For a little girl not expected to survive in the womb, three-year-old Keely Johnson from Ormond Beach is thriving and learning something new every day.
The toddler surprises nurses and visitors, pointing out a pentagon, hexagon and octagon. Next week, Keely will begin the Hospital/Homebound Program through Volusia County Schools, but already can identify colors and enjoys absorbing other information when her mom is home schooling her three sisters. She doesn’t let a tracheostomy (trach) tube, put in at just five hours old, or a feeding tube hold her back.
“She’s doing great,” Sandy Johnson said. “She loves books. You can read to her all day. She loves playing with her sisters and playing memory games where you flip cards and she finds the matching pictures of animals, cars or colors.”
Keely, whom her parents call their miracle baby, was born with Pierre Robin syndrome, a congenital condition that caused her to have a smaller-than-normal lower jaw and a tongue that falls back in the throat, obstructing the airway and causing difficulty breathing. The condition can interfere with swallowing and feeding. During Mrs. Johnson’s pregnancy, she had little to no amniotic fluid, impacting Keely’s development.
Born on Dec. 24, 2010, at Baptist Medical Center Jacksonville, where Mrs. Johnson had been for nine weeks, Keely was just two pounds and eight ounces. She was delivered in Baptist Jacksonville’s critical care OR right after birth. Immediately after, Keely was rushed to Wolfson Children’s Hospital’s Level III Newborn Intensive Care Unit, adjacent to the OR.
Mrs. Johnson and her husband, Lindsey Johnson, MD, have experience with children with medical needs. Dr. Johnson is a pediatric intensivist at Halifax Health Medical Center, working primarily in the pediatric intensive care unit (PICU). His wife was a nurse in the PICU at Wolfson Children’s Hospital in the 1990s, and at Halifax in the early 2000s in the NICU and ER.
At a routine ultrasound just weeks into the pregnancy, the Johnsons were told that Keely would likely not survive or that Mrs. Johnson would miscarry. They continued to get bad news throughout the pregnancy as Keely’s organs did not appear to be developing at a typical rate. But the Johnsons kept praying.
“We just put it in God’s hands,” Mrs. Johnson said. “I tell people she is a total miracle. I think all children are miracles, but this one went against all the odds.”
Keely’s Dad, Dr. Johnson, said Keely is “proof that what is in the textbooks isn’t necessarily true about what is going to happen to a child in utero.”
“She’s just a 100 percent a normal child in so many ways. She has some obstacles to overcome, but she’s very happy and playful and intelligent,” Dr. Johnson added. “We are ecstatic.”
They say they are “indebted” to the doctors, nurses and staff at Wolfson Children’s Hospital, Nemours Children’s Clinic, Jacksonville, and the University of Florida College of Medicine-Jacksonville.
Within days of her birth, Keely had a craniofacial procedure to correct her jaw condition. She will have more surgeries on her jaw in the future as she grows and doctors move toward removing the trach and feeding tube. She continues to see doctors regularly at Wolfson Children’s Hospital and Nemours Children’s Clinic in Jacksonville. Keely will be seen for heart monitoring services at the Wolfson Children’s Specialty Center in Daytona Beach, which opened last July.
Keely’s pediatrician, Salman Ahmed, MD, in Ormond Beach, has followed Keely since she came home from Wolfson Children’s Hospital at four months old.
“There was a time we were not sure she would be able to walk and she’s walking now – that’s a big milestone that she’s accomplished,” said Dr. Ahmed, referring to one of Keely’s legs being shorter from a congenital condition with her femur.
“She probably would not have come this far if it was not for the care she got at home, both by her parents and home health care nurses,” Dr. Ahmed added. “Most of the things she has (now) are more like problems that can be fixed.”
The Volusia County School System’s hospital/homebound program, according to Keely’s mom, is planning to help Keely learn even more and enhance her communication skills. She can pronounce some sounds and words already, and knows about 150 signs in sign language.
“I love sharing her story. I love that people can have hope,” Mrs. Johnson said.
The Johnsons also get help with Keely from some of their older children. Combined they have 11 children, including four at home, ages 9, 6, 5 and 3.