It was in April of 2022 that Torie Nathan’s water broke, which was two months before the due date of her baby son. When her son Jagger Raymond Nathan was admitted to Children’s Nebraska Hospital, he remained there for a total of 548 days, making him the hospital’s longest term patient. Over the course of that time period, he had seven surgical procedures, including two major open-heart operations.
As the 18-month-old boy used a gait trainer to practically walk out of his hospital room and travel home on October 10, 2023, scores of members of his care team lined the corridor, applauding and clapping. This marked the end of his time in the hospital.
One of his doctors, Dr. Camille Hancock Friesen, who is a pediatric cardiothoracic surgeon at Children’s Nebraska, states that “He has outdone all of our expectations.” When he returned home, there was a great deal of jubilation and laughter.
It is now the parents of Jagger who are sharing their son’s tale in order to inspire other parents who are dealing with preemies.
“Never give up,” torie, who is 35 years old. Your child deserves to be advocated for, and you should never give up hope.
PEOPLE has received an exclusive statement from Torie and her husband Justin stating that there were no complications throughout Torie’s pregnancy. Her prenatal visits and ultrasounds were both within the usual range, so it seemed like everything was going swimmingly.
It came as a surprise to them when her water broke two months earlier than expected. Torie became aware that anything was amiss while she was at the hospital and an ultrasound was taking an excessive amount of time. She said, “I knew something was up,” and she was right. The doctors have seen that there seems to be a problem with the baby’s heart. She was informed that there was a possibility that he had Down syndrome.
At that moment, Torie recalls, “I was so scared.” “We had no idea what direction to take.”
On April 9, 2022, at seven o’clock in the morning, Jagger was born weighing three pounds and eleven ounces. It was determined that he did not have Down syndrome; nevertheless, he was diagnosed with CHARGE Syndrome, which is a genetic disorder that affects a number of different sections of a child’s body, including the heart. On an annual basis, it affects around one in every 8,500 to 10,000 births.
“Our whole world was flipped upside down by it. When you think about having a kid, you imagine that it will be wonderful and healthy. The fantasy that everything is going to be wonderful is something that you have. The name and the clothing are in your possession. According to Justin, who is 36 years old, “then you’re just going through your day-to-day life and it changes on a 180 degree turn.” “It seems as though you are fighting against the entire world.”
After the infant was transferred to an incubator, a breathing tube was put into the baby’s trachea. “I stood right beside him through it all,” recalls Justin, describing how the baby’s vitals were decreasing throughout the course of the whole period. “It was terrifying,” he tells me.
Torie was able to hear Jagger scream before he was taken straight away to the neonatal intensive care unit (NICU), where his parents anticipated that he would remain for a period of six to eight weeks. They had no idea that he would be in the hospital for a continuous period of 548 days.
Over the course of the subsequent several months, the parents went through a significant “amount of fear,” according to Torie. At certain points in time, Jagger would stop breathing, causing his skin to become blue and causing him to fall into cardiac arrest. During the month of May, he had a bleeding in his brain, after which his oxygen levels began to decrease, and he also developed a new issue with his heart.
Jagger continued to get blood clots and brain bleeds despite the fact that the medical professionals were able to insert an emergency stent into his heart. As Torie recounts, “They told Justin and I that he wasn’t going to make it,” he and Justin were informed.
Justin also says, “Doctors had to put in a bigger stent than they anticipated, and said if that didn’t work, they were out of options.”
But that day, which the Nathans had anticipated would be the worst day of their lives, turned out to be the finest day of their lives since their kid astonished everyone by remaining alive.
“To tell you the truth, they were very surprised that he was still alive,” adds Torie. If you find out that your kid is about to pass away, it is a terrible experience. However, when an hour has passed, they come up to you and say, “He has succeeded.” We have no idea how, but we are going to make an effort to keep him alive while we can.
According to Torie, Jagger was moved from the Neonatal Intensive Care Unit (NICU) to the Cardiac Care Unit, where the parents expressed gratitude to God for preserving their son’s life. “And having a miraculous effect on us,” her husband continues.
The first open-heart surgery that Jagger had was in June of 2023, and he underwent a second one in July of the same year, during which physicians performed a biventricular repair on his heart.
“That operation was a difficult procedure,” Torie explains. It was a significant wager. There is no way to know whether or not that heart surgery will be successful.
Fortunately, a surgeon who specializes in the technique had just begun working at Children’s Nebraska, and he was able to successfully execute the treatment successfully. According to Torie, Jagger has a “completely repaired heart” at this point.
According to the parents, they refused to ever accept that their kid would not survive, despite the several health scares that they had.
Justin adds, “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.” Jagger fought with a lot of determination.
During the time that Jagger was in the hospital, the sheep farm that his family owned and operated moved from Geneva, Nebraska, to Chapman, Kansas. Jagger has relocated to Kansas, where he and his family live and herd about 500 sheep.
Torie describes her kid as exclaiming, “He’s a spitfire.” “He is so powerful.”
As a newborn, he is described by his mother as being joyful and lively.
His father is quoted as saying, “He is most certainly a fighter.” “His capacity to tolerate pain is through the entire roof.”
As for the future, they have said that they do not anticipate doing any further cardiac surgery. Given that Jagger has both hearing loss and low eyesight, it is probable that glasses will be of use to him.
As Torie puts it, “All I want is for him to have a happy and successful life.”
This coming March, Jagger will be able to call himself a big brother. It is expected that his mother will give birth to a son. A great deal of testing has been done by the Nathans, and the physicians have informed him that there is only a one percent possibility that Stryker would have the same physiological difficulties as Jagger.
Due to the fact that every instance of CHARGE Syndrome is unique, medical professionals are unable to accurately predict what the future holds for Jagger. But his heart has been completely restored.
Dr. Hancock Friesen expresses his confidence by saying, “I hope to never see him in the operating room again.” There is no limit to what this youngster may do.
