Super Bowl wish comes true for boy
MORRISTOWN — For Bentley Barker, a Union Local Middle School student, the wish of a lifetime is about to come true.
Bentley’s love of football and his lifelong battle against a congenital heart condition led to his wish to go to Super Bowl LIX in New Orleans being granted by the Make-A-Wish Foundation. Bentley originally was told that his wish would be granted next year, but that changed on Jan. 23, when the Barker family of Bethesda gathered at West Texas Roadhouse in St. Clairsville. Although the family told Bentley they were meeting for his older brother Caiden’s birthday celebration, Bentley was the one who received the surprise of a lifetime.
Once Bentley arrived at the restaurant, he was presented with a giant box that said “You’re invited.” As he opened it, confetti spilled out and covered the table, revealing a large cardboard ticket — a replica of the real Super Bowl 59 ticket he has been awarded.
Bentley and siblings Paxton and Caiden; their father, Chad Barker; and mother, Chelsea Barker, will all be flown to New Orleans to participate in various activities leading up to the big game. Then, on Sunday, Bentley and Chelsea get to go to the Super Bowl.
“We’re going down there for five days and have multiple things throughout (the week) that the NFL are doing for us,” Chelsea said.
Bentley has struggled with health concerns since birth. On July 11, 2011, Chelsea Barker gave birth to twins Bentley and Paxton with Paxton arriving first. Bentley followed and within seconds of his arrival, he was rushed to the nursery due to lack of oxygen.
“He was born via C-Section, and he came out blue. They were unaware that he had a congenital heart defect,” Chelsea recalled. “He was born in Wheeling Hospital and coded several times there, and then they were finally able to get him stable enough for a life flight to Pittsburgh. Once he was there, they realized that he was born with transposition of the great arteries.”
According to the Mayo Clinic, transposition of the great arteries is a serious, rare heart problem in which the two main arteries leaving the heart are reversed. The condition is present at birth, which means it’s a congenital heart defect.
Chelsea said once Pittsburgh Children’s Hospital discovered the condition, Bentley was placed on extracorporeal membrane oxygenation for roughly eight days, which allowed him to become stable enough for open heart surgery. The surgery successfully switched his pulmonary and aortic vessels at only 2 weeks old. He was able to go home a month after the surgery.
Chelsea said that at 4 months old when Bentley was starting to sit up on his own, she noticed he wasn’t using his right side.
“I noticed he wasn’t using his right side at all. I would put little toys over there, and he would reach clear across his left side,” she said.
She scheduled several CT scans and MRIs, which led to the discovery that Bentley had an anoxic brain injury from when he was in cardiac arrest for 25 minutes during his birth.
“The longest he was down for cardiac arrest was 25 minutes, but he was down numerous times which caused brain damage, so he had a stroke and then the stroke caused epilepsy,” Chelsea said.
She added that since he began having seizures at 6 months old, Bentley was in occupational and physical therapy for epilepsy. Following the seizures, he then would have episodes of losing consciousness, which prompted Chelsea to take him to several cardiologists. The external heart monitors they used on him weren’t able to detect why he was passing out.
“We did that for years and years … (before doctors) implanted a monitor, and within a couple weeks it showed his heart is just stopping randomly,” she said. “That was going on going into 2023, so he ended up back in Pittsburgh and they decided to go ahead and put a pacemaker in because they didn’t know why he was having the coronary spasms. They tried to treat it with medications, but it wasn’t doing anything really. So since they didn’t know why and couldn’t prevent it, they decided to go ahead and do the pacemaker so when it does do it, the pacemaker would kick in.”
Bentley got his first pacemaker in January 2023. Six to eight months later, Bentley was working out and came to Chelsea and showed her that his right arm was blue.
“They implanted the pacemaker on his right side because he’s left-handed. Because of the stroke, he has right side hemiplegia. So it took several months, but we figured out that where his pacemaker was it completely occluded his subclavian He had a massive blood clot right at his pacemaker,” Chelsea said.
The doctors found the blood clot after an ultrasound. The discovery led to multiple, risky surgeries. Doctors then replaced the pacemaker with a new one that is implanted directly into his heart instead of connecting to veins the way most pacemakers are.
“They put the battery pack in his belly so that they can change the battery. They last about 15 years,” Chelsea said. “It was a very rough recovery for him. He didn’t want to get out of bed and was just in a lot of pain, and he has a high pain tolerance because of everything that he’s been through since birth.”
In hopes of getting Bentley up and moving, Chelsea said she bribed him with Pittsburgh Steelers tickets, which worked. And now, the family is heading to the Super Bowl.
Bentley said that besides the game between the Kansas City Chiefs and the Philadelphia Eagles, he is most looking forward to the NFL Honors Red Carpet Awards Event that is hosted by musician and personality Snoop Dogg.
The family also will receive a private stadium tour with other children who received the trip from Make-A-Wish. They will get the opportunity to meet players from both teams and tickets to the Super Bowl Experience.
According to the NFL’s website, “The Super Bowl Experience will feature interactive games, star player autographs, photos with the Super Bowl Rings and The Vince Lombardi Trophy, and exclusive merchandise from the NFL Shop presented by Visa. It’s the ultimate Super Bowl Week event with fun for all ages.”
Chelsea added that while she and Bentley are at the Super Bowl, the NFL and Make-A-Wish provide an area for all of the family members not attending the game to have a watch party.
Although Bentley had a rough start to his life, he is incredibly passionate about sports and even plays basketball for Union Local Middle School. He said football is his favorite sport, but he isn’t allowed to play because of his medical condition.