An unconventional High School Experience.

By Amy Tang

It’s not every day that you get to dress up in full hair and makeup to go to the Grammy Awards, and meet your lifelong idol. For Sea, meeting Lady Gaga was the highlight of her freshman year.

Sea’s wish, sprouted from her love for music, was granted by the Make-A-Wish foundation and will be a memory she continues to cherish for the rest of her life.

Sea was born with congenital heart disease (CHD), which, according to the Journal of Cardiovascular Development and Disease, is a problem with the way one’s heart forms before birth that prevents normal blood circulation.¹

CHD comes in a variety of forms. Sea’s specific condition is referred to as mitral valve regurgitation (MR), in which the mitral valve in one’s heart fails to close properly and causes blood to leak backwards instead of efficiently circulating through the heart.² The mitral valve is essentially a gateway that regulates the flow of oxygenated blood from the lungs into the heart, and extreme levels of blood leakage limit the rest of the cardiovascular system from getting enough blood.

When she was 15, the implanted mechanical mitral valve Sea got when she was two years old started giving in. Sea faced a medical crisis that few teenagers could imagine.

Despite living with a heart disease her entire life, Sea was like any other teenager. “I’ve literally never known life without it,” she says.

She still went to school, travelled, and hung out with friends. Sea found the most joy in dance. Training for several hours each week, Sea’s life was constantly filled with music, and she loved to perform. Sea loved to fully immerse herself in music as the rhythm ran through her, and she translated her senses into movements. Outside of dance, Sea was also an avid Clairo listener and loved discovering new music genres.

Then, things changed. Just days before she was supposed to leave for a vacation with her family, Sea’s chest began to hurt, and she started to feel really short of breath. To her, this was very unusual, considering that she was dancing eight to ten hours a week and physically in shape. Though it initially concerned her, the pain subsided the next morning, and they still went to Utah.

Sea thinks back to the moment where she and her friend were being playfully chased by two kids at their hotel. “It was so stupid… These two kids were terrorizing me and my best friend,” but when she turned on them to get payback, Sea realized that she couldn’t really keep up and instead felt unusually out of breath after just running a few feet. Although Sea didn’t think too much of this at the time, she now reflects on this moment knowing that her heart was already failing then.

On their way back from Utah, Sea recalls, “I needed a wheelchair in the airport because I couldn’t walk… not that I couldn’t walk, but like it was taking so much out of me to walk.”

Sea (left) taking a selfie with Lady Gaga on the red carpet at the Grammy Awards

As soon as her family returned, her parents immediately took her to one of the best pediatric hospitals in Chicago, but the doctors weren’t able to find anything. For the next few weeks, Sea frequently went back and forth between the hospital and her home, and despite all the tests they did, she always got the same response.

Her condition worsened, leaving her unable to walk at her normal pace. She sometimes fell asleep without being able to wake up. Sea still went to school and received permission to leave classes early just so she could avoid the crowded hallways and make it to her next class on time.

Contrary to adopting the typical “sick role” that is seen in a lot of popular media, Sea continued to participate in daily activities to the best of her ability. While we often perceive sick patients as in a constant state of pain, frail, or isolated, Sea didn’t let herself be solely defined by her illness, and she stayed active. Even as Sea had to take a break from dance, she continued to show her love for music everyday, listening to it any chance she got.

Sea started to become increasingly frustrated when these medical providers, who she was supposed to rely on, seemingly ignored something she felt to be deeply wrong with her heart.

“I don’t even remember how I got them to actually listen to me!,” she said. “I think it was probably my mom that yelled at them eventually, and I finally got admitted.”

Sea had always had an abnormally slow heart rate, also known as bradycardia, but it was never very prominent. By the time she was finally hospitalized, Sea’s resting heart rate had dropped to 35 beats per minute (bpm), far below the normal range of 60 to 100 bpm. Because of this, Sea got a pacemaker put in, which doctors thought would solve everything, but it didn’t. “It helped my resting heart rate,” Sea says, “but I still felt like shit… I felt horrible.”

A couple months later, Sea went to Michigan for an open heart surgery to replace her mechanical mitral valve. Because pediatric redo open heart surgeries carry significant risks, her parents returned to the same hospital where Sea had her first surgery to ensure that all the stitches and incisions would be the same.

It was only until after her surgery that doctors finally discovered that the true cause of her discomfort was because of a growth inside of her mitral valve that numerous imaging tests were unable to detect. The surgery ultimately saved her life, and through it all, music was a constant source of comfort. Throughout her hospitalization, Sea found herself listening to music before and after surgeries in a way that was uplifting, healing her internally.

Today, Sea continues to live with her congenital heart disease, and she relies on daily blood thinners to sustain the function of her mechanical mitral valve. Beyond the scope of Sea’s congenital heart disease is the portrayal of Gabriel’s heart complications, a character from The Good Doctor, and an example of how pediatric congenital heart disease is shown in popular media.

In the episode “Intangibles”, we follow Gabriel, a young boy from Congo, through his diagnosis, surgery, and the doctors’ deliberations about his condition. While the episode ends on a hopeful note, with the doctors laughing and watching TV with Gabriel, and Gabriel’s mother finally finding peace, it presents an oversimplified view of CHD that isn’t very realistic. Unlike the show’s neat resolution, CHD is a lifelong condition that requires ongoing monitoring and repeated interventions. Sea had to get another open heart surgery to replace her mitral valve that malfunctioned, and even now, she still needs routine checkups. TV often portrays recovery as a happy ending, but they don’t show the complicated road to recovery.

Even after her open heart surgery, Sea still finds some aspects of her new life challenging. For example, the blood thinners she takes cause her to bruise & internally bleed more easily, which have limited her ability to play contact sports and do a whole slew of other things. Although congenital heart disease has shaped many aspects of her life, Sea continues to pursue what she loves. She joined a dance team at UCLA and met the revolutionary popstar icon herself, Lady Gaga. Rather than letting CHD define her, Sea has come to terms with her illness and views it as a part of her life that has taught her resilience and strength.

“It definitely gets to me sometimes, but I definitely think I do what I can with what I’m given… and I do think that I have learned a lot from what I’ve gone through,” she says.