Lizeth had never heard of the condition before. Her OBGYN referred her to specialists, and she soon found herself meeting with teams in her hometown of Stockton and at UC Davis Medical Center. The team at UC Davis gave her the roadmap: once her baby was born, Shriners Children's Northern California would take over her care.
Emma was born in 2021 with myelomeningocele spina bifida, the most severe form, where the spinal cord and nerves protrude through an opening in the spine, forming a protective sac. Prior to delivery, doctors told Lizeth she would be induced, and baby Emma would need immediate surgery to close the opening in her back and protect the exposed nerves.
Emma also needed a ventriculoperitoneal shunt for hydrocephalus, abnormal buildup of cerebrospinal fluid within the brain's ventricles, to decrease pressure inside the skull and limit potential brain damage.
In addition to her other challenges, Emma was also born with clubfoot, which can have a link to other disorders, including spina bifida. In most cases of clubfoot, the foot appears twisted inward at the ankle. While clubfoot may be detected during pregnancy, it is visibly obvious at birth.
Despite everything, Emma made it home within a couple of weeks.
Doctors explained that Emma would have a neurogenic bladder and bowel, a loss of control due to nerve damage from her spina bifida, and Lizeth would need to learn how to catheterize her daughter. But from the beginning, she felt prepared for the journey ahead.
"I learned as I went, but I felt really equipped," Lizeth said. "Shriners Children's equipped and supported me, answered all my questions. I had a great team by my side."
That team includes Maya Evans, M.D., director of the spina bifida program at Shriners Children’s Northern California, and Constance Mitchell DNP, CPNP-PC, PHN, her nurse practitioner, along with urologist Yvonne Chan, M.D.
At Shriners Children's Northern California, medical teams and rehabilitation specialists collaborate with orthopedic surgeons and urologists to help children with spina bifida lead active, productive lives. Patients are generally seen in spina bifida clinics at least once per year, with younger children typically seen more often.
The team is currently working with Constance to manage Emma's bladder function. Emma takes medication to help her bladder hold more, which has made a significant difference. Daily enemas have also helped address constipation issues.
"They explain things and make it feel like they're there for Emma and have her best interests in mind," Lizeth said. "At other places, I question what is going on. At Shriners Children's, they told me the risks and realistic healing before surgery. I felt reassured in support, especially if things went wrong, knowing we could come back. I felt seen by her care team. I was at peace."
Shriners Children's equipped and supported me, answered all my questions. I had a great team by my side.
In 2023, Emma underwent clubfoot surgery performed by Vedant Kulkarni, M.D., assistant chief of orthopedics at Shriners Children's Northern California. Clubfoot is treatable, and most patients enjoy fully functioning use of the once-affected foot. Most babies with clubfoot will need to have their Achilles tendon lengthened through a procedure called tenotomy to help get the foot in the best position. A cast is then put on for three weeks until the tendon fully heals. After casting, a special brace made of two high-top, open-toed shoes fixed on a metal bar must be worn full time for the first three months, then at night and during naps until around age 4 to keep the foot from moving back into the wrong position.
For Emma, casting continues as she grows because her feet continue to turn inward, requiring ongoing care to maintain proper positioning.
During her pregnancy, Lizeth was told Emma would likely be paralyzed from the waist down.
Now 4, Emma uses a wheelchair and has some leg movement – she just learned how to do donuts in her chair. She has physical equipment to help her stand and strengthen her core. At home, her goal is to stand for more than an hour, and she's doing well, starting at 5 to 10 minutes and working her way up.
"Emma is defying the odds," Lizeth said.
Emma attends preschool six hours a day and loves it. She has a great support system with four teachers who help her, and physical and occupational therapists come to her school and can pull her out for sessions, teaching her skills like how to transfer from her wheelchair to a classroom chair and use her brakes.
As an only child, Emma treasures her time at school with friends. Many of her classmates also receive care at Shriners Children's Northern California and have spina bifida.
"She doesn't feel like she is alone," Lizeth said. "There's a school for her, and she has a community."
That community extends to events like the Spina Bifida Association’s Walk N Roll, which Emma and her friends attend together.
At home, Emma loves Disney princesses, especially Tiana. She enjoys reading, music, painting, playing with dolls and having playdates with her cousins. She's even signed up for music lessons to learn piano and drums.
"She's so young, she doesn't really know what she has," Lizeth said. "She knows she can't walk but can move her legs. She's in the stage where she's asking a lot of questions but she’s not really understanding. Right now she's asking to ride a bike."
"Being her mom is such a blessing," Lizeth said. "Her dad and I love her so much. Everyone who's met her has said she's outgoing and happy."
For Lizeth, not receiving a bill for Emma's care has been a blessing and a relief. Shriners Children's Northern California is located about an hour from their home, a distance Lizeth doesn't mind for Emma's sake.
"Medicine, enemas, catheters are covered, delivered, or I can pick up at the local pharmacy," Lizeth said. "It takes something off my plate. We are so blessed to have Shriners Children’s.”
Baby Emma waits to receive her cast at Shriners Children's Northern California.
