Fair   22.0F  |  Forecast »

Over the Rainbow

A family's journey with Children's Hospital & Medical Center and The Rainbow House

 

From One Family’s Journey to Wine, Women and Shoes

“Here we are barely paying our mortgage every month. Now I have a baby on the way who may or may not live. I’m obviously going to have to quit my job for a while; I ran a daycare out of my home. How do pay to live in a hotel for two months?” Anne Dee Weisdorfer said.  “I don’t know what we would have done without Rainbow House.”

A Family’s Journey

With the confidence the 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. 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 turned abruptly serious when the exam revealed a possible heart abnormality.

In the days following, the couple’s anxiety intensified. A perinatologist confirmed that “something” was definitely wrong with the baby’s heart, and referred them to the 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, improbable because infant hearts are seldom available; a series of still-experimental surgeries with uncertain outcome; palliative care only; or traveling out of state for a late-stage pregnancy termination. Offering no words of sympathy or comfort, she then gave them a pamphlet on their baby’s condition and sent them on their way.

The Weisdorfers chose surgery (and to seek a more compassionate cardiologist). “It took Eric and I about two minutes do decide that we owe this to her, that we have to try, and then we didn’t talk for the rest of the hour and a half ride home,” Anne Dee Weisdorfer said.

Newborn Avery’s first surgery would have to take place at Children’s Hospital & Medical Center, 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.

“I’m such a big planner and this was so beyond my control. It was so hard not knowing how long I was going to be there and leaving my other kids here,” Anne Dee Weisdorfer said. “Here we are barely paying our mortgage every month. Now I have a baby on the way who may or may not live. I’m obviously going to have to quit my job for a while; I ran a daycare out of my home. How do pay to live in a hotel for two months? It didn’t take me long to realize I would never be prepared for what would happen to us because I just didn’t know.”

 

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-of-town 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 off, 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, said. “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.

“She was not well at the time that she decided to do this and she was just not going to take no for an answer. Isn’t that a beautiful commentary on women?” Wright said. “She saw a need and knew it had to happen and she was going to do everything she had to do to make this happen. And it’s still here!”

Roger Lewis, executive director of the Foundation, says the facility has not only endured, but the need for its services has increased substantially three decades later.

“The need for that facility has continued to grow,” he said. “We expanded it about 10 or 12 years ago and we need to expand it again to meet the need for families.”

“We think that Mom would be sad to see how much the need has grown for this facility, yet proud of what Omaha and Children’s Hospital & Medical Center have done to continue providing the support of families with medical needs,” Parker said.

 

Community Support

“The reality is that Children’s, from its inception in 1948, has provided services that are not covered by insurance,” Lewis explained. “From the beginning, also, we’ve had the commitment that we do not deny services to any child based on inability to pay. We’ve maintained that commitment since 1948, so that costs money, too. We raise money to offset those expenses so we can continue that commitment.”

Thus, community support is essential, he said.

“It’s very unusual to have a freestanding children’s hospital and we are one of the smallest communities in the country to have one. We have a real gem here. There are hospitals that have pediatric wings or what we call ‘hospitals within a hospital’, but it’s the freestanding children’s hospitals where you see the clinical progression, the research being done that really forwards pediatric care,” Lewis explained. “It continues to be more and more important to have that philanthropic support as we look to changes in how health care is delivered and how health care is paid for.”

Children’s service area has also expanded over 60 years, Lewis said.

“We are a regional medical center outreaching beyond Omaha. Fifty percent of our patients are from outside of Omaha. For some of our programs, we have patients that come from all over the country,” Lewis said. “That’s where Rainbow House ties in.”

“The Rainbow House is such a special place but people don’t hear about it because it’s traditionally for people who live 60 miles or further from the hospital,” Wright said.

 

Wine, Women and Shoes

With an objective to bring awareness and much-needed funding to Rainbow House, Wright is a co-chair (with Erin Pogge) of the first Wine, Women & Shoes fundraiser that will take place the evening of Friday, May 10, at Happy Hollow Country Club. The event is a copyrighted concept that combines wine tasting; a marketplace featuring shoes, handbags and accessories; hors d’oeuvres and desserts; and a silent auction.

“What a fun idea for a women’s event, totally different that anything Omaha has seen. Cinderella is proof that a new pair of shoes can change your life!” Parker, an honorary event co-chair, said. “Good wine, great women and a pair of fun, new shoes—what better combination could you ask for?”

“With this event, we’re trying to get to a different group of people, a different market. Children’s does an extremely successful gala in November which is huge and very much a part of the development approach of the hospital,” Wright said. “But this event, it’s going to fill a niche. I didn’t go to traditional corporate support, so it’s a different audience, a different group. Our goal is to have 300 women of different age groups.”

By bringing in a younger demographic, fundraisers can be ongoing and evolve over the years, she explained.

“Rainbow House was not created to make money for the hospital or anyone else and it never will,” Wright said. “The expenses for the house have certainly risen as the need has increased. We just felt strongly that we needed to have an event every year to generate operating dollars for the House and for special projects if need be.”

 

A Bright Future for Avery

This May, soon after Wine, Women and Shoes takes place, three-and-a-half-year-old Avery Weisdorfer will be admitted to Children’s to undergo the final surgery in a series of three.

“I would have never, ever dreamed she’d be in that tiny little handful of kids who have done so well. Her cardiologist has said, and her surgeon as well, ‘this is how we would want every case to be’,” Weisdorfer said. Her voice still catches when she recalls how her aunt, a retired nurse, reacted when she first heard of Avery’s condition.

“My aunt said she went home and told her husband, ‘These are the babies I used to rock. These are the kids I used to hold until they died’,” Weisdorfer said. “Avery is very, very lucky she was born in 2009.”

And her family is grateful that Rainbow House is available to them once again. Weisdorfer said that Avery’s sisters Kendall, Paige and Regan, now 13, 11 and 8, still talk about the kid-friendly atmosphere filled with toys and books, the warm and supportive staff, and even the great meals.

“We have this whole city of activities to see and do but they wanted to stay and play at the Rainbow House,” Weisdorfer said. “I don’t know what we would have done without Rainbow House.”
 

Add your comment:
Edit Module
Advertisement
Edit ModuleEdit ModuleEdit Module
Advertisement