When Gabriel Kampka was born at Meriter Hospital in July, his heart was racing, his belly was bloated and his blood pressure was dangerously low.
Just 12 hours after birth, doctors rushed him to a new kind of procedure room at UW Health’s American Family Children’s Hospital, where they discovered he had an abnormal coronary artery and a twisted bowel.
They also learned he has cystic fibrosis, a genetic disorder in which mucus builds up in the lungs and digestive system, frequently causing deadly infections.
Gabriel spent nearly three months at the hospital before going home, where his parents are grateful he’s alive to greet the new year.
“It really puts a new perspective on life,” said Melissa Kampka, 36, Gabriel’s mother, who lives between Portage and Wyocena. “We’re celebrating today and taking advantage of each day.”
Gabriel was among the first patients treated in the children’s hospital’s specialized neonatal intensive care unit (NICU), which opened in May.
He was also among the first to use the hospital’s hybrid catheterization lab, which allows surgeries and imaging procedures to be done in the same place. The lab opened last January.
The 14-bed NICU and the hybrid lab are part of a $45 million expansion completed last year at the hospital, which opened next to University Hospital in 2007.
The specialized NICU, for babies with more significant surgical needs than those in the NICUs at Meriter and St. Mary’s Hospital, is able to treat children in Madison who previously had to be sent to Milwaukee or elsewhere.
Melissa and Michael Kampka’s two other children, Sydney, 6, and Sam, 4, are healthy.
Melissa’s pregnancy with Gabriel went smoothly until the end, when his movement slowed. “Something wasn’t quite right,” Melissa said.
As doctors planned to induce delivery, Melissa went into labor and gave birth July 24.
Minutes later, it was clear Gabriel was in trouble. Tests suggested a twisted bowel, which can be life-threatening. It wasn’t clear why his heart was under considerable distress.
Doctors took him to the hybrid lab, where they could do two types of procedures without making Gabriel undergo anesthesia twice.
Dr. Peter Nichol, a pediatric surgeon, removed the twisted portion of bowel. It was swollen from thick, hard stool, a condition somewhat common among newborns with cystic fibrosis, Nichol said.
“It looked like a snake that just swallowed a lion,” he said.
Dr. Luke Lamers did a catheterization to evaluate the heart. Gabriel had congenital atresia of the left main coronary artery, a rare condition that sometimes requires immediate repair.
In Gabriel’s case, however, the coronary artery from the right side of his heart was compensating for his blocked left artery to provide adequate blood flow, said Dr. J. Carter Ralphe, a pediatric cardiologist.
Most of the cardiac distress was likely related to the twisted bowel, Ralphe said.
The blocked artery is “something we’re going to keep a close eye on to determine if and when a repair will be needed,” Ralphe said.
Weeks after the emergency surgery, Nichol reconnected the remaining portions of bowel. Gabriel went home in October with a feeding tube, but he soon started eating well on his own.
Good nutrition is key for cystic fibrosis patients because their digestive systems don’t properly absorb some foods.
Gabriel gets high-calorie feedings at least seven times a day. Twice a day, his parents give him nebulizer treatments to open his airways and clap on his chest with cupped hands to loosen mucus.
Decades ago, most children with cystic fibrosis died before they were 10. Today, thanks to new drugs and other improvements, most are expected to live into their early 40s, according to the Cystic Fibrosis Foundation. Some live considerably longer.
Melissa and Michael said they realize Gabriel has a serious condition that will bring challenges. But they’re trying not to focus too much on that.
“We’re just taking one day at a time,” Melissa said.