The Heart of the Matter: An Interview with Sofia Johnson
May 14, 2018
Arriving at the Davies Center at the University of Wisconsin-Eau Claire, she appears as a petite blonde. She rushes over to greet people with either a hug or handshake, her wide smile brightening her face. Her favorite hobbies are listening or singing to music, shopping at Ulta Beauty, discuss her love of dinosaurs, or hanging out with her parents, older brother, friends or boyfriend. Even though her aspirations are to be President of the United States or a famous Hollywood singer, she explains that she hopes a degree in political science will help her achieve, in her words, her “more attainable” dream of being a criminal defense lawyer.
Sofia Johnson is a free-spirited, fun-loving college student; so what makes her different? People may wonder this until noticing the faint scar under her neck. If you ask about it, she may share her extensive medical history.
Sofia Johnson has a two-chambered heart with one atrium and one ventricle, half the amount that a typical heart has. Sofia has stated that this means that her blood is not properly filtered into her heart and there is a potential for blood clots to form in her bloodstream. Her other medical issues are that she has no thyroid or spleen and she has an upside-down stomach. Each issue effects the other, she was diagnosed with these conditions when her mother was eight months pregnant almost 21 years ago.
According to her mother, Toni Johnson, she had went in for an ultrasound and the doctors could not find her stomach. This alerted the doctors that there was an issue with her [Sofia’s] heart because the two are meant to develop at the same time. As her parents were panicking from not knowing what was going on, a nurse finally broke the silence. “We cannot find her stomach, but that’s not the problem,” the nurse said, “Your baby has a heart defect.”
Johnson had her first heart surgery at 12 hours old on May 23, 1997. The surgery would be followed by four more surgeries before the age of 1. Her fifth and final surgery was at the age of five. The fifth and final surgery, at the age of 5, meant to repair the damage from a Fenestrated Fontan surgery, an operation meant to close off an area in her heart that was affecting her blood-oxygen levels. The final surgery was a success.
While the surgeries saved her life, they placed constrictions on her. She cannot walk for a long time due to a cut vein from one of the surgeries. The result of this cut vein is that one of her legs is shorter than the other, requiring her to wear a small wedge in one of her shoes called a “lift.” Another risk is pregnancy, while Johnson has repeatedly stated that she is not trying to be pregnant, it is incredibly dangerous because it would physically drain someone with similar conditions as her.
Today, these medical complications still drastically affect her life. Johnson has to take several medications every day, all in the attempts to control her blood pressure, heartbeat and general well-being. She has to visit Mayo Clinic in Rochester, Minnesota, every year for an all-day physical with specialized cardiologists.
Johnson has monthly blood drawings due to one of her medications, a blood thinner called, Warfarin. The blood drawings are to make sure that there are no blood clots forming in her veins, which is quite possible due to them being smaller than average and more fragile.
If someone mentions her scar, she is more than willing to talk about it with them. If it is unmentioned, Johnson would prefer not to advertise her condition. She believes that if she is vocal about her scar and conditions at all times, she would be defined by it. This is something she has repeatedly stated that she is against.
Sofia’s desire to not be defined by her conditions correlate with her fierce independence. When asked about his feelings towards her conditions, Sofia’s boyfriend of 2 ½ years, David Engebretson, has stated that even with her rare conditions, “I still see her as one of the most stunning, courageous, independent and intelligent women I know.”
Johnson’s advice for parents who have a child with a heart defect and for children with a heart defect. She got slightly teary eyed and stated, “For the parents: Do. Not. Give. Up! My parents had to decide whether or not to have me go through another surgery. They did and it ended up saving my life. Do not give up on your child.
“As for kids with heart defects,” Johnson continued, “I’m still struggling with it too, but NEVER let your heart defect force you to stop living out your dreams.”