(WHAM) - Iris Helfner and her dad Karl have quirky, back and forth phrases they like to say together.
One goes like this: "This is bubbs, not, buggers, but, buggers, with bubbs, and, cheese, with michael cheese please, with love and cheese and stink and poop and love."
The exchange might not make any sense to you, but it's how Karl knew that the staff at Golisano Children's Hospital had not only saved his daughter's life, but had also kept her brain function. You'll see how a little later. For now, meet Dr. Jill Cholette who was part of the team that saved Iris. Dr. Cholette is the Medical Director of the Pediatric Cardiac Care Center.
"She is a miracle. That is how I feel about her," said Dr. Cholette, when asked about Iris.
13WHAM News started asking about Iris on the day she was born. It was November 11th, 2011 (11/11/11) at 11:11 AM! We interviewed her parents on that day when Karl said "It's just odd 11, 11, 11, 11, 11, I mean what are the chances of that?"
That day in 2011, Karl and his wife Kaori found out their daughter would need heart surgery in the future. She had a rare defect called Ebstein's anomaly. But she was fine to go home and grow, be watched by doctors and practice that quirky exchange with her dad. While the exchange was just something fun for Iris, Karl knew that it could help when it came time for surgery.
"I knew someday she would be coming out of anesthesia and I'd need to know whether or not if she was 100 percent there," Karl explained.
That day came in April 2016. Iris was 5 years old. She had a scheduled surgery to replace the affected heart valve. Dr, George Alfieris had done the surgery and it had gone well. Since Iris was stable and recovering, Karl went to bed one floor away at the Ronald McDonald House within the Hospital. Not long afterward ,there was pounding on his door.
"There is a very frantic nurse who just looked at me and said, 'Come quick, your daughter's heart stopped,'" Karl recalled.
Dr. Cholette described what was happening. "She wasn't breathing, her heart wasn't beating, she had no blood pressure. I mean she was essentially gone."
When Karl got to the room, Dr. Cholette's hand was wrist-deep in Iris's chest, squeezing her heart to make it beat. The team had tried to shock Iris's heart but she did not respond so Dr. Cholette and Dr. Alfieris continued squeezing her heart by hand for 90 minutes until they got her onto a heart lung bypass machine (ECMO).
Iris needed surgery the next day and then she needed calm and to time to heal. Weeks passed. Karl longed to know if Iris had suffered any brain damage. Dr. Cholette explained that the stakes were high.
"I do remember dad, very appropriately being terrified that his little girl wouldn't be there," Dr. Cholette said. "It's one thing to start someone's heart again, but if neurological damage has been done, we have no treatment for that."
Karl begged them to lift Iris's sedation so he could whisper that quirky phrase in her ear to see if she would respond like all those times they had practiced.
"When she did, I was very, very happy," Karl remembered with a smile.
"It was a big moment for everybody," Dr. Cholette said. "We all took a deep, deep breath and there were eyes that weren't dry in the room."
There were more challenges after that: two strokes, needing a pacemaker and several more emergency surgeries. Iris had to learn to walk and talk again in both English and Japanese. Now, once again, she's a booking-loving second grader in Fairport.
"Iris is a testament to what we can do, specifically our hospital," Dr. Cholette said with pride.
"They look at her as if everything they ever learned had a purpose," Karl said. "And that happy endings out of the worst nightmares of your life certainly do happen."
Iris will need more surgeries in the future. She's just one of the reasons we ask you to donate to Golisano Children's Hospital or call into the Cares for Kids Radiothon this week. We will be broadcasting live from the hospital on Friday, February 15 as a part of the effort.