‘Embracing the Difference:’ A New Chapter for Nyomi, Written by Her Mom

As a mom of one at the time, Shelby figured she’d have an idea of what to expect from labor and delivery when she was preparing to have her second – a daughter, Nyomi. But familiarity shifted to uncertainty quickly when Nyomi became stuck during birth due to a sacrococcygeal teratoma (SCT). Occurring in approximately 1 in 35,000 – 40,000 live births, this SCT a rare congenital tumor that develops at the base of the spine and requires surgical removal as well as close monitoring of potential malignancy. Nyomi’s parents were unaware of her condition until the moment she was born.

“I was really scared. I was terrified for what her future would be,” said Shelby.

At 4 days old, Nyomi underwent her first procedure to remove the tumor at a hospital near their home, but unfortunately at 6 months, they learned it had returned. Shelby turned to social media to ask for help from a SCT parent support group who encouraged her to seek out the expertise of Dr. Aimen Shaaban, fetal surgeon and director of The Chicago Institute for Fetal Health at Lurie Children’s. This is where the Vincent family found an overwhelming sense of comfort and confidence in Nyomi’s care.

Just before she was 7 months old, Dr. Shaaban performed a second surgery which successfully removed the tumor without recurrence. Beyond that, he made the family feel safe and reassured as he connected them with other specialists across the hospital who’d support Nyomi’s care, including Oncology, Urology and Bowel Management.

“Every single one of [Nyomi’s] team members has been absolutely incredible to work with. They’re so patient,” said Shelby. “They treat her like she’s their child. I’m so grateful for their care.”

Due to the location of Nyomi’s tumor, she experienced nerve damage that ultimately impacted her bowel and bladder function. Late last year, the Vincents explored with their care team how the use of catheters might help Nyomi manage this. In addition to daily enemas, catheters have given her more comfort and freedom at school, and while she plays and explores the world as a 5-year-old.

Even at an early age, Nyomi was aware that her experience and frequent visits to the hospital were different than her peers. Struck by the question if she would ever be “normal like everyone else” at 4 years old, Shelby chose a creative route to instill confidence, worth and love within her daughter and other children going through medical obstacles – she wrote a children’s book. “Perfect Through and Through” features 28 characters based on real children, like Nyomi, with real medical challenges and aims to celebrate the uniqueness of every individual.

“My goal with this book is to normalize what all these kids are walking through so that they’re educated as they grow up. Everybody is different and it’s nice to embrace the diversity of every single person and what they need,” said Shelby. The book is a chance to learn about the many ways children “live, grow, and thrive.”

Committing to this project allowed Shelby to connect with so many other families who understand the highs and lows of a complex medical condition. The book’s lineup of characters includes several other inspiring Lurie Children’s patients; each one illustrated in a way that represents their unique lives, interests and diagnoses. “Perfect Through and Through” is available to order now via the Perfect Through and Through website, Amazon and Barnes & Noble, and a portion of proceeds will be donated to Lurie Children’s. To learn more about the book and the patients featured, visit @perfectthroughandthrough on Instagram.

It’s expected that Nyomi will need a bowel-related surgery in the coming years, but Shelby says the family is currently in a great “maintenance” phase with overall treatment. Nyomi is no longer seen routinely by Oncology, but supported by Urology and Bowel Management who continue to help her live the life she loves – one filled with plenty of princess dresses, singing and coloring.

Learning and adjusting to a child’s rare condition can be a challenging journey, but Shelby says she “would do everything over again to have [Nyomi].”

“She’s changed my life, and how I see life.”