Omaha family braces for 2-year-old daughter’s second heart surgery

By Maddie Augustine

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    OMAHA, Nebraska (KETV) — Frankie Osborne, 2, smiling ear-to-ear, playing with her three siblings — it’s a sight parents Rachel and Keenan Osborne weren’t sure they’d have the chance to see every day.

“You have no idea that she’s been through what she’s been through because she’s just so happy and just loves and just, oh, she just radiates sunshine,” Rachel Osborne said. “We found out at our 20-week ultrasound that she had a heart defect.”

After multiple doctor transfers and a fetal echo, the family finally had an answer.

“That’s when we found out that she had to tetralogy of fallot with pulmonary atresia, VSD and MAPCAs, which, the MAPCAs is what the, like, most complex part of her defect,” Rachel Osborne said. “When we found out, I remember just like just crying right away.”

The couple said Frankie has extra branches from her heart to her lungs, but they’re unable to grow large enough for proper blood flow.

“She also has a tricuspid leak. In her tricuspid valve,” Rachel Osborne said. “She has the very large hole in her heart, and they said it is very large.”

It’s a complex and rare form of congenital heart disease.

“I was, like, scared, like terrified to give birth,” Rachel Osborne said. “So it’s like, she’s here. She’s safe here. Like, if I, if she’s born, then that’s when all the scary stuff happens.”

Frankie was born weighing only 5 pounds, 4 ounces, but her parents said she showed steady signs of strength.

“The day that we were supposed to take her home, on our way to the hospital on the day we’re supposed to take her home, they called, and they were like, Frankie’s turning blue. Like, very blue,” Rachel Osborne said.

The newborn was unable to maintain her oxygen levels, and Keenan Osborne said that’s when doctors made the call. At only 3 weeks old, Frankie would have her first major surgery.

“Her surgeon said that she was the smallest baby that he successfully performed surgery on,” Rachel Osborne said.

The couple said they knew their daughter had a long road ahead, but didn’t anticipate another major hurdle during the recovery process.

“She had suffered a massive stroke that caused the entire left side of her brain to be necrotic,” Rachel Osborne said.

Unsure of the long-term effects the stroke may have and working to overcome pain medication withdrawals, Rachel Osborne said Frankie remained in the hospital with daily care.

“She started recovering better or doing better,” Rachel Osborne said. “And so we felt more positive. We were, like, moving in the right direction. Everything was going better.”

However, Frankie wasn’t in the clear just yet. At nearly 3 months old, Rachel Osborne said Frankie needed a routine scan of her heart.

“We hear, like, them call a code over the intercom and they’re like, this is like lower level three MRI, code blue,” Rachel Osborne said. “And I looked at him, and I was like, do they let more than one child an MRI at once?”

Minutes later, Keenan Osborne says a nurse confirmed the couple’s worst fears. Frankie had coded and may need to start life support.

“Kiddos in her situation don’t always come off of ECMO because it reroutes all the blood in the body through a machine, and it’s very dangerous to clean and swap out,” Keenan Osborne said.

Shocked, the couple said they watched as doctors began flooding back onto their hospital floor. All of them surrounded Frankie.

“It was just like the craziest feeling to watch people do, like, literally like save your child right in front of you is beyond traumatic and beyond just insane,” Rachel Osborne said.

Against all odds, and just two weeks later, Frankie was able to go home.

“The biggest feat for us when we got home, I think was trying to help her learn how to navigate the world in a way that, like, worked for her,” Rachel Osborne said.

Every day since, Rachel Osborne said Frankie continues to hit her milestones. Even taking her first steps, despite uncertainty after her stroke. Now, nearly two years later, the Osbornes said doctors still don’t know what caused Frankie’s stroke or her code, but they know their daughter’s fight isn’t over.

“She truly is a fighter,” Rachel Osborne said. “She’s proved it time and time again.”

With the guidance of Frankie’s medical team, the couple said Frankie is now scheduled for her second heart surgery, but this one is in California.

“They actually specialize in the repair that Frankie needs,” Rachel Osborne said.

Rachel Osborne said the surgery will widen Frankie’s pulmonary arteries in the hope it will set her up for the ultimate surgery.

“They’re going to try and, like, pretty much fix her whole heart,” Rachel Osborne said. “That’s the plan. That’s why it’s a lifesaving surgery. That’s our biggest goal, is just to give her the best chance she has.”

The couple said Frankie will have at least a month long recovery in California after surgery.

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