Sylvia and Levi Leffert thought they were welcoming a healthy, full-term baby into the world on June 15.
"We had no idea that any of this was going to be in our lives," Sylvia said while holding her precious baby, Johnny, in Riley's Simon Family Tower NICU on Thursday. "We had normal ultrasounds; we had multiple ultrasounds. And nothing was caught, nothing was abnormal, so it was definitely a shock when he was born."
Johnny was diagnosed with congenital diaphragmatic hernia (CDH) after birth, which, as Johnny's father, Levi, explains is rare.
"Our understanding from talking to the doctors up here is this is almost always prenatally diagnosed," Levi explained.
Dr. Isabella Eiler explained what that diagnosis means.
"Congenital diaphragmatic hernia is a defect that is in the muscle that separates the abdominal cavity from the chest cavity," Eiler explained. "It allowed his organs to come up into his upper chest cavity, and so that takes up space where the heart and lungs normally develop and it can cause the lungs to not develop as appropriately and large as it should. But luckily your lungs continue to develop until you're even seven years old."
Johnny was born in Evansville. Levi said shortly after Johnny came into the world, he and Sylvia sensed something was wrong.
"So we advocated for him," Levi explained. "The nurses agreed; they knew something was off with him too but couldn't quite pinpoint it. They decided to monitor him for about an hour and during that time, Sylvia and I kind of dozed off in our room. We were in a deep sleep and the doctor comes in and tells us, 'your kid's organs are up in his upper chest cavity. We had to intubate him and he has to go to Riley.'"
The next several hours were extremely intense as Levi headed north to meet emergency crews at Riley and Sylvia remained at the hospital where she delivered merely hours earlier to recover.
"The doctor actually pulls me in from the waiting room and sits me down and tells us that there's about a 50 percent survival chance. And I was like, what," Levi explained.
During surgery, Riley doctors discovered Johnny had a Type C defect.
"They were surprised to see that he was a Type C defect which means that 50 percent or more of his diaphragm was missing entirely," Levi explained.
Levi explained that doctors patched the hole up with a special material because it was too large to stitch.
"It's a GORE-TEX patch which is a material they use for waterproof boots," Levi explained "They actually patch over that hole because it's too big to stitch up and it bridges over it."
The Lefferts thought they were out of the woods but the next day brought another round of intense fear for their little boy's health.
"About 9:30 at night, I actually stepped out into the hallway and I called my parents and I called her parents and I said, 'hey, I just want to prepare you in case something happens because I feel like something's going to happen because he's not doing good,'" Levi explained. "About a half hour later, his oxygen just drops! Rapidly. Thankfully the amazing team of nurses, doctors, respiratory therapists, all of them, nurse practitioners, there must have been 10, 12, maybe 15 people in here and they're all working together like a well-oiled machine and his color started coming back. His O2 started coming back up. What they did was amazing. We witnessed a miracle that night."
Now, two and a half weeks after birth, Johnny continues to grow and get stronger. He no longer needs a ventilator to support his breathing rather a nose cannula.
"He's been doing awesome and we'll just slowly chip away at that to get him breathing room air like you and I breathe and getting him to a good spot to get to go home," Dr. Eiler explained.
Sylvia said she is forever grateful for the care her son and her family have received from Riley.
"They've just been just the most amazing people here," Sylvia said.
Levi echoes those sentiments and gives gratitude for God's presence on this difficult road.
"Credit goes to not only the medical team but to the greater man God himself too," Levi said. "I think that this experience has really strengthened our faith."
Related Stories
Related Locations
