From the time Erika Jones was 30 weeks pregnant, she and her husband Stephen prepared for an excruciating eventuality. The Jacksonville, Florida, couple was told their daughter would die before or shortly after her birth. They arranged for pediatric hospice before Abigail was born. They made a decision tree factoring in clinical scenarios from intubation to a do-not-resuscitate order. They planned to scatter Abigail’s ashes on a Florida beach.
“We didn’t plan for this scenario,” says Erika, quietly glowing and cooing at the healthy newborn in her arms.
When Erika was pregnant, an ultrasound detected a large mass — thought to be a highly malignant brain tumor — in the left hemisphere of Abigail’s brain. Erika was referred for a fetal MRI, which led specialists to diagnose Abigail with a fatal brain tumor.