DULUTH — Grant Benz sat on the floor at the Cloquet High School gym looking awfully bored, his back against the wall as his Rock Ridge teammates took on Pierz Feb. 7 as part of a wrestling quadrangular.
Benz wanted to be out there wrestling but instead was wearing street clothes due to knee soreness. It was hard for him to sit and watch and cheer.
“We all want to win,” he said.
For Benz, though, this is nothing new. The Virginia sophomore has been dealing with health issues his entire life.
Benz was diagnosed with Amniotic Band Syndrome (ABS). This wasn’t discovered, however, until after his birth, a birth which shocked his parents and the Grand Rapids medical team, sounding the alarm. Grant was born with myriad birth defects, including his face not being properly formed.
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“When Grant was born, I saw him briefly but my wife never saw him,” said Garrett Benz, Grant’s father. “He went straight into the helicopter and straight to Duluth.”
Amniotic Band Syndrome is a rare condition that affects unborn babies. According to Johns Hopkins Medicine, ABS occurs when the inner layer of the placenta, called the amnion, is damaged during pregnancy. It has been reported in as few as one out of every 15,000 live births. It is not genetic.
Thin strands of tissue (amniotic bands) form that can tangle around the developing fetus, restricting blood flow and affecting the growth of body parts, leading to congenital deformities of limbs. In some cases the strands tangle so tight they can amputate fetus limbs.
“As you’re developing, the bands start cutting off parts,” Garrett Benz said. “We didn’t know any of this. He was just born, and then we found out when he came out.”
Garrett and his wife, Sarah, lived in Grand Rapids at the time. After Grant was airlifted from Grand Itasca Hospital in Grand Rapids, he remained at St. Mary’s in Duluth until he was stable enough to be taken to Minneapolis Children’s Hospital to start his journey.
The situation was so dire his parents initially didn’t name him.
“Grant was in the ICU for a week where we didn’t know if he was going to live or die,” Garrett Benz said. “Grant has basically been doing surgeries since he was born until now, and he’s got more to go.”
Listening to Garrett Benz describe all of Grant’s surgeries — more than 40 of them — he sounded like the front desk clerk at an orthopedic clinic leafing through the monthly roster.
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Grant Benz has had surgeries for broken fingers and to lengthen leg bones and his toe. His right leg was born backwards, so it had to be turned around. Grant has had tendons, including his Achilles, cut multiple times.
When Grant was born he had two eyes but only a bottom lip. The family, however, soon met the late Dr. James Sidman, a former wrestler who was already semi-retired but embraced the challenge with empathy. Sidman told them he could put a smile on Grant’s face, and he did.
Through craniofacial reconstruction surgery, where Grant was put in a drug-induced coma, the frontal lobe of his skull was cut off and the sides of his facial skull structure were ground and refitted. His eyes were adjusted to line up and give him a better facial structure.
“They gave him a full nose,” Garrett Benz said. “They used inserts for his nose bridging and created a top lip for him. He also had a bone from his hip removed to build a top gum line for teeth and created a palate. He’s got a lot of parts and pieces in him, lots of rods and screws.”
The two worst bands were on the one leg, where he has poor circulation because it affected his arteries.
“Much of what’s been done has been exploratory,” Garrett Benz said. “At one point we were wondering if we were going to do a lengthening of the one leg or just do a prosthetic, because he doesn’t have a lot of flexibility in his joints because they’re so stiff from pulling tendons and stuff. But his legs work so far so we’d rather keep it that way. We’ve been trying to keep everything working instead of going the alternate route, so at this point he doesn’t need anything. He functions like a normal person.”
The other band that was devastating was the one that wrapped around one of his hands and head, burying his hand in his face and hindering the development of both. Add it all up, the way Grant is today is nothing short of a miracle.
Grant’s case was so unique doctors compiled a case study on him, with reports outlining all his surgeries that could be used for future reference.
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“When we did this craniofacial reconstruction, it had only been done like five times in the world before then,” Garrett Benz said. ‘A lot of what they did was trial by error.”
