Child With Rare Disease Continues to Make Progress
|Kristy Stager and daughter Bailey at
Eighteen months after a healthy, happy Bailey Stager of Troy was rushed to the UVMC Emergency Department in the middle of the night burning with fever, she continues to make slow progress as a single survivor of a rare disease.
Bailey’s dad, Chris, heard her making noise in her room around 2 a.m. Oct. 26, 2011, when he got up in the night.
He found his 15-month-old in seizure like activity. When he handed Bailey to mom Kristy, she grabbed a thermometer that gave a 106.9 degree reading.
“We put her in the car, and I knew I had to get her to the quickest place. The hospital was 10 minutes away and we didn’t have time to call 9-1-1, so we went straight to the ED at UVMC,” Kristy Stager recalled.
Bailey’s temperature was 107.1 when a team of doctors and nurses began working to lower the temperature and drawing blood as part of trying to figure out what was going on.
“I can’t tell you any of the doctors or nurses in the emergency room except for Dr. Pat. There were so many of them and never a time of just my husband and I and Bailey in the room,” Stager said.
“All of the doctors and nurses were very caring and continued to ask if there was anything we needed. We just kept asking, ‘What is wrong with our baby girl?’ and they were doing everything they could to find that out for us.”
Once the fever was down, the search for answers continued. The decision was made just over 12 hours later to transfer Bailey to Dayton Children’s. By then, Bailey’s eyes were closed, which would continue for a week as she slipped into a coma. Over the next six days and many tests, the medical staff narrowed the condition.
Bailey was diagnosed with Acute Necrotizing Encephalopathy of Childhood, or ANEC, an acquired brain abnormality. At the time, only seven cases had been documented in the U.S. and her chances of survival were considered low because none of the others had survived beyond a few days.
“My head was in the bottom of a bucket. She had gone from being perfectly fine to being unconscious for a week,” Stager said.
The Stagers were told Bailey, who woke up after seven days, had significant brain damage.
“I told him (husband Chris) she is still here, we will deal with what we have. I just wanted to hold her,” Stager said.
Bailey remained in Dayton Children’s until Dec. 7. During this time Kristy was teaching her daughter how to drink from a bottle again while other therapy was provided. After leaving Dayton Children’s, Bailey when she was moved to Cincinnati Children’s for two weeks of inpatient rehabilitation.
The family finally returned home Dec. 22, 2011, where Bailey again joined with brother, J.D. Harvey, age 8.
By then, Bailey had an army of followers, particularly those who had read about her story on Facebook at KP4BB (Keep Praying for Baby Bailey).
Family and friends arranged two fundraisers- a softball home run derby and a spaghetti dinner in Piqua – to help with expenses within days of Bailey’s rush to the ED. Others followed Team Bailey on Facebook, which included updates on her progress at the hospitals and after her return home. An account for
Bailey’s care is at Mainsource Bank offices in Troy under KP4BB.
“It was really encouraging for strangers who care, who want to help and support and pray. She is on many prayer lists,” Stager said.
Doctors said Bailey was setback to around age four months, losing her fine and gross motor skills as well as her muscle tone. She cannot sit up on her own and now has a brace that supports her spine from curving and a wheelchair that holds her straight up and down. She wears special boots to help her with weight bearing when others work on her standing as well as preventing her from developing a dropped foot.
Bailey also lost the ability to chew food and eats mostly pureed baby food.
At Dayton Children’s she sees a speech therapist who helps work on chewing again and also sees physical and occupational therapists. She also goes twice a week to the Rehabilitation Center for Neurological Development in Piqua for time in a gym setting and work with a therapist who is helping her with reach and arm use skills. Therapists from Riverside of Miami County and the county Health Me Grow program also visit once a week.
“All of the therapists Bailey has have been a wonderful addition to our family. We really appreciate the dedication and excitement they all have when they see her making improvements,” Stager said.
Doctors don’t know Bailey’s prognosis. “They said maybe similar to someone with cerebral palsy,” Stager said.
Bailey also now sports glasses after a visit to an optometrist when there were indications of possible sight issues.
The Stagers continue to update Bailey’s Facebook page. “We want people to see that we still have hope and share what Bailey is going through now,” Stager said.