By Keysha Drexel
While 26-year-old Lura Fuller Denson of Mountain Brook doesn’t have a clear memory of it, her mother, Vickie Fuller of Redmont, said there’s one night in her daughter’s struggle with heart disease that she will never forget.
Just before her third birthday, Denson had to have open heart surgery to correct a problem with the structure of her heart that was discovered shortly after she was born in 1987.
“She was in ICU the night before the surgery, and we had to leave her there at the hospital overnight. It was one of the hardest things I’ve ever done. It’s a night that I’ll never forget,” Fuller said.
It was a night Fuller said she never imagined in the first few hours after her seemingly healthy, 8-pound, 9-ounce baby girl was born in Savannah, Ga.
“I thought everything was fine, and we were getting ready to take our baby home,” Fuller said. “But on the day she was supposed to go home, the doctor came in and told me she couldn’t leave because she had turned blue and they had to monitor her.”
Fuller said the doctor told her that her daughter was a “blue baby” and explained little else about the condition.
“I was hysterical. I had no idea what that meant, but my mother was there with me when they told me that Lura was a blue baby, and I could tell by the look on her face that it wasn’t good,” Fuller said.
Denson was in the ICU for a week before she was allowed to go home and had to wear a heart monitor.
“That thing went off every two seconds, and I was in a constant state of panic,” Fuller said. “I would basically just hold her or stand over her day and night to make sure she was breathing. Every time that monitor made a sound, I wondered if my baby was going to die.”
After a month of living on pins and needles, Fuller was able to get her daughter an appointment with a cardiologist in August, Ga., who inserted a heart catheter that was only a temporary solution until surgery could be scheduled the following week at the University of Alabama at Birmingham.
At UAB, doctors placed a tube called a vortex shunt between the arteries in Denson’s heart, and Fuller finally learned the name of what was making her infant daughter’s first few weeks of life so difficult.
“It’s called Tetralogy of Fallot, and the doctors told me that it was a congenital heart defect that probably happened around the eighth week of pregnancy,” Fuller said. “There was some relief in having someone explain to me what was going on, but of course, I also felt guilt, because as a mother, your first thought is that you’ve done something wrong to cause this.”
Any relief Fuller felt at having her daughter’s condition explained to her was quickly overshadowed when the doctors started talking about how to treat the defect.
“They told us that the shunt was just a temporary fix until her body grew and she got stronger,” Fuller said. “That’s when we found out that our baby would have to have open heart surgery. I was just terrified.”
But from the beginning, Fuller said, she was determined not to let her own fears about Denson’s heart condition cloud her daughter’s childhood.
“We took our baby home and tried to be as normal as possible,” Fuller said. “I had all this anxiety about her health, but I never made a big deal out of it in front of Lura because I didn’t want her to think she was hindered by anything.”
When she was almost 3, Denson had her first open heart surgery. She astounded her doctors and her parents with her speedy recovery.
“The morning after she had open heart surgery, she was sitting up in the hospital bed asking me when she could go to the playroom,” Fuller said. “She always had that kind of an energy. Lura never stopped going, going, going as a child, and she still doesn’t stop.”
Denson said as a young child, she doesn’t remember feeling any different than other children.
“My mother never wanted me to feel limited in any way because of my condition, and I never did, really,” Denson said.
But still, Denson and her family got plenty of reminders that Tetralogy of Fallot is a rare and complex heart defect that affects only about five out of every 10,000 babies.
“I was on a skiing trip with my church one time and thought I was just coming down with the flu, but Kelly Morrison, a mother on the trip who had just lost her daughter to heart disease, recognized my symptoms and rushed me to the hospital,” Denson said.
Morrison is the one who told Fuller about the Birmingham branch of the American Heart Association and its efforts to raise awareness and fund research for cardiovascular diseases and strokes, the top cause of death in Alabama, Denson said.
“I got involved with the American Heart Association when I was a freshman at Vestavia Hills High with the Sweethearts program,” Denson said.
The Sweethearts program is affiliated with the American Heart Association and helps connect students with community service opportunities associated with heart diseases.
While in the Sweethearts program, she met C.D. Denson, who’s now her husband.
“We’ve been together since we were in high school, for 10 years now, and we’ve been married for three years,” she said.
The couple has a 2-year-old daughter, Martha Mae. Denson said she got a whole new perspective on heart disease when she found out she was expecting her daughter.
“When I found out I was pregnant, I called my cardiologist because I knew that my child would probably be at a higher risk for heart disease, and that really worried me,” she said. “I got a little glimpse of what my mother has gone through.”
No defects could be detected, and Denson gave birth to a healthy baby girl. It wasn’t until four months later that the young mother was horrified with the news that history might be repeating itself.
“Martha Mae was about four months old, and I took her into the pediatrician because I thought she had an ear infection,” Denson said. “During the exam, the doctor thought he detected a heart murmur.”
But while subsequent tests gave Martha Mae a clean bill of health, Denson was reminded that her struggle with heart disease wasn’t over.
“The pregnancy took a toll, and my heart was very enlarged. I had to have a second open heart surgery,” Denson said.
Denson needed a valve replacement. Her surgery was scheduled for December 2012.
“It was just a crazy time. My baby was celebrating her first birthday, my grandmother had just died and the doctor who did my first surgery had retired, so I was in a panic,” Denson said.
Fuller said it was difficult to watch her daughter prepare for her second open heart surgery, especially knowing that if something went wrong, she could lose her daughter and her granddaughter could lose her mother.
“I thought it was a hard thing to face as a mother, but it’s really tough as a grandmother, too,” she said. “I was worried for them both.”
But in typical Denson fashion, Fuller said, her daughter emerged from her second open heart surgery with as much energy as she had as a toddler.
“There she was, sitting up in the bed again, calling me and asking me to bring her makeup, her hairbrush and her phone to the hospital,” Fuller said. “During her recovery, I would go and walk laps with her in the halls of UAB, and I was the one who had to sit down and rest from time to time.”
Denson and Fuller recently shared their story at the Birmingham Heart Guild’s annual Holiday Luncheon and Fashion Show and are making plans to attend the 2014 Birmingham Heart Ball on March 1.
“When we got Lura’s diagnosis, we learned that there was a big chance she wouldn’t live past a certain age. No parent should have to hear that. That’s what the money raised by events like the Heart Ball goes to–to pay for research so that we can learn to prevent heart diseases in the first place,” Fuller said.
Denson isn’t the only one in the family touched by heart disease, Fuller said.
“I lost my dad when he was just 57 to a stroke and heart disease. My husband has a defibrillator that keeps him alive and has had two massive heart attacks,” she said. “And we’re not the only ones. At some point, almost every person will be affected by heart disease in one way or another. That’s why I believe so strongly in the work the American Heart Association does.”
Both Fuller and Denson said they are thankful that advances are being made to better detect and treat heart diseases through the efforts of the American Heart Association but said they know there’s much more to do.
“I know my struggle with heart disease is not over, and I know so many people who are dealing with it every single day,” Denson said. “I just count my blessings and keep moving forward.”
Proceeds from the Birmingham Heart Ball on March 1 at the Cahaba Grand Conference Center will benefit the American Heart Association. The event will begin at 6:30 p.m. with a silent auction and cocktails followed by dinner, a live auction and live entertainment. Tickets are $350 per person or $600 per couple and can be purchased by calling 510-1500.