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Craig and Hannah Chaney of McKinney, Kentucky truly have a miracle baby. They didn’t have an easy road to pregnancy, and were first told they could never have children. When the couple finally proved the doctors wrong, Hannah was in a scary car accident.

Due to the accident, the couple’s son, Samuel Kase Chaney came early in 2015. While this was a blessing, the bumpy road was far from over. At just two weeks old, their baby would turn blue.

Terrified, the parents rushed Kase to the hospital. The ER doctors transferred Kase to a University of Kentucky Pediatric Emergency Center, where all tests came back negative. The doctors didn’t know what to do, and sent the baby back home with a diagnosis of a virus. The parents were taught how to perform sternum stimulation should he have another “blue spell”.

Several weeks later, the spell happened again. Hannah was able to get him breathing again, she and rushed her baby to the hospital. She was told he couldn’t be seen by the doctor for a few hours, and she refused to wait. She packed up her baby and headed to the Pediatric Emergency Center. But by the time they got there, Kase was completely back to normal.

The cycle repeated again, and the couple wound up back at the hospital with their son. Just like the previous time, he was back to normal by the time they were seen. But this time, as a nurse drew some blood, Kase had another spell.

Finally able to witness Kase’s symptoms firsthand, hospital staff realized the baby boy was experiencing cyanosis. It’s a condition where poor circulation or inadequate oxygenation of the blood causes the skin to turn blue.

Kase was admitted for eight days for observation and testing, during which a chance encounter set Kase’s treatment into motion.

A doctor, looking for another patient’s family, entered Kase’s room by mistake. As he apologized for his error and started leave the room, Hannah asked him a question that made him stop in his tracks.

“Can you fix blue babies?”

As Hannah explained Kase’s mysterious condition, the doctor smiled, held out his hand, and introduced himself as Dr. Krishna Pancham, a pediatric pulmonologist.

“I’ll be your son’s doctor,” he said.

“When I first saw Kase, he seems to be just like any other normal child – born healthy, no issue during his birth and growing and developmentally meeting all the goals,” said Dr. Pancham. “But after talking to the family, I realized how dangerously sick he was from a respiratory standpoint. He had intermittent dead spells when he was turning blue with oxygen saturation dropping into 40’s — normal levels are 90-99 percent. These events were not just scary for a family but also for any health care provider.”

Three months later, Kase was diagnosed with laryngotrachobroncheomalacia. His entire airway was collapsible from above his voice box to the bottom branches of his bronchi. Kase’s doctors collaborated with other doctors around the world about his condition and prognosis. There wasn’t a child alive that had Kase’s condition.

“Just because you’re hearing negative things, you don’t have to let that sink into your heart,” said Hannah. “We just decided to ‘speak life’. Finding those positives is how we made it through…”

This positive outlook influenced every conversation about Kase, even as his oxygen levels dropped daily.

“The question wasn’t ‘how many times did Kase try to die today’, but rather ‘how many times did Kase defy that?'”

After being told initially that Kase might not live past six months, he is now a lively, inquisitive three-year-old. He has been in the hospital over 200 days of his life, but he still has plenty of normal childhood experiences, including riding the combine with his dad, riding on parade floats and visiting the pumpkin patch with ventilator in tow.

“Something we take peace in,” said Craig. “Just listening to him breathe.”

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