Born with three holes in her heart - a battle against Tetralogy of Fallot

She turned around, knowing the garage door was shut, but still expecting to see a car bursting through and ramming into her back. Suddenly, she realized her defibrillator had gone off. She rushed inside, yelling for her roommates, before she passed out.

The next thing she remembers is waking up in the emergency room.

“The pain was unlike anything I have ever experienced,” she said. “I’d had a normal day of church, lunch with friends and I was doing a dance workout when I went into cardiac arrest.”

Mary Michelle Foos, 23, was born Jan. 30 1998, in Tampa, Florida, with Tetralogy of Fallot, a rare condition in which someone is born with a combination of four heart defects, each present at birth. Foos’ condition, specifically, was caused by three large holes in her newborn heart.

According to the Cleveland Clinic, Tetralogy of Fallot occurs in roughly five out of every 10,000 births. While corrective surgeries can be performed to help with the condition, there is no set cure as each case is different.

Doctors were unsure whether Foos would live to see her first birthday because along with Tetralogy of Fallot, she was born with an esophageal atresia; a birth defect that causes the esophagus to be separated into an upper and lower section—not connecting.

At just two days old, Foos’ esophagus was repaired three times. She was sent home with a feeding tube through her nose and doctors warning her parents that her heart would require further attention in the near future.

Foos was routinely hospitalized for congestive heart failure until, finally, at four-months-old, doctors scheduled her first open-heart surgery. The intense procedure required her to stay in the hospital for approximately three weeks during recovery, she said.

“I obviously don’t remember the procedures, but I still carry the guilt from them knowing that my mom lived at the hospital with me for all that time,” she said. “I feel guilty that I took that mother-son time away from my brother.”

After recovering from open heart surgery, medical appointments became Foos’ entire infanthood. Five days out of each week she attended seven doctors’ appointments. Her medical team included an orthopedist, a cardiologist, a thoracic surgeon, a neurologist, a pulmonologist and physical, occupational and respiratory therapists.

Her condition remained steady for a year or so, until, during a routine 18-month-old appointment, doctors told Foos’ parents that she would require another open-heart surgery. Her parents were in the midst of moving from Florida to Kansas City, MO, she said.

Having already sold their home, Foos’ mother stayed with her daughter in the hospital for eight weeks during the procedure and recovery, she said. During this time, an ECMO bypass was used to allow Foos’ heart and lungs to rest while her 18-month-old body recovered from the procedure.

The surgery proved successful, though, not without more battles. At just 18-monts-old Foos moved to Kansas City with her family and faced new challenges—relearning how to eat and walk while, simultaneously, dealing with narcotic withdrawals.

“I guess that is where the childhood part of the story stops,” she said. “After getting through all of that, I really did have a normal life.”

Growing up, Foos did the same activities as other children—competitively playing volleyball, cheer and dancing through her adolescent and teen years.

“I used to be really self-conscious in elementary and middle school about the scars on my chest,” she said. “When other kids would ask me what happened, I just told them I was attacked by a shark because I didn’t want to explain what really was going on.”

Despite having a normal childhood, Foos was warned that as her 20s approached, she would likely have further heart complications.

Not letting her heart condition slow her down, Foos moved 16 hours away from home to attend college at Georgia Southern University in Statesboro, Georgia. Here she studied psychology and criminology, while also maintaining a normal college career.

She attended tailgates, joined a sorority and volunteered as a member of Miracle at GSU—a philanthropy that raises money for children at Miracle Hospital.

“I think going to college that far away is the main reason for my independence today,” she said. “If I would have stayed close to home, it would be easy to not feel good and have my parents take care of me. That isn’t an option 16 hours away.”

During her junior year, the complications doctors had warned her about presented themselves. Severe chest pains landed her in the ER where doctors performed an ejection fraction; a measurement of the percentage of blood leaving the heart each time it contracts.

Foos ejection fraction came back extremely low and resulted in her first heart-related surgery since she was an infant. Doctors performed a cardiac ablation, a procedure that scars tissue in the heart to block abnormal electrical signals.

“They told me that usually people end up needing two ablations before things are really fixed,” she said. “Well, I’ve had four total.”

At the end of her junior year at GSU, Foos went back to the hospital for her second cardiac ablation. This time, they also implanted a defibrillator to help counteract her conjunctive heart failure.

The same defibrillator is what saved her life during a dance workout in Nov. 2020, just two months before her college graduation.

“It’s crazy because I thought everything was fine, I think my doctors thought everything was fine,” she said. “Now looking back on it, if I didn’t have that defibrillator put in when I did, I would probably be dead.”

That day, dancing in the garage, Foos’ heartrate went from 150 beats per minute, to over 300 in a matter of seconds. The drastic jump caused her heart to go into cardiac arrest, she said. An ambulance transported her from Statesboro, GA to Mayo Clinic in Jacksonville where she was treated and given another ablation.

“After graduation I got a job in Jacksonville because I want to be as close as possible to my Mayo doctors as possible,” she said. “I still struggle with good and bad days pretty regularly.”

Foos now works as a targeted case manager at the Children’s Home Society of Florida where she works with clients to connect them with resources that will help them get back on their feet, she said.

“I think above all else, my condition has taught me how to slow down and appreciate how precious life is,” she said. “I always want to be go, go, go, but have learned to make time to rest.”

Her parents still reside in Kansas City, but make the trip to Jacksonville anytime Foos requires a surgery, she said. She and her mother got matching tattoos to symbolize their bond.

“It is a symbol that means ‘embrace life,’” she said. “It reminds me to take the highs with the lows even when it feels like too much.”

While there is still no cure for Tetralogy of Fallot, Foos remains hopeful that she is under the best care in Jacksonville. She is able to regularly exercise, go out and work—something that doctors were unsure would ever be possible.

In her post from New Years, 2021, she said, "In 1998 they told me I wouldn’t make it to my first birthday. In 2018 they told me I wouldn’t make it another 12 months. It’s now 2021 and (after surviving cardiac arrest a. month ago) 15 surgeries later, and I'm still rising above what has seemed nearly impossible. All by the glory of God! Im feeling super blessed to be starting a new year feeling as good as I do today, and surrounded by the most supportive people I could ever ask for!"