Each year, the thousands of people line up in their cars to see the Blue Creek Christmas display leave a donation in appreciation of the work that Aaron Maue and his family put into the computerized light display that fills his whole neighborhood.
And each year, the Maues pass on that money — typically well over $10,000 — to an organization that benefits someone they know.
This year the Blue Creek Christmas beneficiary is the Stead Children’s Hospital at the University of Iowa.
And, The Someone They Know is Ellie Schmidt.
The daughter of Kevin and Heidi Schmidt of Center Point, Ellie was born with HLHS — hypoplastic left heart syndrome. She has spent much of her life in the hospital. By age five, she had three major surgeries and nine catheterizations. Now age 11, she has spent over 100 days of her life in the hospital.
When Ellie was born, pediatric heart specialists almost immediately performed a procedure to open a valve in her heart. She had her first surgery, known as the Norwood procedure, to reroute the blood flow to her lungs when she was a week old.
The CDC page explaining HLHS defines it as a life-long medical condition in which the left side of the heart does not effectively pump blood to the rest of the body; and declares that even infants that undergo successful surgeries are not cured: “Infants with hypoplastic left heart syndrome may have lifelong complications. They will need regular follow-up visits with a cardiologist to monitor their progress. If the hypoplastic left heart syndrome defect is very complex, or the heart becomes weak after the surgeries, a heart transplant may be needed. Infants who receive a heart transplant will need to take medicines for the rest of their lives to prevent their body from rejecting the new heart.”
For Ellie, surgeries during her first days were successful, but she will need continual medical care as she grows, says her mom.
“She will need cardiac catheter surgeries as she grows into adulthood because she has stents in her aorta and right pulmonary artery,” Heidi explains. “We have no plans of open heart surgery at this point. A transplant may be necessary in the future but nobody knows when or if that will happen. It’s wait and see. Right now she is stable and that is all we ever ask for.”
Heidi says generally Ellie has spent about a month in the hospital with each open heart surgery but typically just stays overnight after each cardiac catheter surgery.
“Her last cath was this summer, so we’re hoping not to need another until she is about 14,” she explains.
Heidi says the U of I medical community has become a second family to the Schmidts. She is also involved as a parent mentor for Heart Friends, a support group for families of children being treated for cardiac issues at the Stead Family Children’s Hospital.
“I match up new families with other families who have gone through similar experiences with their children,” Heidi explains.
If HLHS sounds familiar to Vinton readers, it’s because it is the same condition affecting Olivia Spencer of Vinton, who has been undergoing similar treatments since she was born, and has been featured in many stories and fund-raisers. Olivia and Ellie met when they were babies, says Heidi, and the families have kept in touch as their daughters grow and face new challenges and procedures.
One of the 2012 Kid Captains
In 2012, Ellie was one of the children chosen to be Kid Captains for the U of Iowa football team. Earlier this year, she participated in a parade celebrating the 10th year of the Kid Captain program. The Kid Captains join the football team on the field and have become an important part of the new tradition of waving toward the children in the windows high above the stadium at the end of the first quarter of each Hawkeye home game.
Blue Creek interview
Aaron Maue records part of the program that holiday visitors see and hear each year at Blue Creek Christmas. This year, while announcing that the Stead Family Children’s Hospital is the beneficiary of all donations, Maue also interviewed Ellie, sharing part of her story.
“Ellie LOVED being a part of Blue Creek,” says Heidi. “We’ve gone every year since they started; it’s one of our holiday traditions.”
Donations can be left in a slot in a large wooden stocking in the driveway of the Maue home.
See a short video from 2012 about Ellie’s story at the U of I below: