CHARLOTTE, NC (FOX 46) - One of the smallest patients to ever survive surgery for a rare condition is right in our backyard, and so is the medical team that did the initial surgery on the 4 pound baby.
Baby Olivia, at nearly 7-months-old, has already lived a lifetime of medical challenges. She was born with a rare heart condition where the tricuspid valve doesn't form properly, a condition called Ebstein's Anomaly.
"Which means that the right side of her heart wasn't formed properly," Meagan Ferguson, Olivia's mother said. "While I was pregnant she also developed something called fetal hydrops, which is collections of fluid so she had collections of fluid around her heart and lungs, and so the outlook was really bad at that point."
"We were just scared because we didn't know what to expect," Jonathan Ferguson said, Olivia's father. "We didn't know if we were going to be bringing her home. We didn't know if she was going to make it."
And as long as she still had the fluid around her heart, surgery was off the table.
"Kind of miraculously the hydrops went away on their own and so the cardiologist said that they could operate."
At eight days old baby Olivia had open heart surgery at Levine Children's Hospital.
"I can tell you there's probably a handful of surgeons who can perform this surgery in the world," Dr. Gonzalo Wallis said.
Dr. Wallis, a pediatric cardiologist, is speaking of his counterpart, Dr. Paul Kirshbom, who was one of the doctors to perform the surgery on baby Olivia with a condition that has a 25 to 30 percent mortality rate.
"Having to operate on a baby like Olivia with this diagnosis and then on top of that you add in her size which complicates things immensely having to suture and operate on a baby that is this size you can only imagine the size of the heart is miniscule...so you have to be highly skillful."
Thankfully, the surgery went well but the recovery was touch and go.
"It was just rough to watch her swell. For example, she had a lot of problems with fluid after the surgery and so she would swell up to double the size even though she was only four pounds and so just watching those swings while the doctors are trying to figure out how to alleviate the fluid," Jonathan Ferguson said.
After some rough patches and set backs, baby Olivia kept fighting back and was finally able after three months in the ICU to head home with her parents and big brother Patrick.
"That was a long time in the hospital so it was a big relief. It was scary to come home with a baby who has…she has oxygen and she has a feeding tube and monitors and things like that but it was nice to come home and just be a family together...all four of us together."
During a follow up visit Dr. Wallis, who was heading post surgery care, said baby Olivia was hitting the necessary milestones as she geared up for her second surgery to replace a tube between the aorta and pulmonary artery.
"As she grows that tube stays the same size it won't grow with her, so less blood will be able to go to the lungs...so at this point as she grows this tube will have to be up-sized."
Since FOX 46 Charlotte met Olivia she has had her second surgery and continues to defy the odds.
"She's a little miracle," Meagan Ferguson said.
A miracle who had the Ferguson family praising the entire cardiologist team and everyone they've encountered at Levine.
"Dr. Maxey was amazing to do the surgery but the whole staff here was just incredible...and the ICU especially," Meagan Ferguson said.
"You know we really felt like the Lord was with us in this whole thing, I mean, He gave us peace and comfort that we probably shouldn't have had the right people at the right times come in with the right ideas," Jonathan Ferguson said.
It's been about a month since Olivia's second surgery and she's doing well. Now, she still had a long road ahead but she's a fighter. After all, she is the smallest surviving baby to be successfully treated for Ebstein's Anomaly.