Bonnie's Story

Published on September 30, 2016

Little Bonnie Gandee likes to be the boss. Even her 4-year-old brother, Wyatt, does what the 2-year-old says. “She’s a ball of energy,” her mother, Anna, said.

But Bonnie wasn’t in command of life right away. She was diagnosed with a congenital heart problem before she was even born.  A routine ultrasound for Anna revealed something might be wrong with her baby’s heart, and she was referred to University of Louisville Physicians for a fetal cardiac scan.

“At first it wasn’t real,” Anna said. “We thought they were just being overly cautious.”

With no specialists near her hometown of Pedro, Ohio, she drove to UofL Physicians’ pediatric cardiology office in Ashland, Ky., where through a telemedicine conference it was determined additional testing and consultation with an expert in fetal cardiology was needed.

She was then scheduled to see pediatric cardiologist Dr. Brian Holland in Louisville, where he diagnosed Bonnie with complicated congenital heart disease. He told the family she would need several surgeries to try to correct the problem.

'A serious condition'

“It was at that point we realized this is really happening,” Anna said. “It took my husband a little while to come to terms with it.”

Bonnie’s heart lacked the 4 chambers a normal, healthy heart has, and hers was essentially functioning with only one of the two main pumping chambers. With the very abnormal chambers in her heart, the blue blood in her heart mixed with the red blood, and the main artery leaving the heart was too narrow to carry the blood to the rest of her body. Soon after birth, she would need immediate and complex bypass surgery, to be followed by two other surgeries later in infancy and young childhood to correct the abnormalities she would be born with.

“It was a serious condition. It’s not the same as being born with one of the simpler and more common heart problems,” said Dr. Brad Keller of UofL Physicians, who is Bonnie’s regular pediatric cardiologist.

To help her better understand Bonnie’s condition, Anna said Dr. Holland made sketches for her. “It was a lot to take in, a lot to handle,” she said. “They can tell you everything is going to be fine, but it’s still scary.”

Heart surgery at 2 weeks old

Bonnie was born at Norton Hospital in Louisville and taken across the street to Norton Children's Hospital, where she was under the watchful eye of pediatric specialists and nurses in the neonatal intensive care unit. At just 2 weeks old, she was scheduled for her first of three surgeries with UofL Physicians cardiothoracic surgeon Dr. Erle Austin at the Norton Children's Hospital Heart Center.

The Heart Center, working with specialists from UofL Physicians, offers a full range of services for congenital heart defects as well as acquired heart disease, including everything from fetal cardiology to pediatric cardiac catheterization, electrophysiology and open heart surgery, including transplant. It is the only pediatric heart failure and transplant program serving Kentucky and Southern Indiana.

Bonnie’s first surgery was a big one, and would ensure she would be stable and healthy enough to undergo other surgeries as she got a bit older.

 “When they put the IV in, when it was time to take her back to surgery, that was the worst part,” Anna said.  “It was harder than seeing your newborn afterward with all the tubes and medicine and IVs.”

And with more surgeries needed, it wasn’t over for Bonnie or her family.

“At night was my worst fears, afraid that I wouldn’t hear her breathing,” Anna said. “There were a lot of long and restless nights.”

At age 6 months, Bonnie had a second surgery at the Heart Center to again redirect the blood flow in her body to prepare her heart and lungs for the third and (hopefully) final surgery. When she was almost 2, she had the third surgery, which finally allowed the red and blue blood in the body to stay in separate paths and not mix.

A chance to thrive

The surgeries were a success.

“In the 1980s, the chance of survival for a child like Bonnie would have been 20 to 30 percent,” said Dr. Keller. “Now, because of evolvements in technique, anesthesia and other factors, these types of surgeries can be up to 95 percent successful. We have a whole new group of patients that never survived before.”

Not only did she survive, she is doing “extremely well,” said Dr. Keller.

Bonnie now only takes only baby aspirin for her heart, and is able to enjoy normal activities like other children. “Though she might get tired faster, overall children like Bonnie are typically very active,” Dr. Keller said.

That’s great news for Bonnie, who lives on a horse farm where her mother races barrel horses and she wants to play T-ball like her brother.

“While her long-term prognosis is unknown, we have many children who have had this kind of procedure who are very healthy into their 20s, 30s and 40s,” Dr. Keller said. “Sometimes something else will need to be done in the catheterization lab to manage blood vessel narrowing or a heart rhythm problem, or they will need other technologies or a heart transplant if the heart begins to fail. But Bonnie is doing great.”

Statewide outreach

Bonnie was the second child in Ashland to be diagnosed with congenital heart disease before she was born.

While Anna could have gone to a congenital heart program in Ohio for treatment, she said the Ashland office was convenient and “we liked Dr. Holland. We liked Louisville, and we liked the children’s hospital and Norton Hospital, as we could be at same hospital with her when she was born.”

“Everyone at the hospital was amazing, especially the NICU nurses - they did everything they could for us,” she said.

Now that Bonnie’s surgeries are complete, she only has to go back and see Dr. Keller every 6 months.

“Living in Ohio, it’s great that we can see him in Ashland, which is just 25 minutes away. There is not really anything around here,” Anna said. “It’s less stress on the family.”

And for Bonnie, “She’s something else. She gives the nurses a run for their money.”