When most people think of infants in the Neonatal Intensive Care Unit (NICU), the first image that comes to mind is tiny babies who are smaller than your hand. For NICU mom Donna, that’s not the picture she sees when she thinks of her son Johnny, born at 9lbs, 1oz.
Johnny was the second child born to Donna and Robert. Born full-term via C-Section on December 19, 2007, Johnny entered the world with wet lungs – a typical issue for C-Section born babies. After two days in the NICU at their local hospital, Johnny’s parents discovered that their son was developing an infection that needed immediate attention and were told he needed to be transferred to a hospital that had the proper equipment to keep him alive. Plans were made for Johnny to be transferred to Orlando Health Winnie Palmer Hospital for Women & Babies via helicopter, but due to his condition rapidly becoming more dire, a transportation unit arrived to pick him up with a respiratory therapist who would be able to treat his needs during transport.
On the way to Orlando Health Winnie Palmer, the nurse on board called Dr. Douglas E. Hardy, MD three times. In a typical transport, the nurse will call the doctor once, but Johnny “was not enjoying the construction on I-4. Every time we hit a bump, it caused some trouble,” as the nurse recalls.
Before they even arrived at the hospital to meet with the doctors carrying for their newborn son, Donna got a call asking for permission to put Johnny on a life-supporting Extracorporeal Membrane Oxygenation (ECMO) machine. As soon as Johnny arrived at the hospital, his team of caregivers immediately began to stabilize his body as well as carefully set-up and prime the ECMO pump with fluid and blood. At just two days old, Johnny then underwent surgery to attach the ECMO pump to his body, giving his heart and lungs the support they needed to keep him alive.
Because Johnny was full-term, his needs were different than that of a premature baby. He was the first baby in the Orlando Health Winnie Palmer NICU to have a feeding tube while on ECMO. The nurses got to know him as a particular baby who was very sensitive to light, noise and any little thing that would get his attention. Even cleaning staff coming in to change out a trash bag would make his numbers fluctuate.
Although the ECMO machine was giving Johnny the heart and lung support he needed, it seemed at first that he wasn’t doing too well, and doctors began to discuss a possible lung transplant if there was no improvement. By Christmas Day, Johnny started showing signs that he was beginning to breathe on his own, leading his care team to plan to take him off of the ECMO machine within 48 hours.
Suddenly, a bubble was discovered in Johnny’s machine, changing his plan of treatment once again. An uncontrollable occurrence that can sometimes happen to an ECMO machine, this new bubble meant a decision had to be made between taking Johnny off the ECMO, or temporarily putting him on a mobile machine while they removed the bubble. If they chose the latter, it would cause Johnny to start the entire process all over. Because the doctors had already felt he was close to coming off the ECMO machine, they deciding to take him off of it right then.
“As a mother, it was the best and worst day you could imagine. All I could think of was that if something didn’t work, I didn’t want my baby passing away on Christmas Day.”
After four days on ECMO, Johnny began to come off the machine’s support, and did so very quickly. Afterwards, he stayed in the NICU for monitoring while his lung strength grew and he learned how to eat on his own.
As a full-term baby, Johnny was a little more restless than his fellow NICU friends. To keep him entertained, the nurses would take him on “field trips” around the NICU – sitting with them at the nurses’ station and traveling around to visit the other babies on the ECMO machines he used to be on. Johnny would wake up each day with a smile on his face and was a joy for the staff of the NICU.
After 45 days of being in the NICU, Johnny finally came home on February 3, 2008. To the Payne family, the nurses, doctors and staff at Orlando Health Winnie Palmer are extended family. “I attribute it all to them, if it weren’t for them, Johnny wouldn’t be here,” says Donna.
After Johnny left the NICU, his parents began to learn more about what his prognosis actually was 45 days earlier – the doctors originally didn’t think Johnny was going to come out of this. As a full-term baby, there really was no clear explanation as to why Johnny had issues common of being born premature. According to Dr. Hardy, just a ten-minute difference in time of getting Johnny to Orlando Health Winnie Palmer could have completely changed his story. “We credit everyone there for him being okay today. if everyone didn’t make the decisions when they did, it definitely could have gone differently,” says Mom.
Johnny left the hospital with chronic lines and holes in his lungs from the efforts made to save his life. Doctors told Donna and Robert that his lungs would naturally recover over time, up until the age of 12, but only a year later, an x-ray showed that his lungs had healed fine.
During his time in the NICU, Johnny made himself known as a “zero to sixty baby,” as one moment he would be fine, and one little thing could make his numbers go crazy. Today, Donna says he is just the same. Johnny is now 12 years old and has no medical issues. He loves to play baseball and is in the gifted program at school. Just like when he was in the NICU at less than a month old, he still smiles when you wake him up in the morning. “He’s our miracle baby,” says Mom.