They noticed the wires from the permanent pacemaker to the heart had worked their way up toward the skin. Adetayo learned what was causing the multiple infections. Though Eva was back to square one – wearing a temporary pacemaker again until she was ready for a permanent one – Dr. This allowed the infected “pocket” to heal so the Cardiothoracic Surgery team could safely place a permanent pacemaker later without ongoing infection risk. The permanent pacemaker and leads connected to the heart were removed, and new temporary pacemaker wires were placed and turned on again. It was left in place and gradually turned down over the next couple of days however, Eva started to show signs that she couldn’t tolerate the low heart rate, so her pacemaker was turned on again.Įva was then taken back for her sixth surgery. Following the procedure, it was decided that the permanent pacemaker would need to be removed. Oluwaseun Adetayo, Children’s Division Chief of Plastic Surgery, were involved in Eva’s fifth surgery, in which they cleaned up the incision and began investigative surgery to identify the cause of the recurring infections. Ali Ibrahimiye, a pediatric cardiothoracic surgeon, and Dr. We put our hope in God and in the hands of her medical team.” More Surgeries – and a different approach This was the ultimate high to low for our family. Her pacemaker got infected, and she was heading back to surgery.

“Then, as I was changing my daughter’s diaper, I noticed drainage from her sternal incision. Her doctors even told us that she was on her pathway home, which was very reassuring. “She wasn’t on a ventilator, and she wore clothes for the first time, which was an exciting ‘normal baby’ moment for us. Finally, when Eva was 2 months old, she reached her goal weight of 6.6 pounds and underwent another surgery in November to receive her permanent pacemaker. Setbacks along the way required additional surgeries. Her cardiac surgeon installed temporary pacemaker wires since Eva wasn’t big enough for a permanent pacemaker. Later that evening, Eva - at less than one day old - had her first heart surgery. She weighed 4 pounds, 12 ounces and was delivered via C-section at 36 weeks. 23, 2020, the Johnsons welcomed Eva into the world. Jeffrey Robinson became her primary cardiologist. Jennifer Winters was assigned to Eva’s case, reading the ultrasounds, and Dr. Because of my prior experience, and since I had the tendency of developing lupus during pregnancy, our baby, Eva, and I were monitored closely with weekly ultrasounds.”Īt 20 weeks, Eva’s heart went from normal to second-degree heart block to complete heart block, prompting Children’s Cardiology team to recommend fetal heart ultrasounds every week. Michael Barsoom, the same high-risk OB-GYN who delivered Simone. “When I was nine weeks along, I worked with Dr. “We were surprised, happy, and nervous at the same time,” said Monae. Monae and Phillip wanted to give Simone a sibling, and after multiple attempts to have another baby – and enduring a miscarriage along the way – the Johnsons learned they were expecting again. During the pregnancy, Monae developed lupus, an autoimmune condition that also affected the child’s heart, leading Monae to wonder what her chances were of developing the condition again in future pregnancies. Eleven years ago, they welcomed their beautiful daughter, Simone. Monae and Phillip Johnson dreamed of having children. Allied Health & Other Healthcare Professionals.Emergency Nursing Pediatric Course (ENPC).Pediatric Emergency Assessment, Recognition and Stabilization (PEARS).Pediatric Advanced Life Support Courses (PALS).Speak Up!: Making Your Child’s Care a Safe and Positive Experience.See a provider from the comfort of your own home.

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