“She is happiness. Her smile truly lights up the room.”
That’s how Julia Snyder describes her 9-month-old daughter Frankie.
“For being such a sick baby, you would never know,” Julia continues.
What Julia is alluding to is the tough start Frankie had that has earned her the title “the medical miracle” when she visits her doctors for checkups.
Frankie was born via C-section at 39 weeks on August 26, 2021, weighing 7 pounds 11 ounces. Her parents were ecstatic to welcome her into the world.
By the time she was discharged from the hospital, Frankie had lost a few ounces, which is not uncommon. Babies are born with some extra fluid, so it's normal for them to drop a few ounces when they lose that fluid in the first few days of life. In fact, a healthy newborn is expected to lose 7% to 10% of their birth weight but should regain that weight within the first two weeks or so after birth.
However, as the days went on, Julia watched as Frankie continued to lose more and more weight despite normal feedings. Under the care of the family’s pediatrician, Dr. Daniel Graff at UPMC Children’s Community Pediatrics in Rochester, Pa., Frankie was having her weight checked every two days to keep a close eye on everything.
But by the time Frankie was 2 weeks old, she had lost nearly two pounds since birth and was down to just five pounds.
Not only that, but Julia noticed that Frankie had become lethargic and had diarrhea. With the onset of these new and alarming symptoms, Dr. Graff decided it would be best for Frankie to be transferred and admitted to UPMC Children’s Hospital of Pittsburgh. On September 9, she arrived at the Emergency Department, where she was immediately taken in and brought to the Pediatric Intensive Care Unit (PICU). She was admitted as failure to thrive. Children are diagnosed with failure to thrive when their weight or rate of weight gain is significantly below that of other children of similar age and sex.
“I was hysterical when they brought us up [to the PICU], but all of the staff in the PICU were amazing. The doctors and all the nurses checked on me constantly and every peep Frankie made someone popped in,” said Julia. “Of course, I had to retell Frankie’s story and was very upset, but the staff would just tell me ‘If you ever get overwhelmed, just say so and we’ll take a break.’ The nurse we had was so calming. They all really helped to keep me calm just as much as they were keeping Frankie calm.”
Frankie’s doctors conducted bloodwork and x-rays in an attempt to figure out exactly what was ailing her.
Then on her second day in the hospital, Frankie took another turn.
A Frightening Diagnosis
She spiked a fever of 104.2 degrees Fahrenheit and went into septic shock. At that point, after they were able to stabilize her, Frankie’s doctors decided to conduct a spinal tap to remove a sample of cerebrospinal fluid that would allow them to conduct additional tests.
The results of a spinal fluid culture indicated that Frankie had bacteria in the fluid surrounding her spinal cord and brain. She was diagnosed with Salmonella meningitis, a very rare form of meningitis caused by salmonella bacteria, and she was in critical condition.
“Meningitis is something you really don’t hear nowadays. We were shocked,” said Julia. “They considered her in ’salmonella take over’ – there was salmonella was in her spinal fluid, urine, stool, blood.”
Frankie’s care team was able to roll out that it was a hospital-acquired condition. They remained optimistic and worked quickly to treat her.
“I knew she was in the best hands possible,” said Julia.
Frankie experienced some blood clotting from the sepsis and meningitis and had a platelet transfusion. Julia noted that she “took to [the transfusion] very well, with her only being just over 2 weeks old.” She also began receiving twice daily shots of Lovenox®, an anticoagulant medication used to prevent and treat blood clots.
Once her blood tests came back negative for infection for 48 hours, Frankie had a PICC line (peripherally inserted central catheter), inserted so that she could receive IV antibiotics.
Frankie continued to slowly improve. During this time, Julia, who had another small child at home, would have to leave the hospital to care for that child.
“I would be at the hospital and go home around 7. It was a 50-minute drive to Beaver County where we live, and I had to go home to care for my other child and would come back first thing in the morning,” said Julia. “When I wasn’t [at the hospital], I was still calling all the time for updates on Frankie. I was so nervous but everyone was so patient and understanding given the situation. They were very informative and would even put the phone up to [Frankie] and tell her that her mom loved her. Even though I couldn’t be there 24/7, there were the nurses and the child life specialists – they would even bring books for our other daughter when she was there. For such a bad situation, they made it go as good as possible.”
After a week in the PICU, she had stabilized enough to be moved to a regular floor in the hospital. She was also able to start 2 ccs of formula after being on gut rest since admission. Over the next few weeks, Frankie underwent many MRIs, CT scans, and other tests to monitor the state of her infection and her progress.
After 15 days in the hospital, Frankie was released to return home with her PICC line still intact and still receiving the anticoagulant shots.
“Frankie Is Stronger Than Meningitis.”
Normally a child so young and with a PICC line would have to go to the Children’s Hospital Rehabilitation Unit (CHRU) at the Children’s Home of Pittsburgh & Lemieux Family Center on Penn Avenue down the street from Children’s. But since Julia had her Licensed Practical Nurse licensure, Frankie was released to home health with her family, explained Julia.
Frankie had her PICC line removed after about six weeks of at-home antibiotics and continued her anticoagulant shots until December 2021. She still gets monthly scans and progress checks, but she is doing well overall.
According to Julia, today Frankie is up to 19 pounds 5 ounces and is continuing to grow and meet developmental milestones. She loves being mobile – crawling and pulling herself up on the couch – and she is obsessed with her older sister.
“I owe Children’s Hospital my life. I think some people might not expect such personalized care with a big hospital. But they were honest and had one goal in mind and that was to get my baby better,” said Julia. “I cannot thank the 6A team and the PICU enough for saving my daughter’s life. God is stronger than all and our prayers were answered. Frankie is stronger than meningitis.”