From a distance, Grant just looks like a regular teenager.
Naturally right-handed, Grant uses his left hand/arm because it’s stronger. On his left hand he has a thumb and a pinky and a few nubs.
Grant’s right arm, meanwhile, is quite a bit shorter than his left. He doesn’t have much of a wrist or elbow, but that’s something hardly anybody notices. On that hand, he has three fingers and a thumb.
Believe it or not, Grant said in a way, it gives him an advantage.
“It’s actually not as hard as you think,” he said. “With my smaller arm, I get a lot more leverage than a normal arm to be honest.”
Teammate and classmate Dutch Hedblom agreed.
Dutch wrestles at 126 pounds, and Grant wrestles at 132 or 138 pounds, so they see plenty of each other in practice.
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“It’s always a good match. Grant can get you into some situations, and he can get himself out of some situations, that other kids just can’t,” Hedblom said, drawing a laugh.
Grant said most people do a double take when they first see him, but he said that’s common nature and he is used to it. He doesn’t let it bother him.
To his friends, he’s just Grant.
“Just like everyone, I just do my best and try my best,” Grant said. “I feel like I’ve gotten better at just blending in and being normal, and there’s no difference with my friends at all.”
Hedblom has known Grant since grade school and said his schoolmates were always good about treating Grant as just another kid.
That’s not to say they don’t realize he has overcome more hurdles than most.
“Grant is always really positive. You never hear him complain,” Hedblom said. “He’s definitely an inspiration. He inspires the rest of us every day. If he can do it, why can’t you?”
Grant Benz comes from a long line of wrestlers that includes his grandpa, Dennis Benz, the retired Virginia police chief and Rock Ridge’s head wrestling coach.
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Garrett Benz, who took third at state a couple times, serves as an assistant coach under his father. Garrett’s brother, Dustin Benz, Grant’s uncle, took third and sixth at state and went on to wrestle at North Dakota State.
Garrett has three sons, Gavin, who had 155 career wins and is now attending college at Minnesota, Grant, and then Gage, an eighth-grader who wrestles at 106 pounds.
It’s a wrestling family.
“Yeah, it is,” Dennis Benz said. “Who knows? Maybe there’ll be another generation after that.”
Grant, who wasn’t able to wrestle last year, is 14-9 this season in helping the Wolverines to an 18-6 record.
“What happened and how far Grant has come, it really is quite amazing because the kid has had close to 50 surgeries,” Dennis Benz said. “He’s pretty tough. He can hold his own, I’ll tell you that.”
Garrett Benz said everywhere the Wolverines wrestle, opposing wrestlers and coaches approach him, wanting to know his story.
“And that’s awesome,” Garrett Benz said. “Just like any other kid, Garrett could just sit and say, ‘No, this is too hard, but he succeeds at it.’ Sarah and I think Grant is an exceptionally wonderful kid and we’re proud that he’s an inspiration to others. It’s been a long process.”
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Grant Benz has been wrestling for about 10 years and doesn't mind being considered an inspiration.
“It was hard learning to wrestle at first, and just like everything else it takes getting used to,” he said. “But don’t let it stop you. Just do what you want to do and push through everything. Just keep moving forward, and if you keep moving forward, anything is possible.”
Despite missing a lot of school over the years dealing with surgeries, he knew that each surgery meant one step forward. Despite often playing catchup on assignments, Grant Benz maintains a 3.6 grade-point average.
Oh, and he can drive a car and is a good tennis player. He uses his left hand for that, too.
“Grant plays tennis against kids that are … you know, ‘perfect’ kids,” Garrett Benz said. “And he’s out there with multiple leg surgeries, one leg shorter than the other, one arm shorter than the other, a pinky and a thumb, and he beats these kids. It’s amazing. And he can’t run very well, you know? (Garrett laughed) He’s just really good at adapting because he was born that way.”
It didn’t hurt that two things — the two most important things — were born intact: Grant’s brain, and his heart.
The Trust Project
