Lynlee’s Story
Lynlee’s journey began long before she took her first breath.
At her 16-week anatomy scan, Lynlee’s mom, Alexia, learned that her daughter had a rare condition called an omphalocele, meaning her abdominal organs were developing outside of her body. Doctors also identified a ventricular septal defect (VSD), a hole in her heart. Further testing showed no genetic cause — just a rare and complex diagnosis that would shape the months ahead.
From that moment on, Alexia’s pregnancy became a series of weekly appointments, constant monitoring and unknowns. Still, she held onto the belief that Lynlee would fight.
At 38 weeks, Lynlee was delivered via C-section and immediately transferred to Rady Children’s Hospital San Diego for specialized care.
Finding Strength in the NICU
Lynlee celebrated her first birthday in the neonatal intensive care unit (NICU), where she spent the first 13 months of her life. Although it was overwhelming, it quickly became a place filled with connection, support and unexpected family.
“We had such a tight-knit group of primary nurses,” Alexia says. “They held us together. They were the glue to our family.”
Her physicians, including Jeanne Carroll, MD, medical director of the level IV NICU at Rady Children’s Hospital San Diego and associate professor of pediatrics at UC San Diego School of Medicine, and Mark Speziale, MD, PhD, neonatologist at Rady Children’s and professor of pediatrics at UC San Diego School of Medicine, guided her family through every decision with compassion and expertise.
“Being a young mom, I looked at them like second parents,” Alexia shares. “They taught me how to care for my daughter and helped me through the hardest moments.”
A Complex Path to Healing
From the very beginning, Lynlee required advanced support to help her grow stronger.
She spent her first two months on a ventilator to help her breathe, followed by six months on CPAP as her lungs continued to develop. At five months old, she underwent a procedure to help open her lungs. When she still needed long-term support, she received a tracheostomy with Matthew Brigger, MD, MPH, chief of the Division of Otolaryngology and medical director of the Aerodigestive Program at Rady Children’s Hospital San Diego and professor of surgery at UCSD School of Medicine, giving her a more stable way to breathe.
At the same time, her care team was working carefully to treat her omphalocele. Because her organs were outside of her body, they couldn’t be placed back all at once. Under the care of David Lazar, MD, pediatric surgeon at Rady Children’s Hospital San Diego and assistant professor of surgery at UCSD School of Medicine, her team used gradual, highly specialized techniques to slowly guide her organs back into place — mindful of the pressure on her lungs with every step.
Recently, Lynlee reached a major milestone: a successful surgery to place her organs fully back inside her body.
Another big step forward came with feeding. After relying on tubes through her nose for most of her life, Lynlee now has a GJ tube (gastrojejunostomy tube) — a feeding tube entering through the stomach, allowing food and medicine to go directly into the intestines. It marked the first time she hadn’t had tubes coming from her nose or mouth.
A Life at Home, Full of Possibility
Today, Lynlee is 2½ years old and has been home for over a year. While she still requires around-the-clock care with a ventilator and tracheostomy, her personality is shining through everything she does.
“She’s walking, learning sign language and trying to talk,” her mom says. “She’s a normal toddler who wants to run, jump and play.”
Her journey continues, including occasional hospital stays, but being home has given her the space to grow, explore and simply be a kid.
For Alexia, the experience has changed everything.
“You have to take it one day at a time. Even minute by minute,” she says. “The days that feel like you’re drowning, you’ll catch a wave.”
Why Families Trust Rady Children’s NICU
Stories like Lynlee’s reflect what’s possible when expert care meets compassion.
At Rady Children’s Hospital San Diego, families facing complex diagnoses have access to advanced treatments, multidisciplinary teams and a level of support that extends far beyond the hospital room. For Lynlee and her family, that support made all the difference.
Learn more about Rady Children’s Neonatology program below.