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New Prague toddler living with congenital heart defect
New Prague Mayor Chuck Nickolay declared this week Congenital Heart Defect Awareness. The inspiration for the proclamation isn’t old enough to vote.
Cameron Chase Rannow, age 3, is the son of Virgil and Shawna Rannow of New Prague. While he seems as active as any 3-year-old, Cameron was born with only half a heart and has already had four open heart surgeries and will likely have another before he turns 4. His parents found out about his condition while Cameron was still in the womb.
"We were pretty shocked," said Shawna.
After an ultrasound in Mankato, their doctors decided to schedule tests at the University of Minnesota. When asked why, the Rannows were told the doctors wanted to get a better picture since Cameron was moving around so much. At the university, Virgil and Shawna were told that doctors thought something was wrong. Tests found that Cameron had Hypoplastic Left Heart Syndrome (HLHS). The left side of the heart cannot pump blood to the body properly. HLHS is considered rare, it is a heart defect that affects 1 in 8,000 to 1 in 14,000 births. At the time, his chances of survival ranged from 50 to 80 percent.
"We were told as long as he’s inside (the womb) he’d be OK, but once he was born, don’t plan to hold him for long," said Shawna.
Cameron was born at the University of Minnesota Riverside. "I got to hold him for less than five minutes," said Shawna.
While Virgil went to get their daughters Desiree and Megan, now ages 14 and 9 respectively, Cameron was whisked off to the neonatal intensive care unit. He was given a breathing tube and medication to help his heart. After two days he was transferred to pediatric intensive care. His first surgery was a Norwood hybrid stint at eight days old when his heart was the size of a walnut.Cameron was discharged at five weeks.
His surgeries have included the redirecting of veins and the widening of his aortic arch. The surgeries won’t fix his heart, but make it work the best it can.
"His immune system is weaker," said Virgil who works a foreman job for Chard Tiling & Excavating Inc. out of Belle Plaine.
"Even a cold can put him in the hospital," said Shawna.
In a way, Cameron realizes he’s different from his family. He points to his scar on his chest and calls it a zipper. He still tries to keep up with his sisters. "He thinks he can do everything they can do, but he can’t," said Shawna.
The weather, too hot, too cold or too humid, can make it hard for him to breathe. "He’ll want to go out and play like the rest," said Virgil.
Shawna noted Cameron is already recognizing he has limits. "He knows when to come in and rest."
Cameron has to have his blood pressure taken twice a day, he takes blood thinner and goes in for a cardio test every six months. His development in learning some things has been slowed, although he’s finally in his own room.
Shawna admits she still checks on him at night. "I can’t see myself not doing that, ever."
Another big step is when Cameron begins pre-school at Holy Trinity Lutheran Church.
Getting through it all, Virgil said they get help. "A little from family, but a lot of stress."
"And a lot of prayer," said Shawna.
The couple said they get more help from friends whose children have had heart defects. They celebrate accomplishments together. There’s also the program Beads for Courage. Cameron gets one for surgeries, going in for checkups. He has more than 1,000 beads, which have been made into five necklaces.
Cameron’s family has been approved by the Make a Wish Foundation to go to Disney World in Florida. They also plan to go to Key West and see the sea turtles.
The Rannows said that Cameron will likely need a heart transplant by age 25. The doctors speculate by that time gene therapy will allow for the growing of an organ from his cells.
"He won’t have to be on the list as long," said Shawna.
"Or need to take rejection pills," added Virgil.
The family is thankful and glad for the good days, because they realize the next one may not be so good, so they hope for more good days.