When Tysen Barton wasn’t feeling well on the morning of his football playoff game, his parents thought it was just nerves. But when his coach, who is also his dad, Matt Barton, looked over and saw his quarterback with his helmet in his hand, quietly hunched over and with tears in his eyes, he knew there was something else going on. Tysen’s mom, Barb Barton, wrapped a blanket around him, and Tysen sat out the first half of the game. He made it onto the field for the second half, but he just didn’t feel right.
“Tysen is not a kid who complains, so we knew something was definitely wrong, but we weren’t sure what it was,” Matt recalls.
The Bartons kept a close eye on their 11-year-old son that weekend in November 2010, thinking he might be fighting the flu or something else because of a rising fever. Even their dog, Peyton, seemed to sense Tysen’s distress when she jumped on his bed and seemed to be telling everyone that something was wrong with her buddy.
As he progressively got worse over the course of a few days, the Bartons called an after-hours service and spoke to the on-call nurse, a St. Louis Children’s Hospital nurse who urged them to take Tysen to the hospital from their home in the Alton, Ill., area.
And then their lives suddenly changed forever.
For the next 17 days, the Bartons rode a roller coaster of emotions as their son overcame endocarditis, an infection of the heart, which resulted from a coarctation of the aorta. This occurs when a part of the aorta is narrowed, affecting the body’s blood circulation.
“Tysen had the kind of heart disease that can develop at any time, but it is not very common. I suspect he may have been hypertensive for a while and had a heart murmur that had not been detected. He was a pretty sick boy,” says R. Mark Grady, MD, pediatric cardiologist at St. Louis Children’s Hospital. “I encourage all parents to make sure their children have routine physical exams that always includes an accurate blood pressure measurement.”
In addition to fighting the infection, Tysen had days of agonizing pain when he tried moving and experienced renal dysfunction. He was finally cleared to go home for a short while but returned to St. Louis Children’s Hospital in late January 2011 for balloon angioplasty to repair the coarctation using a specialized catheter to implant a stent. During this procedure an aneurysm was detected, and the stent also helped to repair that, Dr. Grady explains.
“To me, as a parent, the hardest thing to watch was Tysen getting sicker and sicker by the minute and there was nothing I could do about it,” says Barb, the mother of four sons, including Tysen, now 12; Steven, 21; Ethan, 18; and Cayden, 8. “We have such heartfelt gratitude for Children’s Hospital. They gave us our son back, and they did it with so much dedication and compassion for what we were going through. Every person who worked in that hospital, from the doctors to security to the housekeeping staff, every single person had compassion for my little boy and my family.”
“We really connected with everyone who cared for Tysen on his unit, 8 West. They took such good care of Tysen and all of us,” Matt says. “It means so much when you see nurses get emotional about your child and show how much they care. We feel like they are a part of our family now, too.”
The Bartons say there were many moments and people who touched their lives, from nurse Tiffany who made cookies for Thanksgiving to Tysen’s physical therapist, Clay, who never gave up, to the security guard who hugged Barb one day when she found her crying and told her it would be OK because she was in the right place.
“I really don’t know how everyone does what they do at the hospital every day and are able to go back and do it again the next day,” Barb says. “We are so grateful for everyone at Children’s. We also can’t say enough about our family and friends at home and how much we appreciate the teachers and staff at Tysen and Cayden’s school, North Elementary, who were so supportive.”
Tysen has his own thoughts about being at St. Louis Children’s Hospital. “I didn’t like it, of course, but I’m thankful for the hospital and everyone who helped me,” he says. “I really liked my PT, Clay, and my doctors — Dr. (Ericka) Hayes, who likes the Indianapolis Colts, like me, and Dr. Grady because he knows how to talk to me.”
After Tysen’s blood pressure returned to normal, Dr. Grady cleared him to play football last season. But he says Tysen will need to be re-evaluated every year going forward and that football may not be something he can play forever. Tysen also plays baseball and is an honor roll student who received an Excellence in Achievement Award from his school following his illness.
“Tysen is a special kid who is going to do something special in this world after going through this,” says his dad.
He’s already started showing his appreciation to St. Louis Children’s Hospital when he asked his friends, who visited him during his hospitalization, to make donations to the hospital instead of giving him presents for his 12th birthday on Sept. 23, 2011. His parents offered to match whatever monetary amount was collected. Tysen’s friends donated $650. They donated the $1,300 as part of 92.3 WIL’s Cornbread’s Kids Crusade fundraiser held in December at the hospital.