By Danica Johnson (A mother to a child living with an ostomy)
When my daughter was born with OEIS syndrome, the world I knew shifted forever.
OEIS is a rare and complex congenital condition. It stands for Omphalocele, Exstrophy of the bladder, Imperforate anus, and Spinal defects—a cluster of abnormalities that affect the abdominal organs, urinary and digestive systems, and the spine. OEIS occurs in approximately 1 in every 200,000 to 400,000 live births. It is considered one of the most severe forms of the exstrophy-epispadias complex, and it requires extensive, lifelong medical care starting from birth.
Lily was born in December 2016, a month early. She was a premature baby, already facing more challenges than most could imagine. From the moment she arrived, Lily’s life was met with immense medical intervention. She was born with her bladder on the outside of her body, no formed anus, part of her intestines exposed, and a spinal abnormality. There was no easing into parenthood. We were immediately thrust into a world of NICUs, surgical consults, and overwhelming fear.
Her first surgery was at just five days old. The doctors created a stoma to allow her body to pass waste, because a pull-through surgery wasn’t an option due to the imperforate anus. In those early days, she was so fragile, so tiny, and yet somehow, incredibly strong.
For the first six months of her life, Lily lived with her bladder on the outside of her body. Ostomy care during this time was incredibly difficult. The space between her stoma and her exposed bladder was so small, and the constant moisture made it nearly impossible to keep an ostomy bag sealed. We were changing bags multiple times a day, sometimes as often as five or six times. Skin irritation, leaks, crying fits—hers and mine—it was all part of our everyday life. We were exhausted, scared, and yet somehow, we kept going. Because she needed us to.
At six months old, Lily had her second major surgery—a bladder closure, where her bladder was placed back inside her body. She also had an osteotomy, a surgical procedure that involved adjusting bone alignment to support her pelvic structure and overall anatomy. Following the surgery, she spent two full weeks with her legs in vertical traction to protect the repair and give her delicate body time to heal. It was one of the hardest things to see—but through it all, she never stopped smiling. Her little six-month-old face radiated joy, even in a hospital bed, even in traction.
Over the past few years, Lily has undergone multiple procedures— urologic and gastrointestinal assessments, spinal imaging, MRIs, nuclear medicine scans, bloodwork, ultrasounds, and more. While not every procedure carries major risks, they can be intimidating and overwhelming for such a young child. Yet every time, she amazed us with her resilience and unshakable spirit.
We’ve been blessed beyond measure to have Dr. Rodrigo Romao at the center of Lily’s care. His knowledge, expertise, gentle hands, and ongoing support have brought us so much comfort. He didn’t just treat Lily, he walked this journey with us, always available, always kind, always willing to explain, reassure, and go above and beyond. Having someone like him on our side has made all the difference.
Today, Lily isn’t just surviving—she’s thriving.
She is a vibrant, joyful little girl who radiates energy. She has discovered a deep love for dance, and is part of the pre-competitive program at KidzAct, a local dance organization. She leaps, twirls, and beams with confidence on stage. Watching her perform, you’d never know all that her little body has been through. Her ostomy is part of her—but it doesn’t slow her down. She is brave, determined, and full of life.
When she was born, we used to wonder what her future might look like. Could she play with other kids? Could she run, dance, swim? Could she just be a kid? Now, every time she steps on that stage, I watch her live the life we were once too scared to imagine.
Of course, her journey is far from over. Lily has another major surgery ahead, a complex, delicate operation involving multiple specialists and a significant hospital stay. The timing depends on coordinating teams, and we know we’ll be traveling out of province to Toronto Sickkids to be under Doctor Romano’s care. This next stage will focus on further work to support her reproductive system and urinary systems, helping her body continue to grow and function as it should. The thought is overwhelming at times, but we’ve done this before—and we’ll do it again. Because we know her strength. We’ve seen it. She’ll face this next chapter like she always does: with courage, joy, and that signature Lily smile.
Throughout all of this, we’ve been lucky to find connection and community. One of the most meaningful relationships we’ve built is with Danielle and Matt Belding, and their little rockstar Rylee, who was born with the same diagnosis in New Brunswick. Connecting with another family who truly understands what this journey looks like has been an incredible gift. We ask questions, share advice, and remind each other that we’re not alone. These kinds of connections are the foundation of a support system we never knew we’d need—but are endlessly grateful for.
Through Lily’s journey, I’ve learned how powerful awareness can be. When people understand what life with an ostomy really looks like, when they see the courage, the normalcy, and the joy, it breaks down stigma and opens hearts. That’s why sharing stories like ours matters. Every conversation, every question, every act of openness helps to build a more compassionate world for those living with ostomies.
One thing I’ve learned is that people with ostomies are warriors and so are the families who walk beside them. Our daughter’s ostomy is not a barrier—it’s a bridge. A bridge to health, to opportunity, to a full and vibrant life. Our hope is that by continuing to raise awareness and speak openly, we can help others find the same community, support, and hope that carried us through our hardest days. Lily’s story is one of courage but it’s also a call to action. Let’s continue to lift each other up, advocate for accessible ostomy care, and celebrate the incredible strength that lives within every ostomate and their families.
To the parents, caregivers, and loved ones just beginning this path: it’s okay to be overwhelmed. It’s okay to cry. But trust that in time, you will rise. You will adapt. You will find joy again. And you will be amazed again and again by the strength of your child.
Lily’s ostomy doesn’t define her. But it is part of her story and it’s a story filled with strength, resilience, community, and more love than I ever thought possible.
Lily and her family live in Halifax, NS
This story was sourced by Lisa Gausman, Ostomy Canada Senior Editor.