An International Falls teen is being remembered for the impact he had on the lives of so many people following his untimely death last month.
Carter Herberg was only 18 when he died Dec. 28, 2020, after complications associated with an intestinal surgery. In the days following his death, Carter’s family and others who knew him said he taught so many lessons and left lasting impressions, and did so without ever speaking a word.
“He touched so many people and taught us so many things,” said Carter’s mother, Jodi Herberg.
Carter lived with severe cerebral palsy and limited physical mobility, necessitating the use of a wheelchair. He was continuously challenged with other health issues, always bewildering doctors by beating sometimes slim odds, his older sister said.
“Carter was constantly defying the odds,” said Cassie Thompson. “He did that throughout his entire life.”
Carter’s family sat down with The Journal this week to recall Carter’s life and what the days following his unexpected death have looked like. Joining Jodi and Cassie were Carter’s father, Jeff Herberg, younger sister Bailey Herberg, as well as Cassie’s husband, Ryan and their 7-month-old daughter, Mila.
The absence of Carter in their lives is fresh, difficult and unfamiliar. After nearly 19 years of intense caregiving, Jodi said they’re forced to develop a different normal.
“It’s quiet,” she said. “It’s really hard.”
Wanting to remember their son and give back to the community that has rallied around Carter since he was born, the Herbergs are working to develop criteria for a scholarship in memory of Carter for the Falls High School class of 2021, his graduating class.
“We’re not quite sure of what the qualifications will be,” Jodi said. “We’re working with (school officials) on that.”
In addition, money donated in Carter’s name will purchase something for Heidi Thompson’s special education resource room at the school.
“We wanted to do something for a place that was very dear to our son,” Jodi said of the classroom. “He loved going to school... he loved Heidi and her class. He loved his paras and riding the bus. He was always so happy when he got to be at school.”
The outpouring of love and support from people has shown through messages and visits to the family, Jeff said, but also through their generosity in giving toward the scholarship.
“We wanted to do something that was meaningful for the kids who gave so much to Carter,” he said. “People have really responded to that and have been very generous. This community has been amazing and we appreciate it.”
The family is noticeably close, which Carter was given some credit for. As soon as someone would start telling a story about Carter, another would fill in with missed details. There was laughter mixed with tears as the group recalled the young man who they said had a smile that could light up a room.
“That smile,” Jodi said, tearing up and taking a deep breath. “It was the best smile.”
As the owners of Sha Sha Resort, the Herbergs are well known in the community, as was Carter. If they weren’t working, Jeff and Jodi were rarely seen without their son and said if Carter couldn’t be included in something, they didn’t do it.
“Our lives revolved around Carter and making sure he was always included in what we did,” Jodi said. “Our friends and family realized things had to be done at our pace with Carter, and if it didn’t involve him, we didn’t do it.”
And that’s how it was from the beginning.
The early years
Like most things Carter did, his entrance into the world was memorable.
Jodi’s water broke six weeks before her due date, in March 2002. At the time, she, Jeff and Cassie were living in a home on Grindstone Island. They made their way across the lake toward shore, making a quick stop to pull a vehicle out of the ditch on the way to the hospital.
“I was doing OK and Jeff had time to help,” Jodi said with a laugh.
Upon arrival to the hospital, because the baby was premature, Jodi was flown to Duluth where Carter Bradley was born March 10. Because the newborn was having difficulty breathing and only weighed around 4 pounds, he spent 32 days in the pediatric intensive care unit.
“They knew the minute he was delivered... he needed assistance,” Jeff said, adding six days after he was born, Carter developed an infection in his belly button, creating the longer-than-anticipated stay.
Nothing about Carter’s first months were out of the ordinary. While Jodi recalls some signs of developmental delays, medical teams told the couple they wouldn’t know if Carter would have any special needs before he was about 2 years old.
“I remember coming home from the hospital at his 6-month checkup, and we didn’t talk,” Jeff recalls. “They gave us some information that he might have cerebral palsy.”
It’s a concept no parent can prepare themselves for and the Herbergs were no exception. But they held out hope.
“(Doctors) said if he did have cerebral palsy, it would be a mild case,” Jodi said.
As Carter matured and developed, the Herbergs said it became clear their son was not progressing on track.
In the mix, Carter developed hydrocephalus, a condition in which an accumulation of cerebrospinal fluid occurs within the brain. Carter underwent one of eventually 27 surgeries to have a shunt placed in his head. Jodi explained the shunt connected to a tube that drained spinal fluid to the stomach.
“He was still very young and doctors again told us he should develop to be a normal child, he just probably wouldn’t be able to play contact sports,” Jeff said. “But it was another wake up call our son wasn’t going to be normal.”
When Carter was 18 months old, he hit another obstacle – he wasn’t responding to sound. He was eventually diagnosed with auditory neuropathy, a hearing disorder in which the outer hair cells of the cochlea are present and functional, but sound information is not transmitted sufficiently by the auditory nerve to the brain.
As a result, Carter was the youngest patient to receive a cochlear implant, which is a surgically implanted device to assist in hearing.
“Most kids have two cochlear implants put in, but he had a shunt on one side of his head, so Carter only got one,” Jeff said.
