News : Seeking more miracles: Spencers tell Olivia\'s story at UNI Dance Marathon

Olivia dances with a UNI student at the Children's Miracle Dance Marathon.

Olivia Spencer's life began this way, with open heart surgery and 16 medications.

Kendra holds Olivia as she recovers from her most recent surgery, in April 2011.

Olivia wearing a mask to keep germs out of her system.

A nurse helps Olivia walk to regain her strength after an April 2011 surgery.

Olivia Spencer, with mom Kendra and brother Thomas at the event.

Olivia Spencer, of Vinton, with some of the UNI Dance Marathon organizers.

Olivia Spencer's miracle was on display at the UNI Dance Marathon, Feb. 25.

Olivia Spencer's life began this way, with open heart surgery and 16 medications.

Olivia today

The participants of the first-ever University of Northern Iowa Children's Miracle Network Dance Marathon saw a miracle with their own eyes on Feb. 25, as they watched Olivia Spencer laughing and twirling.

But Olivia will need even more miracles to keep her dancing in the future.

Olivia, the daughter of Steve and Kendra Spencer of Vinton, has a severe congenital heart defect known as Hypoplastic Left Heart Syndrome.

"This is the most complicated of all the heart defects," says her mother. "Simply put, this means Olivia was born with only half-a-heart. This heart defect can not be 'fixed;' surgeries just help us buy time until the next surgery or heart transplant, or whatever the future may hold."

And, says Kendra, the family does not know much about what the future has in store. She hopes that events like the Dance Marathon will help fund the research that will help children like Olivia have a better chance at a more normal future.

"The oldest known survivor of Olivia's heart defect is now 26 years old," she said. "Before then, 100% of babies born with Hypoplastic Left Heart Syndrome passed away within a week of being born."

The Spencers shared their story with the Dance Marathon crowd on Saturday. Kendra told the audience their efforts are helping many children like Olivia.

"This is why funding and research are so important," she said. "With medical advances that have been made in the past 30 years because of generous donations to The American Heart Association, Olivia is alive today. This gives me hope for Olivia's future. Although, it is very cloudy right now, we as a family can only hope that donations will continue allowing more research that will help Olivia survive into adulthood and be able to have a family of her own someday."

The photos of Olivia dancing with UNI students are a stark contrast to the photos of her in her first week of life, which show fresh surgical scars and multiple IV lines.

"After Olivia's first open-heart surgery she was on 16 different IV medications at one time," recalls her mom. "This was a very critical time in her recovery process, and at times, we did not know if we would be bringing Olivia home."

Kendra shared with Vinton Today some of the excerpts from her speech at the event:

When my husband Steve and I found out I was pregnant, we were thrilled. We were even more excited to find out at our 20 week ultrasound if we would be having a boy or a girl. But that excitement quickly turned to worry when we were told there may be something wrong with the baby’s heart. We were sent down to University of Iowa Children’s Hospital on May 7th, 2007 for further tests. It would end up being one of the longest, most devastating days of our lives. It was at this appointment that we learned that our unborn daughter would indeed be born with a heart defect. Not just a simple, fixable heart defect but the most serious and complicated heart defect diagnosed; hypoplastic left heart syndrome. The left side of her heart did not develop, leaving our precious child born with only “half-a-heart.”

Through our tears, anger, and disbelief, the doctors went over our options with us. We could choose to have our daughter undergo a series of 3 palliative surgeries, put our daughter on a transplant list after being born, or take her home and enjoy our time together, which would likely be a few days. Listening to the doctors talk about our options made us realize just how serious of a defect Olivia would be born with but we also knew we had to give her a chance. After many prayers, tears and research, we decided to do the series of three open heart surgeries. These staged surgeries wouldn’t fix the problems with her heart but rather they would change the way her heart pumped blood so she wouldn’t need her left ventricle. Instead of the right ventricle pumping blood to the lungs it would pump oxygenated blood from the lungs to the body, doing the work of the left ventricle. Essentially, Olivia would have half a heart. We left the hospital that day completely crushed. Our lives forward would never be the same or at least be anything like we had pictured only a few hours before.

Olivia was born on September 20th, 2007. I didn’t get to hold her. All Steven and I were able to do is glance at our newborn girl as she was whisked away. At 5 days old she underwent her first open heart surgery, the Norwood. Watching your child grow up in a hospital and recovering from major open heart surgery isn't something I would wish upon anybody. We gave Olivia over to the surgeon looking like a perfectly healthy little baby. Hours later she was brought back to the PICU looking nothing like we remembered. She spent 41 days in the hospital recovering from heart surgery and learning how to eat before we were able to go home. During this time she made many new friends at The University of Iowa Children's Hospital. We had regular appointments with physical and occupational therapy as well as visits from music therapy and child-life.

At 5 months of age Olivia had her second open-heart surgery. She recovered well and was released in only 5 days, a hospital record. However, Olivia did run into complications and was taken by ambulance back to the hospital. She remained there for an additional two months. In April of 2011, Olivia had her third open-heart surgery. She did very well with surgery, but developed a pleural effusion and an infection. Olivia spent almost a month in the hospital recovering from this last planned surgery.

Needless to say, our family has been through quite a lot in the past four years. Having such a wonderful hospital and volunteers has helped make this experience more pleasant for us. We were able to enjoy arts and crafts, game rooms, snacks, and massages all thanks to donations made by The Children's Miracle Network and Dance Marathon.

The Spencers were invited to participate in the Dance Marathon after Olivia's April 2011 surgery.

"After all of our wonderful experiences throughout Olivia's hospital stays, we were excited to be a part of this," Kendra said.

Olivia was also chosen as the Survivor of the Year for the Linn County AHA Heart Walk. See her Heart Walk page HERE.

The family also went to Disney World, in December, courtesy of the Make-A-Wish Foundation.

To see a small clip of Olivia in action, here's a link to KCRG's video of the dance event, Olivia is toward the end.