News : Heart Ambassador: Olivia Spencer to be featured in Heart Walk commercials

Flower girl: Olivia Spencer at a recent wedding.

Olivia Spencer will be featured in a Linn County Heart Walk commercial on area TV stations.

Olivia, at age 4, appears healthy despite her heart condition.

These t-shirts are available from the Spencer family.

Nearly every place she goes, Olivia Spencer is a celebrity. The Vinton four-year-old was a favorite at the UNI Dance Marathon in February. She’s already been to the Magic Kingdom, where she met the characters from “Lion King.” And on August 4, she will be the Heart Ambassador for the Linn County Heart Walk.

Soon, many eastern Iowans will see Olivia on TV, as she encourages viewers to help support that event.

That commercial, filmed last week, shows Olivia outside, playing. The voice the viewers will hear during that commercial is that of Olivia’s mom, Kendra:

“My hero is strong, she is brave. My hero is courageous, she is wise… My hero is my daughter. She is why we walk,” Kendra says.

The commercial briefly tells Olivia’s story, in her mom’s words:

“During the past four years our daughter Olivia has spent over 130 days at The University of Iowa Children's Hospital. She has endured three open-heart surgeries as well as five heart catheters, and is a stroke survivor. Olivia was born with a severe congenital heart defect known as Hypoplastic Left Heart Syndrome (HLHS). Simply put, this means she was born with only half a heart. This heart defect is the most complicated in the CHD family and there is no ‘cure.’ Olivia’s only chance for survival was a series of three palliative surgeries. Needless to say, our family has been through quite a lot in the past four years. Many parents of children with CHD do not know what the future may bring. Our only hope is that the medical advances we’ve seen in the past 30 years will continue to amaze us in the years to come. This is why spreading hope and raising awareness through fundraising are so important to our family. Without these funds, research would not be able to continue. Please join us this year for the Linn County Start! Heart Walk."

Hospital-free for nearly a year, but still uncertain about the future

To most people, Olivia now appears as a healthy young girl. She can run and play like other children, although she will tire more easily. At home, with her parents and younger brother Thomas, Olivia’s favorite game is “Doctor.”

“At one time or another, all of us – even the dog – have been one of her patients,” said Steve.

Life has been nearly normal for the Spencers for the past year. Unlike the first three years, when Olivia spent hundreds of days in the hospital, Olivia has been at home, as healthy as a child born with half a heart can be.

But, says Kendra, Olivia will still eventually need a heart transplant.

“Some people think that now that her surgeries are over, that everything is fine,” she says.

That’s not the case.

Olivia’s condition is so rare, and there are so few survivors, that there is really now way for the Spencers to predict what comes next, or how Olivia’s heart will function as she continues to grow.

Her oxygen saturation level is at 85 percent, says Steve, who explains the diagrams that show how Olivia’s heart looked when she was born, and the surgeries that allowed her to survive.

“The left half of your heart is designed to do the most work,” says Steve. “It’s not the half you want to be born without.”

A generation ago, Olivia would have had virtually no chance of surviving such a serious heart defect. But the experimental procedures done on patients in the 1980s led doctors to understand how the “Norwood” surgery could keep patients like Olivia alive.

Kendra knows that many moms like her lost their children to the disease.

But, she says, those parents gave the doctors permission to use what they had learned to perfect the procedure.

“Those parents said, ‘At least my child was able to help someone else in the future,’” says Kendra.

Kendra also knows that having Olivia with her now is a miracle. After one of her surgeries, when she was 8 months old, Olivia developed complications and her lungs began to fill with fluid.

Kendra took her to one cardiologist, who did not find any problems.

"They thought I was just 'Crazy Heart Mom'" she recalls.

But soon Olivia's symptoms got worse; she was not eating and could not sleep on one side.

The family saw another cardiologist.

"By then her oxygen saturation level was down to 50 percent," recalls Kendra. "The cardiologist told us it is a miracle she is still alive."

The Spencers have signed release forms, authorizing the sharing of Olivia’s medical records for research purposes. They also volunteered to undergo genetic studies, to see if there is perhaps a cause for such defects. (Thomas, the couple’s younger son, was born with a healthy heart.)

Urgent need

Olivia’s success story is just one reason, says Kendra, that heart research funding is so important.

The other reason is that there are children born with heart defects who have died from their ailments.

Already, the Spencers have attended four funerals of children they met while Olivia was in the University of Iowa Hospitals. The most recent was just a few days ago.

Every funeral is a heart-breaking reminder that there is still a very big need for more research, more funding, more events like the Heart Walk.

In addition to recruiting members for Olivia's Heart Walk Team, her family is selling t-shirts in honor of Olivia. For more information, contact Kendra Spencer at klm479@gmail.com