After 18 Months in a Nebraska Hospital, Toddler Finally Goes Home: ‘Don’t Ever Give Up Hope,’ Mom Says (Exclusive)

Torie Nathan’s water broke in April 2022, two months before her son’s due date. Her son, Jagger Raymond Nathan, spent 548 days at Nebraska Children’s Hospital, becoming the hospital’s longest-serving patient. During that time he had seven surgeries, including two major open heart surgeries.

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 walker to literally walk out of the hospital room and head home.

“He exceeded all of our expectations,” says one of his doctors, Dr. Camille Hancock Friesen, a pediatric cardiothoracic surgeon at the Nebraska Children’s Clinic. “When he went home, there was a lot of celebration.”

Jagger’s parents are now sharing their son’s story to give hope to other parents of premature babies.

“Never give up,” says Torie, 35. “Advocate for your child and never lose hope.”

Jagger’s doctors and nurses lined the halls to say goodbye on October 10, 2023.

Bonnie Ryan/Children’s Nebraska

Torie and her husband Justin tell PEOPLE exclusively that there were no problems during Torie’s pregnancy. Everything seemed to be going well – her prenatal exams and ultrasound were normal.

So they were shocked when her water broke two months earlier. At the hospital, Torie realized something was wrong when the ultrasound took too long. “I knew something was up,” she says. The doctors noticed that something was wrong with the baby’s heart. They told her that she might have Down syndrome.

“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 syndrome, but was diagnosed with CHARGE syndrome, a genetic condition that affects various parts of a child’s body, including the heart. It affects one in 8,500 to 10,000 newborns every year.

“He turned our world upside down. You think you will have a perfectly healthy baby born. You have this dream that everything will be perfect. You have a name and clothes. Then you’re just going through your day-to-day life and it turns 180,” says Justin, 36. “You feel like you’re up against the world.”

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The baby was taken to an incubator and a breathing tube was inserted. “I stood by him through it all,” says Justin, recalling the child’s vital signs dropping. “It was terrifying,” he says.

Torie heard Jagger crying before he was rushed to the NICU, where his parents thought he would stay for six to eight weeks. They never imagined that they would live in the hospital for 548 days.

Over the next few months, the parents experienced a tremendous “amount of fear,” Torie says. There were times when Jagger would stop breathing, turn blue and go into cardiac arrest. In May, he had a brain bleed, then his oxygen levels began to drop and a new heart problem appeared.

Although doctors were able to put an emergency stent in Jagger’s heart, he kept having blood clots and bleeding in his brain. “They told Justin and I it wasn’t going to work,” Torie recalls.

Justin adds: “The doctors had to put in a bigger stent than they expected and they said if that didn’t work, they had no options.”

But that day – which the Nathans assumed would be the worst of their lives – actually turned out to be the best day as their son surprised everyone by staying alive.

Bonnie Ryan/Children’s Nebraska

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“To be honest, they were very shocked that he survived,” says Torie. “When they tell you that your son is going to die, it’s terrible. But then, an hour later, they come up and say: “He made it.” We don’t know how, but we will try to keep him alive.”

Jagger was transferred from the NICU to the cardiac unit, where the couple thanked God that their son was alive, Torie says. “And giving us a miracle,” adds her husband.

Jagger had his first open-heart surgery in June 2023, and his second in July, when surgeons performed a biventricular heart repair.

“That operation was complex,” says Torie. “It was a big risk. With that heart surgery, it either works or it doesn’t.”

Fortunately, a surgeon who specializes in the procedure had just started working at Nebraska Children’s Hospital and was able to successfully complete the procedure. Jagger now has a “completely repaired heart,” says Torie.

The couple says that despite numerous health scares, they did not want to believe that their son would not make it.

“God helped us a lot, but when you’re in it and you see a little kid fighting as much as Jagger fought, it gives me the motivation every day to keep fighting and do everything,” says Justin.

Jagger leaves Children’s Nebraska on October 10, 2023.

Bonnie Ryan/Children’s Nebraska

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During Jagger’s hospital stay, his family sheep farm moved from Geneva, Nebraska to Chapman, Kansas. Jagger is now at home in Kansas, where his family raises about 500 sheep.

“He’s a spitter,” Torie says of her son. “He’s so strong.”

His mother describes him as a happy, active baby.

“He’s definitely a fighter,” his father says. “His pain tolerance is through the roof.”

Going forward, they say they don’t expect any more heart surgery. While Jagger suffers from hearing loss and poor vision, the glasses will likely help him.

“I just want her to live a happy life,” Torie says.

Jagger will become an older brother in March. His mother is pregnant with a boy. The Nathans underwent extensive testing and were told by doctors that there was only a 1% chance that Stryker would have the same health problems as Jagger.

Because every case of CHARGE syndrome is different, doctors don’t really know what the future holds for Jagger. But his heart was completely repaired.

“I hope I never see him in the operating room again,” says Dr. Hancock Friesen. “The sky’s the limit for this kid.”

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