By her sixth birthday, Marina had achieved a red belt in karate.
She made the cheerleading squad. Honor roll.
And she had survived 21 surgeries — several of which nearly costed this tough little fighter her life.
“Marina is 10 now, and her dad and I decided she should have some input on her own body, but you know what,” her mom, Nikki, proudly explains, “she’s a fighter. She told her doctor, ‘I want to see it through.’ She is ready to go the distance and finish up the last few surgeries. I’m really proud of her.”
Beating Giant Omphalocele
Going the distance for Marina, who was born with an oddly named defect that doesn’t really define its seriousness, requires at least several more surgeries that may go on through middle school.
Marina was born with a giant omphalocele (pronounced uhm-fa-lo-seal), which means the abdominal wall doesn’t close and, for Marina, the bowel, liver, stomach, spleen and small intestines protruded out of the abdominal cavity covered by a thin membrane. “We call it ‘an O,’ ” Nikki explains.
She was not breathing when she arrived six weeks early.
It took the transport team nearly 15 minutes to stabilize her as they moved her from Bayfront Health in St. Petersburg, Fla., across the street to Johns Hopkins All Children’s Hospital.
She was less than one hour old for her first surgery, with many more to come.
“This little girl has had several brushes with death along this journey. She had a pretty severe form of the birth defect. We needed to create space for those external organs inside the body, and that is a long process,” explains her long-time surgeon, Michael Gallant, M.D., of the pediatric plastic surgery department. “We have needed nature’s help as she grows.”
What really complicated things for Marina early on was a bout of pneumonia that required her to be put on ventilation. Gallant adds, “We can credit the incredible staff of nurses that took care of her with saving her life.” In fact, Gallant points out, “It is teamwork and collaboration that leads to better outcomes and that is what earns Johns Hopkins All Children’s its reputation. We had an entire team working on Marina from day one. Early on I worked with now-retired Dr. Richard Harmel, our former chief of staff, who was replaced recently by a wonderful young pediatric surgeon named Dr. Drew Rideout. He brilliantly took over and has worked well with me on Marina’s final few surgeries.
“Finally, she’s almost — almost — completely done,” he concludes. Marina will have a procedure in December that should completely close the abdominal wall. She chose the holiday break so she wouldn’t miss school. “I love school,” Marina explains.
Family Love and Support Can Make the Difference
“To me, the real story here is Marina’s family,” Gallant continues. “One of the best things about this job is to watch these families totally reorganize their lives around the care of these children. This family moved across the state to find her the best possible care. Her parents are in love with her. Her nurses were in love with her. These things have to make a difference in the way a child thrives. It’s beautiful to watch.”
Marina spent the first 10 months of her life in the Johns Hopkins All Children’s neonatal intensive care unit (NICU) as surgeons began the long, careful process of putting her back together again, moving and placing her organs and closing the opening that allowed them to dislocate in the first place. It is an ongoing process that requires surgical adjustments as she grows.
“Early on I went through a ‘why me’ phase,” mom, Nikki, recalls, “but then one day she just smiled up at me in the NICU and I thought: ‘Of course. This is my daughter. We were given this special gift for a reason.’ I’m the person I am today because of her. I had to wait 35 years to meet my hero and now, her dad Geno and I get to raise her.”
Finding the Right Care in the Right Bed
A giant omphalocele is a birth defect that not all doctors considered survivable when Nikki was 19 weeks pregnant. Nikki’s perinatologist in Tallahassee suggested Marina wouldn’t have a quality life. “I just want parents to know that these children can survive with the right care,” Nikki points out. She was so convinced, that the family relocated to St. Petersburg for Marina’s birth and the best possible treatment Nikki could find through her own research: Johns Hopkins All Children’s.
She is so inspired by the hospital that has cared for Marina, who recently was greeted by nurses wearing "Team Marina" T-shirts for a follow up visit, that Nikki went back to school and has now worked as a technician in neurosurgery for two years. Now Nikki believes she is paying it forward and comforting other new parents facing similar fears. “It doesn’t matter whether I work here or not. I will sing this hospital’s praises for the rest of my life. It has taken a lot of players to get her where she is today, and we’re grateful for the whole team.”
Gallant has been caring for Marina from the beginning. “Marina loves that the doctors speak to her directly about her care. They talk to her like an adult. After all these years, Dr. Gallant is ‘Uncle Michael.’ ”
In fact, her mother adds, “even though I’ve worked here for several years, Marina is always more recognized by the staff than I am.”
Visit HopkinsAllChildrens.org/PlasticReconstructive to learn more about the surgical reconstructive program at Johns Hopkins All Children’s Hospital.