Saylor celebrates her first birthday this month after being born premature at 31 weeks in a south Florida hospital. She was diagnosed with tracheoesophageal fistula and esophageal atresia, a condition that occurs when a baby’s esophagus (the tube that connects the mouth to the stomach) does not develop properly. It affects a baby’s eating and breathing. It is somewhat rare, impacting one out of every 3-4,000 births.
Saylor was transferred to Johns Hopkins All Children’s Hospital in St. Petersburg, Florida, in February 2021 by the hospital’s LifeLine Critical Care Transport Team, which provides round-the-clock specialized transport care to critically ill newborns, infants and children. Saylor also needed special medical care from the hospital’s Esophageal and Airway Treatment (EAT) program and had a long stay in the neonatal intensive care unit (NICU). The EAT program at Johns Hopkins All Children’s Hospital specializes in treatment for infants, children and young adults with complex esophageal and airway problems.
“It’s been a long and complicated road,” says Saylor’s mom, MaryBeth. “She needed emergency surgery within the first 24 hours of her life. She had a rough time and did not seem to be recovering. After some searching, we found Dr. Jason Smithers and the EAT program at Johns Hopkins All Children’s Hospital. That was a game changer for us. He determined she had severe tracheomalacia, which caused her windpipe to collapse. As soon as she was stable enough, she ended up having another 12-hour surgery.”
“Saylor was dealing with several medical issues when she arrived here,” Smithers says. “In addition to esophageal atresia, she was suffering from chronic lung disease related to prematurity. She also had a floppy trachea that was collapsing a lot.”
Through several surgical procedures, Smithers and the EAT team were able to put Saylor on the road to recovery.
“Throughout her stay at Johns Hopkins All Children’s, I was nervous and a little scared, but also felt very comfortable because the medical staff always involved me in daily rounds. They all spoke with me, not at me. The entire team made me comfortable and confident in Saylor’s care and treatment plan,” MaryBeth says.
“On the day she was discharged, I got special T-shirts for the doctors and nurses. The shirts have a quote from Shakespeare, ‘Although she be but little, she is fierce.’ She has had a lot to deal with and has always pulled through,” she says.
Shortly after Saylor was discharged in February, she was readmitted for more surgery. Today, she is at home and still on oxygen, but her lungs continue improving. Saylor’s care also includes a cardiologist due to pulmonary hypertension, but with treatment she’s doing much better. She is also seen at the Johns Hopkins All Children’s outpatient center in Fort Myers since she is bilaterally deaf and has been fitted with hearing aids.
“Her outlook for a healthy life is a good one, thanks to the team at Johns Hopkins All Children’s,” her mother says.
*Presented by Johns Hopkins All Children’s Hospital | Originally Published in the December 2021 issue of Tampa Bay Parenting Magazine.