When a Kentucky couple’s baby turned blue, doctors couldn’t seem to figure out what was behind the “dead spells.” But it kept on happening and things weren’t looking good. Then a “mistake” sent a new doctor to their room.
Craig and Hannah Chaney of McKinney, Kentucky certainly didn’t have an easy road to pregnancy. At first, doctors said they’d never even be able to get pregnant. Then, when the couple proved them wrong, a car struck Hannah.
As a result of the accident, the Kentucky couple’s son, Samuel Kase Chaney, showed up early in 2015. Unfortunately, though, their troubles were far from over.
Craig and Hannah were loving life with their newborn son, Kase. But at just 2 weeks old, their baby turned blue.
The poor child cried uncontrollably, while his face went a scary shade of blue and white rimmed his mouth. Terrified, his parents rushed him to the hospital. The ER doctors transferred Kase to a University of Kentucky Pediatric Emergency Center, where all tests came back negative.
With no obvious cause for Kase’s symptoms, the hospital sent him home with a diagnosis of a virus. They gave Craig and Hannah instructions to perform sternum stimulation should he have another spell.
A few weeks later, Hannah was changing her son’s diaper and the baby turned blue in the face again and stopped breathing. Hannah got her son breathing again with CPR but the boy’s doctor wouldn’t be able to see him until later in the day.
There was no way the terrified mom was waiting that long. Again, she packed up her infant son 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.
The hospital decided to keep Kase there for eight days of observation and testing. And that’s when God answered Craig and Hannah’s prayers, using a simple mistake to deliver just the specialist Kase needed directly to them.
One day during their stay, a doctor popped into Kase’s room. He immediately realized he was in the wrong place and apologized to Hannah and Craig. The doctor was actually looking for another patient’s family.
Hannah, however, was feeling bold and decided to ask this doctor a pointed question before he left the room.
“Can you fix blue babies?”
The heartsick mother went on to detail all her baby boy had been through. Was there any way this doctor could crack this bizarre medical mystery?
The man smiled and introduced himself. Dr. Krishna Pancham is a pediatric pulmonologist and was just the specialist this family needed.
“I’ll be your son’s doctor,” he said.
This chance encounter turned into an answered prayer. Dr. Pancham could see why Kase’s issue was so hard to treat.
“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,” he said.
But the more information Hannah shared, the more Dr. Pancham realized how dire the situation truly was.
“After talking to the family, I realized how dangerously sick he was from a respiratory standpoint,” Dr. Pancham explained. “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.”
A few months after admittance to the hospital because their baby turned blue, Craig and Hannah finally had a diagnosis for their son’s condition. Their precious baby turned blue due to laryngotrachobroncheomalacia. The big, scary word means Kase’s entire airway, from his voice box to the bottom branches of his bronchi, was collapsible.
And as Kase’s doctors consulted with other specialists from all around the globe, they realized he was the only child currently alive with this condition!
Usually, infants with this problem were “happy wheezers” who didn’t require treatment and eventually outgrew the problem as the tissues that support the airways grow and strengthen. But Kase’s condition was different.
“Unfortunately for Kase, he had a severe condition requiring surgery, ultimately requiring a tracheostomy and being on a ventilator to keep his airways open until his airways matured,” Dr. Phillip Bernard explained, another specialist highly involved in Kase’s critical care.
After his diagnosis, Kase spent another 98 days at Kentucky Children’s Hospital. It was a scary time and it would have easy, even understandable, for Hannah and Craig to let worry consume them. With multiple surgeries, treatments, and procedures ahead, they were warned Kase may not live past 6 months.
But because of their strong faith, the couple chose to trust in God and remain positive.
“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 those 100 days.”
And the decision to remain positive and faithful was a very intentional one. At every turn, they faced terrifying odds. But Craig and Hannah remained committed to speaking life.
“The question wasn’t ‘how many times did Kase try to die today’, but rather ‘how many times did Kase defy that?’” Hannah explained.
And in a situation where so much was out of their control, Hannah and Craig focused on the things they could do.
“If you’re going to send me home with a medically fragile baby, I want to be able to take care of him,” Hannah pointed out.
Rather than leave everything to the doctors and hospital staff, the couple learned all they could about Kase’s condition and how to care for him.
“I can’t help but think about how important the education is, and to make sure that parents leave educated,” Hannah said. “I’m a social studies teacher and Craig’s a farmer, and we can tell you everything about a trach change or a g-tube.”
Hannah and Craig’s positivity and willingness to help had a huge impact on Kase’s treatment.
“Kase’s parents were part of the healthcare team,” said Dr. Bernard. “They spent a great deal of time doing their own reading as well as engaging with the doctors and nurses at KCH about Kase’s episodes and documenting exactly what was happening when he had the spells.”
The boy’s family and hospital staff worked together seamlessly, all united by the same goal — to see Kase overcome. And the family’s positive outlook couldn’t help but inspire and motivate the doctors.
“At one point in his care, Kase was so sick that palliative care was involved. But his parents never lost their faith,” Dr. Pancham recalled.
To Hannah and Craig, the hospital staff was an extension of their own family. They were there to support and comfort them during one of life’s toughest times. To have such a caring team was a blessing.
“It was their arms that would just wrap around me for over 98 days and be the arms that could hold me when my family couldn’t because they were so far away. They were the superheroes who hugged us and told us it would be ok,” Hannah said.
And her husband felt the same way.
“We’re cared about here,” said Craig. “You don’t get that everywhere.”
It had been a long and tumultuous road since Hannah and Craig’s baby turned blue. But finally, things were looking up.
Kase was the youngest child at the hospital to have his airway reconstructed. But the procedure took his air passage from 18% to 80% open!
And despite his rocky start, Kase’s progress continues to impress his doctors. He’s now a cheerful, active 3-year-old and will soon have his tracheal tube removed — a full eight years ahead of schedule!
Kase’s medical needs and equipment still require special care. But his family is just so thankful for all of God’s provisions.
“While at KCH, we have been blessed with excellent nurses and wonderful doctors, but above all, we are very thankful to God each day for life with Kase,” said Hannah.
And with their precious boy now at home with them, Hannah and Craig take time to appreciate the little things.
“Something we take peace in,” said Craig. “Just listening to him breathe.”
No matter what trials you face, we pray this real-life overcomer story will inspire you to speak life. And remember, God is still in the miracle business!
Photo courtesy: ©Thinkstock/Axiara
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