By her sixth birthday, Marina had achieved a red belt in karate.
She began cheerleading. Made honor roll.
And she had survived 21 surgeries—several of which nearly cost this tough little fighter her life.
“Marina is 11 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 A Giant Omphalocele
Going the distance for Marina, who was born with an oddly named defect that doesn’t really define its seriousness, meant many more surgeries and many imposing bills to preserve a life that might never have begun.
Marina was born with a giant omphalocele (pronounced uhm-fal-o-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, Florida, 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.”
Family Love and Support Can Make the Difference
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.
Medicaid helped provide the safety net to pay for the expertise that repaired Marina. The bills topped $4 million within 10 months. She and her parents are attending the annual Speak Now For Kids Family Advocacy Day sponsored by the Children’s Hospital Association June 26-27, 2018, in Washington, D.C., where they will advocate for children’s healthcare issues.
“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 says, adding that more doctors need to be educated that advanced pediatric care at places like Johns Hopkins All Children’s give families an alternative to terminating a pregnancy.
Nikki, who moved her family to St. Petersburg to be close to the hospital, says, “I will sing this hospital’s praises for the rest of my life,” she says. “It has taken a lot of players to get her where she is today, and we’re grateful for the whole team.”
On one visit, nurses greeted Marina wearing "Marina" T-shirts. Nikki was inspired enough to go back to school for training to work as an EMT in neurosurgery. 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 worked here for a few years, Marina is always more recognized by the staff than I am.”
Visit HopkinsAllChildrens.org/Voice4AllKids to learn about advocating for Johns Hopkins All Children’s Hospital and the patients we treat. Visit HopkinsAllChildrens.org/PlasticReconstructive to learn more about the surgical reconstructive program at the hospital.