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.
“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 function when you realize you might only get a moment with your child?” asks Stephen.
Erika and Stephen decided to make whatever life their daughter had a great one. “We didn’t want to put her through any pain, stress or testing. We wanted her to have a life full of love, snuggles and family,” says Erika.
After Abigail was delivered, she was fat, pink, hungry and alert. “We knew there might not be a tomorrow. Everything else stopped,” says Stephen.
Erika and Stephen never put their daughter down. They slept with her. They took her to the ocean, so she could feel her toes in the sand and salt water.
For those first few weeks of Abigail’s life, her parents wondered when she was going to die, which moment might be her last.
But Abigail did what most babies do. She ate. She slept. She wiggled and squirmed. She tracked her parents with her eyes.
We knew there might not be a tomorrow. Everything else stopped.
Erika started researching pediatric brain tumors and connected with Liz Beaulieu whose daughter Arielle had been given a diagnosis similar to Abigail’s shortly after Arielle was born. Today, Arielle is a healthy 2-year-old. “Get a second opinion,” Liz told Erika.
When Abigail was six weeks old, she had another MRI. There were some changes, and her head had gotten smaller, indicating reduced pressure on her brain.
Erika sent the MRI scans to Dr. Mark Kieran at the Dana-Farber/Boston Children’s Cancer and Blood Disorders Center. “I don’t want to give you false hope, but I think we should talk to Dr. Cohen and see if he can biopsy this.”
So Dr. Alan Cohen, neurosurgeon-in-chief at Boston Children’s, looked at the images. He called Erika and asked her a few questions. Is Abigail eating? Yes. Is she alert? Yes. Is she moving? Yes. What medications is she taking? None; breast milk.
“The clinical picture didn’t quite match the scans,” recalls Cohen. “One principle that’s always guided me is to remember we take care of patients, not X-rays. Abigail was given a death sentence because her MRI showed what appeared to be a large malignant tumor in the left hemisphere of her brain. But she wasn’t behaving as if she had a malignant brain tumor.”
He phoned Erika and told her, “This may not be a death sentence. There is enough question about what this could be. I think we should biopsy this and find out what it is. There’s a possibility we can remove it.”
“If your baby is going to have brain surgery, why not have the best of the best do it?” asks Stephen.
So the couple packed their bags and headed to Boston. Cohen introduced himself to the couple in the MRI waiting area at Boston Children’s on Oct. 8, and said, “Let’s do the surgery tomorrow.”
The Jones family agreed with Cohen, deciding if it looked like a nasty tumor the surgeon wouldn’t remove it, which would minimize Abigail’s suffering.
The surgery was a success. Cohen removed the tumor, and pathology results showed it was benign.
In her blog, Erika writes, “Joy. Gut busting, yelling from the rooftops, hugging neurosurgeons, tears, tears and more tears. My daughter is going to live. LIVE! Literally I cannot hardly believe it.”