During her 20-week ultrasound, Samantha Sommerville learned that her preborn baby girl had spina bifida, and doctors offered little optimism for the baby’s future. Until 24 weeks, Sommerville said she was told to abort at every single appointment. But she stood firm in her decision to let her daughter live.
Doctors said the baby had myelomeningocele, the most severe form of spina bifida, and that she would be paralyzed from the waist down. They also believed she might have developmental delays due to hydrocephalus. At 23 weeks, Sommerville underwent testing to determine if her daughter had any other medical concerns that would prevent her from undergoing prenatal surgery to close her back. The results showed that prenatal surgery would not be possible.
“To be honest, it was a very long and emotional pregnancy,” said Sommerville in a personal essay for the Spina Bifida Association. “I was offered an abortion at every visit up until 24 weeks.”
On March 24, 2020, during the initial lockdown of the COVID-19 pandemic, Sommerville gave birth to her daughter, Lillian Grace, via C-section. Three hours after her birth, she underwent her first spinal repair surgery, which lasted over seven hours.
“Before they took her away to get prepped for surgery I had only been able to see a glimpse of her,” she said. “14 hours after my delivery, I met my daughter. It was the longest 14 hours of my life.”
Nine days after her birth, Lillian underwent surgery to place a shunt in her brain for hydrocephalus. Lillian stayed in the neonatal intensive care unit for 18 days, which was difficult for the family because of rules put in place due to COVID-19, and having a four-year-old son at home to care for as well.
“After I was discharged, we were put on the one visitor only restriction,” Sommerville explained. “We could drive 2 hours to the hospital every day. I would pump [breast milk] in the car on the way down, pump next to Lillian, and then pump again in the car on the way home. I would get to visit her for about an hour and a half to two hours, and then my husband and I would switch and he’d get the same amount of time. Due to Lillian’s repair on her back, we weren’t able to hold her for the first two weeks. As she had to stay on her belly to heal [sic].”
Now six months old, Lillian has undergone three more surgeries and was hospitalized due to an infection. Still, her mother said, “[s]he is the happiest baby ever.”
“She is always smiling and only cries when she is hungry,” she said. “She is doing great! She is worth everything that I went through during my pregnancy. She is loved by her mommy, daddy, her older brother, and the rest of our family. She is the light of our lives, and I learn so much from her every day. She has taught me to be grateful for the simple things.”
Sommerville said that while they have “a long road ahead” and don’t yet know if Lillian will be able to walk, none of that matters because Lillian is “perfect!”
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