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STORY BY KARA SCHWEISS | PHOTOGRAPHY COURTESY OF CHILDREN'S HOSPITAL & MEDICAL CENTER
metroMAGAZINE • The Spirit of Omaha
A FAMILY’S JOURNEY
the rainbow with
THE CONFIDENCE THAT COMES WITH A FOURTH PREGNANCY, ERIC AND ANNE DEE WEISDORFER THOUGHT IT WOULD BE FUN FOR THEIR THREE DAUGHTERS TO JOIN THEM AT THE ROUTINE 22-WEEK ULTRASOUND APPOINTMENT.
Newborn Avery’s first surgery would now be scheduled to take place at Children’s, a full two and half hours away from their home in Shelton, Nebraska, meaning Anne Dee would have to give birth in Omaha, but the Weisdorfers were willing to make any sacrifice necessary to give their baby girl a chance at life.
The girls were excited, eager to discover whether they would remain a band of sisters or welcome their first brother. But the atmosphere of joy “I’m such a big planner and this was so turned abruptly serious when the beyond my control. It was so hard not exam revealed a possible heart knowing how long I was going to be abnormality. there and leaving my other kids here,” Anne Dee Weisdorfer said. In the days following, the couple’s anxiety intensified. A perinatologist confirmed that “something” was definitely wrong with Avery’s heart, and referred them to a pediatric cardiologist who delivered the devastating news that their fourth daughter had hypoplastic left heart syndrome, a rare disorder that is invariably fatal if left untreated. The cardiologist dispassionately presented them with four options: transplant (infant hearts are seldom available); a series of still-experimental surgeries with uncertain outcome; hospice care only; or traveling out of state for a late-stage pregnancy termination! Without any words of ~ ANNE DEE WEISDORFER sympathy or comfort, she gave them a pamphlet and sent them on their way.
when i found out about rainbow house, it took away a lot of those pressures, a lot of those worries and ‘what-ifs’.
“Here we are barely paying our mortgage every month. Now I have a baby on the way who may or may not “It took Eric and me about two minutes live. I’m obviously going to have to to decide that we owe this to her, that we quit my job for a while; I ran a daycare have to try, and then we didn’t talk for the rest of the hour and a half ride home.” out of my home. How do I pay to live in a hotel for two months? It didn’t take me long to realize I would never The Weisdorfers then turned to be prepared for what would happen to Children’s Hospital & Medical Center to us because I just didn’t know.” find a more compassionate cardiologist. They immediately chose surgery.
a legacy of hope Another “heart mom” told her about the Carolyn Scott Rainbow House, a facility located near the hospital that provides accommodations and meals to out-oftown families of Children’s patients for a $10 nightly fee that is waived for those who simply can’t afford it. “When I found out about Rainbow House, it took away a lot of those pressures, a lot of those worries and ‘what-ifs’,” Weisdorfer said. “I didn’t have to worry about how I was going to pay for it or where I was going to go and if it could accommodate all of us.” Rainbow House was founded in 1983 by the determination and vision of Carolyn Scott, who passed away that same year. “Years ago, when told that Omaha was too small of a community to have a family care facility, she thought differently,” Scott’s daughter, Sandy Parker, explained. “There was a great group of Omaha leaders that believed and supported the project then and today. Although Mother’s life was short, to have her name and legacy live on attached to the Rainbow House—we could not be prouder as a family to have her remembered through the lives of children.” Ellen Wright, chairman of Children’s Hospital & Medical Center Foundation’s board, said she admires Scott’s unyielding determination to bring Rainbow House to fruition. CONTINUED