Abigail’s journey: A trip to Boston makes tomorrow possible

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. Abigail’s diagnosis “I knew it was devastating,” Erika, a neurology nurse, recalls. “Our high-risk obstetrician sat us down in his office and said, ‘I’m so sorry. This is fatal.’” Other specialists — neurosurgeons and radiologists — agreed with the diagnosis. The Jones family had already overcome one hurdle earlier in Erika’s pregnancy. Abigail had been diagnosed with Down syndrome at 18 weeks gestation. “We said this is a good thing. We’ll have a special baby and take whatever challenges come our way,” recalls Stephen. But no one had expected the challenges the family would encounter over the next few months. “How do you ...
Source: Thrive, Children's Hospital Boston - Category: Pediatrics Authors: Tags: Diseases & conditions Our patients’ stories Brain tumor department of neurosurgery Dr. Alan Cohen Dr. Mark Kieran Source Type: news