Courtesy Mary Huszcza/808 Photography(JACKSONVILLE, Fla.) — During Erika Jones’ pregnancy, doctors told her there was a good chance her baby girl wouldn’t be born alive.
The Jacksonville, Florida mom — who also is parent to two-year-old Audrey — had a 30-week ultrasound that spotted that something unusual on her baby’s brain. It was later found to be a large brain tumor.
“The doctor prepared us that this was really bad,” Jones told ABC News. “The prognosis was very poor.”
Jones, herself a nurse who works in neurology, said she knew enough to know this was “devastating.”
Just three months earlier, Erika and Stephen’s unborn daughter was diagnosed with Down syndrome. “After the initial mourning,” Jones said, “we made peace with it quickly and were so excited.”
Jones said the tumor “literally came out of nowhere. At the 26-week ultrasound, her brain looked completely fine.” At 30 weeks, the portion of her brain that was affected appeared “massive.”
Jones said she prayed.
“I don’t want to walk this path, I don’t want to sacrifice my daughter,’ I said. I imagined God just saying, ‘I’m so sorry and crying with us,'” she recalled. “We prepared ourselves for the worst and decided that she would have a meaningful life, no matter how short it might be.”
Abigail Noelle Jones was born August 6. The Jones’ thought she might die shortly after birth. She didn’t, and a few days later professional photographer Mary Huszcza took the photos.
An MRI after Abigail was born revealed the tumor had grown and was thought to be aggressive and cancerous. Doctors have told Jones chemo would likely kill baby Abigail and that an operation on the tumor would not prevent it from growing back. The Jones’ decided to take Abigail home with pediatric hospice.
“If she dies, I don’t want it to be in plastic box in a hospital NICU. It will be home with us, surrounded by love and in our arms.”
Every day that passes, though, gives the Jones a little bit more hope. Nothing has changed in Abigail since she was born and Jones said that to an outsider, it’s impossible to tell anything is wrong.
“She is the chillest baby ever. She just loves to be held. She watches your face, tracks it with her eyes.” She’s had her feeding tube removed and is gaining weight.
Jones said she knows Abigail will be healed, but it may come in death. “If He doesn’t heal her on earth, He will heal her the second she takes her last breath,” she said. “We know this is tragic, but Abigail’s life has a purpose.”
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