 10, 2023.Bonnie Ryan/Children’s Nebraska
During Jagger’s hospital stay, his family’s sheep farm relocated from Geneva, Nebraska, to Chapman, Kansas. Jagger is now home in Kansas, where his family raises about 500 sheep.
“He’s a spitfire,” Torie says of her son. “He’s so strong.”
“He’s definitely a fighter,” his father says. “His pain tolerance is through the roof.”
Moving forward, they say they aren’t anticipating any more heart surgeries. While Jagger suffers from hearing loss and poor vision, glasses will likely help.
“I just want him to live a good happy life," Torie says.
Because each case of CHARGE Syndrome is different, doctors don’t really know what the future holds for Jagger. But his heart is fully repaired.
“I hope to never see him in the operating room again,” Dr. Hancock Friesen says. “The sky is the limit for this child."
source: people.com