“It made sense to us,” Jodi said. “But when he started hearing sound, he’d start turning toward the sound and knocking (the magnetic sound processor) off. It was always a constant issue.”
Around the time Carter turned 2 years old, the Herbergs said the cerebral palsy diagnosis eventually came knocking.
“You can never be ready to hear those words,” Jeff said.
Carter’s neurologist at Gillette Children’s Specialty Healthcare said the toddler’s brain was more developed than most kids with cerebral palsy, especially for the severity Carter was displaying.
“Doctors couldn’t say cerebral palsy is actually what he had,” Jeff said. “But he had what he had.”
The recollection of those early days triggered memories of feeling frustrated.
“We’d be having all these doctors appointments and meetings with specialists and I’d leave crying every time,” Jodi admitted.
So, the family decided to change their mindset. Instead of focusing on what Carter couldn’t do, they nurtured and highlighted what he could do.
“It was so hard and so heart wrenching to watch this little boy who couldn’t communicate with us,” Jodi said. “We wanted doctors to tell us what he could do and we learned to go from there.”
Cassie agreed. “That became our family’s focus.”
Horseback riding, downhill skiing, swimming in Rainy Lake and going on a cruise were just some of the many things Carter did while surrounded by those who loved him most. Whether it was a member of his family or another caregiver, the goal to help Carter live life to the fullest was achieved over and over again.
Bailey included her older brother on making TikToks and sometimes just brought him into her room to listen to music.
“That meant more to him than she’ll ever realize,” Cassie said of her younger sister’s efforts to bond with Carter. “The rest of us got this one track mind while care giving for him, and it was nice that Bailey could bring in what she did, even if it was simple.”
Jodi, a noticeably proud mom, agreed.
“Carter loved her,” she said smiling at Bailey. “Any attention she gave him, he just loved. There were things she could do with him that the rest of us would do, but it meant more coming from her.”
“He communicated with his emotions,” Jeff chimed in. “He did more communicating with his emotions than most people who can talk.”
Defying odds, again
Carter started showing signs of pain late in July, signaling the need to be evaluated by doctors.
“His eyes were shut and he was doing a lot of moaning,” Jodi recalled.
Carter was flown to Duluth July 25 for surgery, and doctors were unsure of what they were up against.
“We were told they didn’t know if he was going to make it through surgery,” Jeff said. “The doctors didn’t know what they were going in to find... They encouraged us to get family down there to basically say goodbye.”
It was discovered that the shunt tube, which was put in place when Carter was 6 months old, had wrapped around his intestines, cutting off blood flow.
“Doctors had to cut 85 percent of his intestines out,” Jodi said.
The phenomenon is rare. Carter’s neurosurgeon said it occurs in about one in 2 million patients. Again, Carter defied odds.
“He survived the surgery,” Jeff said. “He proved them all wrong, again.”
Changes in Carter
While Carter eventually returned home after a month in the hospital, the days to come were full of pain and discomfort.
“Carter wasn’t Carter anymore after July 25,” Jodi said. “We lost that boy that day. While he was here and he looked OK, he was just different. He had more pain than we ever could see or help him with. It was all internal... but he did still give us a smile every once in awhile.”
Pain medication stopped working and Carter returned to the hospital in November, this time for 23 days.
“We finally got to the point where we were doing our best to keep him comfortable,” Jodi said. “We eventually lost it and said we needed to get home with Carter so he could be with his family for Christmas.”
Jodi said her son gave his family one final gift on Christmas Eve and Christmas Day. After months of sleepless nights and days full of discomfort, Carter was comfortable and acting more like his normal self as the family’s holiday traditions were carried out.
“It was one of the best Christmases,” Jodi said.
Unfortunately, things changed drastically Dec. 26. Late that evening, Carter started giving his parents signals something was wrong. After a sleepless night, his breathing mirrored what it had in July.
“We walked into the (emergency room) and they called the life flight within minutes,” Jeff said.
Carter’s family was able to be at his side when he later died in the hospital Dec. 28.
“It still doesn’t seem real,” Jeff said. “I wake up and Jodi isn’t in bed and I think I missed helping with something for Carter. Then I remember he’s gone.”
Grieving and healing
Carter’s neurologist often referred to Carter as his most complicated pediatric patient. While Jeff said he doesn’t call the label a proud parent moment, it put into perspective the level of care Carter needed throughout his life.
Regardless of the medical hurdles he had to overcome, Carter spent his life educating doctors on rare procedures, teaching his family patience, and helped his peers recognize compassion for those who may look and act different.
Jodi credited Carter’s classmates for always showering her son with kindness.
“Every year from preschool through sixth grade, I’d go into Carter’s classroom while he was growing up to tell the kids about Carter and who he is,” she said. “I let them ask questions and I gave them information about why he looks different. It helped them understand.”
Now, while keeping memories of Carter close at all times, Jeff and Jodi said they plan to spend time focusing on Bailey, who often felt left out growing up as a healthy child. They also plan to continue family dinner nights every Sunday and enjoy watching Mila grow.
“2020 was a hard year,” Jodi said. “But Mila has been such a blessing and Carter loved her... We just need to learn a different normal now.”