From patient to advocate: A mother’s premature daughter leads to appointment on Governor’s Council for children with disabilities

She works in health care at UAB and has a premature daughter born with cerebral palsy. Crystal Odom steps up as the newest member of a state advisory group for children with disabilities.

Everleigh Family Inside 1Crystal Odom with her husband, Alex, and daughter Everleigh.Crystal Odom planned on a quiet Thanksgiving, content to spend time relaxing, eating delicious food and enjoying time with her family. It would be the last Thanksgiving spent as a family of three as Odom was pregnant with her second child.

As she packed the car for the holiday break, she began to feel an unusual pressure to push. She was only 17 weeks pregnant. Odom knew something was wrong.

She rushed to the University of Alabama at Birmingham Hospital, where the Maternal-Fetal Medicine team determined she had incompetent cervix, a condition that causes the cervix to open too soon in pregnancy. The team performed an emergency cerclage, placing a single stitch around her cervix, to prevent a miscarriage or previable preterm birth.

“The goal when placing an ‘emergent’ or ‘rescue’ cerclage is to hopefully keep the baby in the womb long enough to get to a point where the baby could survive without putting the mother at undue risk,” said Brian Casey, M.D., director of the Division of Maternal-Fetal Medicine. “When Crystal first presented at 17 weeks, her baby would not have been able to survive outside of the uterus. The cerclage helped get her to 23 weeks, which significantly increased her baby’s chances of survival.”  

Odom went into early labor a few weeks later and gave birth to her second daughter, Everleigh, on Jan. 8, 2020. Everleigh was born more than four months premature.

“I knew the odds of babies born at 23 weeks and the challenges they could face,” said Odom, a program manager for the UAB Department of Family and Community Medicine. “I also knew the resources and expertise at UAB were going to give my daughter the best chance to survive.” 

Uphill battle

Everleigh in swing Inside 2Everleigh, now 2 years old, continues making progress through therapy and clinical sessions at UAB and Children’s.Babies born at 23 weeks of gestation have a roughly 50 percent chance of survival. Everleigh was admitted to the Regional Neonatal Intensive Care Unit, where her team started post-birth care and activated the UAB Golden Week Program. The multidisciplinary program bundles evidenced-based best practices to reduce the risk in infant mortality or severe intraventricular hemorrhage within the first week of life.

Everleigh faced an uphill battle. She had underdeveloped lungs, heart and organs, leading to   complications including pulmonary hypertension and several incidents when she almost died.  

Everleigh was soon diagnosed with bronchopulmonary dysplasia, a chronic lung disease that most often affects newborns, premature infants or infants on ventilators for periods longer than 30 days. While her vent kept her breathing, the scarring on her lungs caused her constant discomfort. Odom and her husband, Alex, began looking for a solution to help ease their daughter’s pain. 

“Early on, the respiratory team discussed the possibility of a tracheostomy in Everleigh’s future and took the time to educate us on the procedure and long-term benefits,” Odom said.

A pediatric tracheostomy is a surgical procedure designed to help a child breath by inserting a tracheostomy tube through the neck into the trachea, or windpipe, allowing air to pass.

“Most parents balk at the idea the first time it is mentioned,” Odom said. “Because Everleigh’s team had guided us and provided information from the start, we felt confident in our decision to have her undergo the surgery.”

Odom credits the surgery as a turning point in Everleigh’s journey. She watched her daughter become a happier baby as she showed signs of physical and social improvement. Her family also had the opportunity to hold her without bulky machines restricting their connection.

Another challenge

Around her first birthday, Everleigh, who was now in intensive care at Children’s of Alabama, showed signs of developmental delays and muscle tone that differed from those of other children her age. After undergoing the Hammersmith Infant Neurological Examination, she was diagnosed with cerebral palsy, a group of disorders that affect a person’s ability to move and maintain balance and posture often caused by damage to a developing brain.

Cynthia Wozow, D.O., assistant professor in the Division of Pediatric Rehabilitation Medicine at UAB and Children’s, helped diagnose Everleigh and provided support to her parents.

Learn more about the UAB Women and Infants Center services here.

“I was diagnosed with cerebral palsy around the same age as Everleigh,” Wozow said. “I wanted Crystal and Everleigh’s family to understand that she is much more than a diagnosis and would not be put into a box.”

Wozow emphasized that the diagnosis did not change who Everleigh was but provided objective information about her motor and neurological functions so her team could establish a clear treatment path and milestones.

Everleigh, now 2 years old, attends various therapy and clinical sessions at UAB and Children’s. She continues making substantial progress, including starting to walk, which Wozow credits to her parents’ dedication to her ongoing treatment.

From employee to advocate

Odom had worked at UAB for two years in the Department of Radiology but had rarely interacted with the clinical side of the hospital before having Everleigh. She was in awe watching the Maternal-Fetal Medicine, RNICU and pediatric team’s dedication to her and Everleigh’s health and safety.

“Going from a ‘normal’ pregnancy with my first daughter, Adeline, to the ups and downs of Everleigh’s 14-month NICU stay, I had a lot of mom guilt and was overwhelmed,” Odom said. “Our care teams became our family and guided us through the unknowns, which eased our anxieties.”

Everleigh and sister in swing Inside 3Everleigh and Adeline OdomOdom started documenting Everleigh’s 14-month NICU journey through social media for friends and family to stay informed, but soon realized she was in a unique position to help other parents facing similar situations.

“The advice I give to other parents is, from the start, don’t be afraid to ask questions, get involved with the care team and try to understand what is going on so they can advocate for their child,” Odom said.

Her continued advocacy for Everleigh and parents with children with disabilities led to her appointment by Governor Kay Ivey to the Alabama’s Early Intervention System Governor’s Interagency Council for 2022-2023. The council consists of providers and parents with infants or children with disabilities to evaluate systems, best practices and provide guidance on where funds should be allocated throughout the state.

“It is a blessing they chose us,” Odom said. “I know I am only one mom; but if being open about my experience can help even one person feel like they are not alone in their journey, then I will gladly continue sharing.”