The Beauty of Different: Sasha’s Story

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Sasha’s open-heart surgery at Children’s Hospital of Philadelphia (CHOP) landed her on the cover of a magazine and defined much of her childhood — but it all happened before she was even old enough to remember.

Sasha and her mom Nineteen years ago, while still in her mother’s womb, Sasha was diagnosed with tetralogy of Fallot (ToF), a life-threatening congenital heart defect. Fortunately, her parents, Linda and Dana, contacted the Fetal Heart Program at CHOP. Now in its 20th year, the Fetal Heart Program is one of the largest programs of its kind, and is a national leader in the evaluation, diagnosis and treatment of fetal heart disease. The multidisciplinary team, led by Medical Director Jack Rychik, MD, provided ongoing monitoring throughout the remaining months of Linda’s pregnancy and developed a plan to surgically repair Sasha’s tiny heart within weeks of her birth.

Months after her successful return home, Sasha and her older sister Paige were featured on the cover of the 2002 Children’s View, a CHOP publication which highlights departments throughout the hospital and their impact on the lives of children and families. A framed copy of the photograph now hangs in the family’s home. Though Sasha, now 19, doesn’t remember her turbulent arrival into the world, she is quite familiar with her mother’s stories of that time.

“I can’t imagine what it would feel like to have a child who needed something fixed in order to survive,” she says. “Even though I don’t remember what happened to me, I know I’ve been through a lot. I wouldn’t be here without Dr. Rychik and my care team at CHOP. What the Fetal Heart Program offers families is really amazing.”

Growing up ‘different’

Just like any other happily ever after, Sasha’s story continues after the credits roll. With the exception of a non-invasive transcatheter procedure in her early teens to correct a residual hole found in the top chambers of her heart, the physical implications of Sasha’s CHD have been minimal. She doesn’t have to take medication; she doesn’t have exercise limitations; and she has only annual checkups with Dr. Rychik in the Cardiac Center.

Still, growing up with a scar that crossed the expanse of her chest was difficult for Sasha. “Kids can be mean,” she says. “I felt really different from everyone else.”

Though Sasha’s mom often told her to be proud of the special heart that made her different and to not be ashamed of her “zipper,” Sasha notes, “It doesn’t resonate when adults say you’re beautiful despite something you don’t like about yourself.”

As a result, Sasha spent the better part of her childhood covering up her scar with turtlenecks and avoiding v-neck tops and swimsuits at all costs. It wasn’t until she attended a patient-family education event at CHOP and met another young survivor of ToF, who wasn’t afraid to speak openly about her scar, that Sasha began to feel differently.

“I will never forget how she wore her v-neck shirt with confidence,” says Sasha. “She taught me that my scar not only made me different, but more beautiful — insisting I should be nothing less than proud of it.”

After that experience, Sasha, who loves fashion — especially thrift store finds — vowed she would no longer hide her scar. “I love using fashion as a way to express myself, and I realized that if I was covering up my scar, I wasn’t fully expressing who I am.”

From positive body image to making a positive difference

Dr. Rychik and Sasha today Sasha wrote about her experience of coming to accept her scar in the college essay that helped land her a spot at New York University, where she majors in magazine journalism. “I don’t see many people who look like me in magazines — neither Black women nor women with scars,” says Sasha, whose dream job is to become editor-in-chief of British Vogue. “The body positivity movement excludes people with scars. These magazines set the beauty standards, and by excluding people with scars and disabilities, they’re not doing their job.”

Already a budding writer with articles published in multiple independent magazines, Sasha plans to change that standard.

Scars are nothing to hide and nothing to be ashamed of. If I didn’t have a scar, I wouldn’t be here.

Says Dr. Rychik of Sasha’s journey, “To know our efforts before and after birth, bringing the latest knowledge and experience to care, resulted in this beautiful, thriving young woman who will make her mark on the world, is extremely gratifying! It reaffirms the critical value of providing good care before and early after birth — not only for early outcomes, but as an investment that reaps rewards for an entire lifetime.”

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