Andi Simmons is beginning to have faith in her heart. It’s taken about 20 years and four heart surgeries to reach that plateau.
Simmons, who turned 21 on Oct. 27, had seemed to be a healthy infant, though she cried incessantly. Her pediatrician diagnosed the symptom as colic.
The real cause of the crying came to light when her mother, Sheryl Baker, took the 8-month-old along to a doctor’s appointment for herself.
“I was crying nonstop ... so her doctor actually asked to look at me and picked me up and said I had a bad heart,” Simmons said, relating the circumstances as told to her.
Later, at Children’s Mercy Hospital in Oklahoma City, Simmons eventually was diagnosed with an aortic ventricular tunnel.
Heart tunnel
“The way it has been described to me, I had a tunnel in my aorta and my coronary artery was passing through the tunnel,” she said. The coronary artery “should go a totally different direction. It should not go up and through my aorta.”
Initially, though, the surgeon thought she had an aortic blockage. The real problem surfaced after surgery, when he tried to restart Simmons’ heart.
“They tried to get my heart to come off of bypass, and it wouldn’t work. My heart would not beat,” Simmons said.
Preparing to tell her parents their baby had died, the doctor first picked up her heart and turned it over in his hand for a closer look.
“He saw that he had blocked off my coronary artery, because it was tunneling through my aorta,” she said.
The subsequent surgery to correct that condition helped, though the cardiologist estimated Andi likely would not live past 2 years. She surprised everyone.
“My doctor was very relieved, and I made it into the medical journals on that surgery,” Simmons said.
Some time later, that same cardiosurgeon treated another child born with the same condition.
“It helped him save the kid’s life,” she said. “He knew what he was looking for that time.”
Simmons’ heart health, however, remained a concern.
Patchwork heart
At the age of 5, she underwent a second surgery, after developing a cough that became a predictable indicator of heart problems.
“I had just outgrown my first surgery and I needed some patching, and so they patched and that one was a pretty good surgery, a pretty simple one,” Simmons said.
Within a few years, she began coughing again.
“At my young ages, I never had symptoms other than a cough,” Simmons said. “The cough was almost a dead giveaway that I was getting bad enough for surgery.”
By that time, she was 8 years old and living in Chase County. The surgery was performed at Children’s Mercy Hospital in Kansas City.
“I remember that one,” she said of the surgery. “That one was fun. I was carefree. Everyone else was worried; not me.”
Her aunt had given her a Ty Beanie Baby elephant that accompanied her into surgery. “Squirt,” as she named the stuffed animal, came home with an iodine stain and a hospital wrist band of its own.
It would be more than 10 years before Simmons and Squirt went back in for heart surgery, though two of those years were not reasonably healthy ones, even by Simmons’ standards.
Serious symptoms
During her junior year in high school, Simmons said she began to slowly gain weight and became lethargic.
“It was gradual, so I didn’t really notice it. ... I fell asleep a lot more,” she said. “... I would fall asleep daily in the same class at the same time. Drove my teachers insane, but I always got my work done.”
She said she also developed heart palpitations.
“It was like an adrenaline rush, but my heart wasn’t beating like I had an adrenaline rush. It just felt weird. I would be kind of shaky,” she said.
She wore a heart monitor several times, but it recorded no unusual events.
Simmons was not surprised.
“It kind of went on the same frequency as an EKG, and in all of my lifetime, my EKGs have been perfect,” she said.
She was 19 and a freshman at Emporia State University when the symptoms became serious enough to warrant closer scrutiny.
It was spring break and Simmons, staying in an ESU dorm, found that most of the students already had gone home.
Deciding to enjoy her time off from classes, Simmons left the dorm and drove to her boyfriend’s apartment.
“It’s raining, so I run from my car and I feel something weird. My chest just feels weird, like something ‘gave.’ I never felt that way before and it kind of caught me off-guard,” she said.
She waited about an hour, resting and waiting for the uncomfortable feeling to leave. When she began feeling worse instead of better, she walked to the car around 1 a.m. and drove home. The walk from the car to her fourth-floor dorm room required what she described as “an incredible amount of energy.”
“I crawled up the steps,” she said.
Stripping off the layers of clothing and putting on pajamas exhausted her. She slept until 7 a.m. and woke, not feeling better.
“I needed to tell my mom, but it was so incredibly hard to hold my phone,” Simmons recalled.
A text to her mother brought an immediate response: get to the hospital. While Baker drove in from Chase County, Simmons found one of the few remaining students at the dorm.
“She did not have a driver’s license, but she drove me to the hospital,” Simmons said.
The trip and resulting enzyme tests and an electrocardiogram, as usual, showed no problem.
