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.
Liz Beaulieu is likely the only person in the world who can say she saved her child by falling down the stairs.
Her daughter, Arielle, was just 4 days old. Liz was carrying her downstairs when she slipped. Not sure whether Arielle had hit her head, she whisked her to her local ER.
“She seemed fine, and they said that she looked fine,” Liz says. Still concerned, though, Liz kept a close eye on Arielle over the next couple of days. That’s when she noticed something.
“I noticed the slightest flicker of her eyes,” Liz recalls, “and decided that I wanted to get it checked out.” She took Arielle back to the hospital, asking them to do a CT scan. The hospital demurred, but Liz insisted, telling them she needed the peace of mind.
“So they did the scan,” Liz recalls, “and they found an enormous tumor.”
Arielle had been born with a congenital intracranial teratoma (CIT)—a kind of germ cell tumor and one of the rarest of rare brain tumors. CIT grows rapidly, squeezing the brain and eventually taking over all of the space inside the skull. Very, very few children survive. …
When faced with a sick child, every parent in the world wants the same thing—the best care possible. Often, all it takes is a quick visit with the local health care provider. Occasionally, it means a trip to the local hospital or short stay at an academic medical center. In rare cases, obtaining the best care requires an extraordinary effort.
A mother finds herself researching the world’s best pediatric neurosurgeons. An uncle turns to YouTube to learn more about brain tumors. Physicians on opposite corners of the globe find ways to communicate and collaborate. And a family boards an air ambulance, embarking on a 7,000-mile journey, anticipating a marathon neurosurgery for their child and hoping for the best.
In December 2013, Mohammad and Hend Al Ansari, from Dubai, United Arab Emirates, found themselves in that rare group of parents. …