Charlotte Mae Stevenson has known virtually nothing of the outside world during the first seven months of her life.
Born Feb. 24 to Emili and Sam Stevenson of Fort Atkinson, Charlotte (aka “Charlie”) has called Children’s Hospital of Wisconsin in Milwaukee home — first the neonatal intensive care unit and more recently, Center 4, a non-critical cardiac unit.
The problems are several congenital heart defects, one known before birth and another three discovered after she was born.
In just these last seven months, Charlie has endured cardiac arrest and a stroke and, as Emili explained, even discussions by her parents and doctors when they might have to decide where to draw the line in saving the young girl’s life.
Through it all, though, the infant survived, and then out of the blue, thrived. She is scheduled to come “H word” (home) on Thursday, Oct. 11, in time for a benefit ride to help cover Charlie’s medical expenses Sunday, Oct. 14.
As Emili explained on Charlotte’s Facebook page, “Go Red For Charlotte,” they can’t actually use the word for leaving the hospital.
“Mommy, daddy, my nurses and my doctors refuse to say the “H word” around me because then I try to pull stunts to keep everyone on their toes,” wrote Emili on Charlie’s behalf Sept. 25.
A planned heart transplant, which Charlie eventually will need, is on hold due to bleeding risks and concerns, but Emili said Monday that her daughter is finding a way to move forward.
“She’s just come so far,” Emili said, adding that Charlie is stubborn ... and a fighter.
Charlie was born with four separate congenital heart defects — pulmonary atresia with an intact ventricular septum (meaning the ventricle that is supposed to pump blood is closed), left coronary ostial atresia, right ventricular-dependent coronary circulation and proximal right coronary atresia.
“Her coronary arteries aren’t wired right,” Emili said back in April.
Charlie underwent open-heart surgery at just 20 days old, with doctors implanting a Blalock-Taussig (BT) shunt to help allow blood flow from her heart to her lungs. She was slated for further surgeries and then placed on the transplant list for a new heart in March. Doctors labeled her high priority for the transplant due to the fact that the defects aren’t truly correctable through surgery.
Since then, though, life got complicated. One day in late June, Charlie ended up agitated as her heart struggled to keep up with the stress it was under. She first went into an episode of bradycardia, where her heart slowed down, and then cardiac arrest.
“They did CPR for 45 minutes,” before Charlie finally came back, Emili recalled.
Doctors placed the infant on ECMO — extracorporeal membrane oxygenation — to keep her body going, and Charlie underwent her second open-heart surgery July 3 to receive a bi-directional Glenn shunt to improve her cardiac function.
At one point, Emili recalls being asked to contemplate just how far she and Sam wanted to go to save Emili.
“We knew that we didn’t want her being hooked up at the hospital to be her whole life, but we had never really, truly decided,” she said. “It felt impossible to even think about, and we really never came up with a true and clear answer.
“By the time we were really able to handle sitting down to think about it, she was doing better and being our little miracle baby,” Emili added. “She just started to thrive, out of the blue all of a sudden.”
While the heart transplant still is the end goal, when and how that occurs remains to be seen.
“Because of the strokes and the brain bleeds, they are afraid the transplant would cause more bleeding to the brain damage,” Emili said.
Right now, the plan is to maintain Charlie with the bi-directional Glenn, and then have her undergo another surgery when she is 3 or 4 years old.
She will stay on the transplant list, though, maintaining the time she has served on the list, but as status seven (on hold).
For now, what Emili does know is that her daughter likely will have developmental delays.
“They really don’t know what her life will be like,” Emili said. “They don’t know if she’ll talk, or when she’ll talk. They just can’t tell when she’ll walk or if she’ll walk.”
In the meantime, though, Charlie has stabilized and is doing “pretty well.” She’s undergoing therapy at the hospital, enjoying the occasional outside stroll and even playing like a normal 7-month-old at times.
“Not only is she a content baby, we’re content,” Emili said. “We’ve come so far from where we were.”
There is another point of uncertainty, however. Since being born by cesarean section at Froedtert Hospital Birth Center, Charlie never has been home — and her parents have yet to receive a medical bill.
When they do, Emili said, they know it will be high. Sam still is working full time for a lawn-care company in Lake Mills and Emili works part time as a waitress at North Shore Inn, but family and friends have been helping the couple with everything from providing food and gas cards to watching the couple’s 2 ½-year-old son, Grayson.
“Just the support in the community that we’ve had, it’s been really great,” Emili said. “The support that we have is incredible.”
While a small benefit was held June 29 on the day of Charlie’s cardiac arrest, Sunday, Oct. 14 is going to be the real deal. North Shore Inn will help serve as hosts for “Charlie’s Chase to Conquer CHD,” a motorcycle ride that will start at noon at North Shore Inn, 1835 North Shore Road, Fort Atkinson, at noon.
From there, riders will go to Hijinx in Fort Atkinson, Lou’s Riverview in Jefferson, through Johnson Creek to Crawfish Junction at Milford, then to Aztalan Inn at Aztalan, and finally to the end destination — Lake Mills’ American Legion Post 67, where there will be food, raffles and a silent auction.
Registration is $30 per motorcycle (single or double), with kickstands up at 12:45 p.m. All participating riders will receive a “Charlie’s Chase” T-shirt, and those T-shirts also will be for sale following the ride at the American Legion.
Non-riders are welcome at the American Legion following the ride at about 4:30 p.m.
Chris McNelis, a friend of both Sam and Emili (whom he calls Emma), said he decided to get involved and organize the benefit ride after his mother put one together for another friend. He also is helping with Charlie’s benefit.
McNelis said he heard about the story around a campfire with friends, and then researched what was going on with his friends’ daughter.
“For me, my mom had done a benefit ride before,” he explained. “I wanted to do the same thing, just for a different cause. I ran it past Emma, and she thought that’d be a great thing to do.”
McNelis already has gift certificates and other contributions from area businesses for the silent auction, but “more would be better,” he said. To contribue, visit the “Go Red For Charlotte” Facebook page, or contact McNelis at (608) 290-8113.
Former Daily Union reporter Alexa Zoellner contributed to this story.