One little girl’s fight to survive

Leia pic.jpg

Austin (American Heart Association) – For Nick and Maddie Limon, an ordinary night turned into a life-threatening moment for their little girl.

Leia Limon was born on June 7, 2018. Nearly a month later, while her parents where putting her to bed, she started gagging. She ended up throwing up and her parents noticed traces of blood.

Leia’s family rushed her to the hospital, where they hooked her up to a pulse ox machine. That’s when they noticed her levels were less than half of where they need to be — a result that should have had Leia turning purple, but her coloration was completely normal.

More tests were done so that they could listen to her lungs and chest. A trip to a nearby children’s hospital would reveal the diagnosis: total anomalous pulmonary venous return (TAPVR) — a birth defect of the heart where oxygen-rich blood does not return from the lungs to the left atrium. Instead, the blood returns to the right side of the heart.

Leia would need to have immediate heart surgery.

Maddie and Leia were transported in an ambulance to fly to Dallas for the surgery. While en route, Leia began crying. Maddie reached out to hold her baby’s finger and felt Leia’s grasp weaken and she became unresponsive.

Paramedics began performing CPR on Leia as Maddie felt her last breath leave her little body. They were rushed back to the children’s hospital where Leia was taken to the emergency room.  

Leia’s parents made the decision to put her on maximum life support, ECMO. Her parents recall the scary moment, saying “They took her back and then they said they’d be back to let us know how the procedure went. Another two hours passed by — it seemed like a lifetime before they came back out. They let us know the procedure had worked to hook her up to the ECMO but there was a new problem, the amount of CPR she had received had caused internal bleeding. She was bleeding from everywhere — her nose, her bottom, her mouth, everywhere.”

Doctors reminded the Limons that Leia would still require the open-heart surgery, but needed to be stabilized — her body had to recuperate from the trauma of the CPR and the ECMO machine.

Once Leia was stable enough for flight, a special team was brought in to help make the trek to Dallas. “They got her stabilized and told us we couldn’t fit in the airplane so we would have to drive to Dallas.

“Our baby girl was separated from us and those four hours were the most difficult thing ever. I was going so fast that we beat the airplane there — we were separated from our baby girl. Thirty-thousand feet in the air — her first airplane trip ever.”

Once arriving in Dallas, it would be another two weeks on full life support to get Leia stable enough to operate. Leia’s heart surgery lasted 12 hours, and even though the surgery went well the doctors feared that her organs hadn’t received enough blood. An abdominal surgery to check her organs was performed and her intestines were placed in silo outside her tummy.

Fast forward to today, Leia has undergone open heart surgery, two exploratory surgeries, was on ECMO for 2 weeks, has a right paralyzed vocal cord, and even had a G-tube placed for her to eat and gain weight — which she no longer uses. Leia went from taking 13 to 15 different medications to none.

Leia is thriving with her “mended heart” and her family is always excited for another day with their little heart warrior.  

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