“They said I was fine and to check up with my cardiologist. They said, ‘Go home.’”
A few hours later, around dinner time, the symptoms became worse, sending Simmons and her mother back to the hospital.
“They said I was not having a heart attack and they could not tell me what was wrong with me,” she said. “They sent me home again. They said, ‘Please schedule an appointment with your cardiologist.’”
‘No magic wand’
Almost a month passed before Simmons could get in to see the Topeka cardiologist. During that time, she couldn’t find the energy to get out of bed and dropped out of classes at ESU.
The cardiologist ran another EKG, an echocardiogram and listened to her heart. The leakage had increased, he told her, but it wasn’t serious and certainly wasn’t critical. He told her she “would be OK” and to check in with him next year.
“And my mom threw a fit and told him I was having symptoms — I’ve never had symptoms — and there was something much more wrong with me and he either needed to get a second opinion or something,” Simmons said.
“And he told her, and I quote, ‘I don’t have a magic wand to fix her.’ She was, like, then give us a referral.”
He did, and Dr. Kevin Mulhern at the University of Kansas Hospital became Simmons’ new cardiologist. She was experiencing congestive heart failure.
“She had developed a significant leak ... through the valve,” Mulhern said in a telephone interview. “She developed it very suddenly. She could tell me exactly when. ... Her findings on the echocardiogram weren’t typical of most people with a leaky aortic valve. But still it was clear to us that she needed to have the valve replaced.”
Mulhern said that the recent development was an outgrowth of the original condition and subsequent repairs.
“It’s unpredictable, but one of the things that needs to be stressed to children, especially adolescents and their parents or guardians, is that we haven’t cured the heart problem and that things can come up in the future and that they require ongoing care the rest of their lives. ...
“Too often, they’re lost to medical care after they leave their parents’ insurance.”
Simmons said she has been fortunate to have been covered by insurance.
Odds: 1 in 125
The number of children born each year with heart problems may be more significant than the public realizes.
“Congenital heart disease affects about one in 125 live births,” Mulhern said, “so it’s really very common. Now, most of those are not as complex as Andi’s condition. Hers was a very uncommon condition, but because of the outstanding care provided these children, about 85 to 90 percent of them survive to adult life now.
“It’s really quite common now to see people with complex conditions like Andi’s doing well as adults.”
He was not surprised that Simmons’ EKG gave no hint of the seriousness state of her heart condition. Young people often do not exhibit impressive physical findings, though potentially life-threatening conditions are underway in their bodies.
“Health-care providers, I think, are more sensitive to this nowadays, maybe because there’s so many with congenital heart disease,” Mulhern said. “They’re much more willing to listen to what the patient has to say ...”
For Simmons, being referred to a health-care provider who would listen — Dr. Mulhern — may have been a life-saver.
Pediatric cardiovascular surgeon Dr. Gary Lofland performed the surgery to replace Simmons’ leaky valve. Because of her young age, she should outlive the metal valve.
“She has a replacement valve that will need to be replaced again,” Mulhern said. “But the heart itself is very healthy, so Andi’s prognosis is good.”
Reassuring noise
Waking from the anesthetic and painkillers, Simmons initially had been horrified.
“When I woke up, I immediately started crying, because the first thing I heard was this ‘tick, tick, tick, tick, tick.’ At first I thought it was a bomb, honestly, because I was on morphine,” Simmons said. “But after I realized it was the heart, that I was fixed and I wouldn’t ever have to have surgery again and that I’d feel better, I was overwhelmed with happiness.”
Now, Simmons’ activities are restricted only by what she feels she tolerates well and, because of the blood-thinning medication she will always need to take, whether an activity might cause bleeding.
“No contact sports, sky-diving, minor restrictions,” Mulhern said.
Simmons admitted that she occasionally resents the complications the heart problems have imposed in her life.
“Sometimes I’m really mad because I have to go through so much more responsibilities that a general 21-year-old doesn’t have to encounter,” she said. “I have a grandma’s pillbox, and I have to go to lab meetings and get my blood drawn monthly. I got on, like, fool-proof birth control because if I get pregnant that’s going to be another headache.
“And I have medical bills up to my eyeballs. I don’t know how to handle them yet. I’m living on my own, and my parents help me where they can help, but they are not rolling in the riches.”
Most of the time, however, she’s simply grateful to be enjoying life as a healthy adult. She works now as a part-time Gazette photographer and graphic designer and is preparing to go back to school.
“I’m fortunate now because I’m generally healthy, I got my dream job, and I turned 21 without a hitch,” she said.
Her cardiologist agrees.
“Seeing someone like Andi living a normal life is just great to see,” Mulhern said.