Trisomy 18 (Edward's syndrome)
Ryan and Sylvia Bowen of Pelham, Alabama, were thrilled to learn they were adding a second daughter to their family in 2021. But, 12 weeks into the pregnancy, a routine ultrasound led to further testing that confirmed a diagnosis of Trisomy 18. “We were confused,” said Sylvia. “We had never heard of it, but we learned the prognosis was not good.”
Trisomy 18, also known as Edward’s syndrome, is a rare chromosome disorder that can cause low birth weight, congenital heart defects, severe intellectual disabilities and various physical abnormalities. Symptoms vary greatly among children, but most physicians agree that a diagnosis of Trisomy 18 is incompatible with life. Most babies die in utero or immediately after birth.
The diagnosis led to biweekly visits with Sylvia’s OBGYN and countless consultations with other specialists as the couple faced a frightening, uncertain future with steadfast faith. They named their daughter Zoe Victoria – “Zoe” means “life” and “Victoria” reflected the Bowens’ belief that she would be victorious in this life.
Zoe was born in May 2021 at 37 weeks, surprising her parents and her care team with a strong heartbeat and achieving unexpected milestones during the weeks she spent in the Children’s Neonatal Intensive Care Unit. “She was very strong, was able to take a bottle and definitely had a personality,” Sylvia said. “She showed us every step of the way that she was determined to live.”
Determined to do everything they could to give their baby daughter a full life for whatever time Zoe had, Ryan and Sylvia turned to her care team at Children’s for guidance and education. “Our attitude was, ‘Let’s learn what we need to learn so we could bring her home,’” Ryan said.
Experts from a variety of specialties such as cardiology, pulmonology, orthopedics, neonatology, physical and occupational therapy, Zoe’s pediatrician and countless others taught the Bowens how to care for Zoe’s unique and complex medical needs. “We learned much more from Zoe, Sylvia and Ryan than we ever taught,” Children’s of Alabama pulmonologist Tom Harris, M.D., recalled. “They inspired us all!”
Their efforts helped give the family an abundance of happy memories of road trips, giggles and joy that filled Zoe’s short life. Most of all, they were at the Bowens’ side during Zoe’s final days. “We are thankful for the nurses and doctors who taught us, emboldened us and helped us navigate everything,” Sylvia said. “We couldn’t have cared for Zoe without the team.”
Zoe left this world shy of 15 months of age, an astounding achievement for any child with Trisomy 18 but one that speaks of what her parents call a God-given fighting spirit. The Bowens offer reassuring words for those facing the often overwhelming emotional and physical challenges of caring for a child with life-threatening medical needs: “We were given a gift. If you only look at the package and never look inside, you’ll never know or enjoy what you have.”
