Kokomo family tested by baby's rare medical condition

KOKOMO, Ind. (AP) - Inside the Butler home is a small room with walls painted light blue. In that room is a crib with a large stuffed yellow duck tucked in the corner. Placed across the crib bars is a quilt.

There's few baby clothes hanging in the closet; perfect for a baby boy.

"This room, it's not totally done," Dennis Butler said. "But if they called tomorrow, this room not totally being done sure as heck isn't going to keep us from bringing him home."

The call Dennis hopes for would come from the neonatal intensive-care unit at St. Vincent Women's Hospital where his son, Cameron Duke Butler, has spent the last 9 months of his life because of a rare medical condition.

Since Cam's birth on Aug. 24, 2015, he's only seen the walls of the pediatric and NICUs at Peyton Manning Children's Hospital in Indianapolis. But his parents, Dennis and Tiffani Butler, are looking forward to the day when they can show their son his very own room.

"It's got his crib. It's got his dresser and it's got his TV," Dennis said.

And that's all Cam needs in his little "man-cave," Dennis added while embracing his wife in the nursery room before telling Cam's story, which began in 2015 just before he and his wife learned the sex of their baby.

Tiffani remembered what happened in detail after the doctor informed her she would have a boy.

"I tried to keep a calm face," she said.

The couple joked about Tiffani's desire to have a girl.

"I literally said, 'It's a boy, but at least it'll be healthy,' not even thinking that anything would be wrong," Tiffani said.

Shortly after learning the sex of the child, Dennis said he could sense something was bothering the nurse who took the ultrasound.

"She left and we waited on the OB/GYN to come in," Dennis said. "She finally showed up and told us that they suspected that he had a condition called congenital diaphragmatic hernia."

At that moment, their excitement froze and worry crept in. For Tiffani, this was her first child. And for Dennis, the father of a now 13-year-old, the thought of possibly losing a son shortly after birth weighed heavily on the family.

"We were overcome with fear; fear of the unknown, as our little guy wasn't even here yet and he has a problem," Dennis said.

Cam had a hole in his diaphragm that allowed his stomach organs to migrate into his chest. These organs usually migrate into the chest cavity during the child's vital lung development stages. The condition, also known as CDH for short, caused Cam to have underdeveloped lungs, while also pushing his heart over to the right side of his chest.

The cardiologist the Butler's met with following the ultrasound said Cam had no chance of survival. Tiffani's baby shower was scheduled for the Saturday before that meeting. But because she was unsure of the severity of the situation, she had it cancelled.

"At that point I was like, how can I sit through a baby shower and get all these gifts," Tiffani said. "If he's not going to make it, that's going to be even more heart wrenching for me. So we never had a baby shower."

The following weeks consisted of more tests, leading up to a meeting where doctors provided more insight to Cam's chances of survival.

"Everyone was at this meeting," Dennis said. "My parents, Tiff's parents, my sister, along with Tiff's brother and about 20 doctors and nurses."

During the meeting, Dennis said the doctors prepared to tell them Cam's chances of survival, but he immediately stopped them.

"I explained to the doctor that this is a Butler and that he was a fighter," Dennis said. "He was going to surprise them and prove them wrong. . He is either going to make it or he wasn't and as far as we were concerned that was a 50/50 chance."

Dennis said he knew the doctor's odds would be much worse, and he just didn't want to accept that.

Leading up to delivery, the hospital tried to prepare the Butlers for every possibility. When Cam was born at 8:24 a.m. Aug. 24, 2015, doctors were already prepared to place him on a breathing machine within an hour.

But Cam, being the fighter he is, did much better than expected. His lungs worked on their own for 15 hours before he needed to be placed on the hospitals heart and lung bypass machine.

Dennis boasted that it was Cam's way of showing the doctors what a Butler is made of.

For the next several months, Cam underwent many more tests. While Cam faced more complications, he ultimately pushed through.

Dennis works for Fiat Chrysler in Kokomo and is an ambassador for UAW Local 685. He spent many days over the last few months driving back and forth to Indianapolis from Kokomo with his daughter, Maddie, to visit Cam as often as they could. His wife, Tiffani, who quit her job to be by Cam's side in the hospital, said this experience has strengthened the family's faith, and brought them all much closer together.

"It's amazing what a little boy can do to bring so many people together," Tiffani said.

And, although Cam is still fighting day-to-day to breathe on his own, the Butler's have faith that one day soon they'll be able to bring him home and he'll get to lie in his own bed, in his own room.

Cam's story isn't near being finished. Dennis says he realizes how fortunate they are. And for that, the Butler's are grateful.

"We know we're blessed," Dennis said. "I almost feel bad saying it, but we're the lucky ones. . There are people out there that have not had the benefit of their child surviving, and that's a reality. We could've been in their shoes. We were scared, but we can never really honestly say that we know what they went through."

___

Source: Kokomo Tribune, http://bit.ly/27QREha

___

Information from: Kokomo Tribune, http://www.ktonline.com