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Healing the tiniest of hearts

Janequa and Olivia share a close moment.

Olivia Moore is a dynamo who loves to dance. In the words of her mom, Janequa Harris, she’s a “16-year-old trapped in the body of a 4-year-old.” Born with serious heart problems, Olivia is thriving thanks to her strong spirit and the life-saving care she received from the skilled team at Children’s Memorial Hospital’s Heart Center.

Before Olivia was born, prenatal tests indicated that she had heterotaxy syndrome, resulting in malformations of her heart due to an incorrect left or right “sidedness” of its structure. To make matters worse, she also had complete heart block, a disorder of the heart’s electrical system that caused her heart to beat too slowly. While each condition is serious, only 20 percent of babies born with both disorders survive beyond their first birthday, according to Sabrina Tsao, MD, Olivia’s cardiologist.

During the first half of her pregnancy, Janequa lived in St. Louis, where her doctors recommended she terminate her pregnancy because they were doubtful Olivia would survive for long. Janequa, a Chicago native, returned home to get some additional medical opinions. She was referred to Children’s Memorial, whose pediatric heart program is ranked 12th in the nation by U.S. News & World Report.

Janequa consulted with fetal heart specialist, Nina Gotteiner, MD, in the hospital’s Institute for Fetal Health, as well as with Carl L. Backer, MD, head of the Division of Cardiovascular-Thoracic Surgery and the A.C. Buehler Professor of Surgery. Janequa received encouraging news: while there were risks involved, they felt Olivia could be helped by the implantation of a mechanical pacemaker to regulate her heartbeat and a series of surgeries for her complex heart disease.

“I was so fearful after what the doctors in St. Louis had told me,” says Janequa. “So it was a great relief to hear that they were willing to try to fix Olivia’s heart so she could live a relatively normal life.”

Olivia was born at Prentice Women’s Hospital in downtown Chicago, and was immediately transported by ambulance to Children’s Memorial, where on her second day of life a surgical team led by Backer successfully repaired a narrowing of her heart’s major arteries to the body and implanted a pacemaker.

“When I first saw Olivia after the surgery, she was all bandaged up and swollen, with tubes everywhere,” says Janequa. “It was very hard to see her that way, but the doctors and nurses are so wonderful. I didn’t doubt for one minute that they were doing everything they could for her.”

Olivia spent two weeks in Children’s Memorial’s Neonatal Intensive Care Unit (NICU), with her mom and grandmother spending most of the time at her bedside. Once home, Olivia thrived, though she needed to use a feeding tube for her first two years to consume enough calories to grow properly, and received speech, occupational and physical therapy. She underwent her second surgery at 9 months of age to repair her heart, making it into a “normal” four-chamber heart, and had a new pacemaker generator implanted when she was 3.

“Olivia has surprised us every step of the way in how well she’s done,” says Dr. Tsao. “She’s a very spunky little girl.”

Children like Olivia with serious heart problems will benefit greatly when Children’s Memorial’s new facility, Ann & Robert H. Lurie Children’s Hospital of Chicago, opens in 2012 in downtown Chicago, adjacent to Prentice.

Currently, children who undergo heart surgery at Children’s Memorial are housed on at least two different floors during their stay. At Lurie Children’s 36-bed Regenstein Cardiac Care Unit, children will remain in the same unit from admission to discharge.

“For children like Olivia with complex anatomies, it will be very beneficial for them to have the same surgical, medical and nursing team looking after them from start to finish,” says Dr. Tsao. “This will enhance care by allowing patients and families to build a relationship with a single team of caregivers.”

The all-private rooms will have ample space to accommodate complex technology, and there will be improved amenities and comfort for families staying in the child’s room overnight. Lurie Children’s will also be connected by bridge to Prentice – a huge benefit to mothers like Janequa with newborns needing immediate surgery.

Few who meet Olivia would ever guess she’s been through so many challenges in her young life. While she may need further surgery later this year and will need a new pacemaker implanted every few years, Olivia can participate in the same activities as other kids her age, although she’ll need to refrain from participating in contact sports, which rules out a career in the NFL. But Janequa says Olivia has another path in mind.

“For a long time Olivia said she wanted to be a doctor,” she says. “When I would ask why she would say, ’Because doctors saved me.’ That’s changed. Now she says wants to be a ‘mommy.’”