By UNIVERSITY OF IOWA STEAD FAMILY CHILDREN’S HOSPITAL
IOWA CITY, Iowa — When Kristina Turnis went in for a routine 30-week ultrasound with her local doctor in Sept. 2004, she and her husband, Ron, received some unexpected news.
Baby Christopher (Dubuque, Iowa) was diagnosed with posterior urethral valves — an abnormality in the urethra that prevents urine from properly leaving the body. Kristina was referred to University of Iowa Stead Family Children’s Hospital for more specialized care for her unborn son.
“His bladder was not emptying, and it did severe damage to his kidney, bladder, and ureters. His lungs also never developed past about 20 weeks gestation,” says Kristina. “They didn’t expect him to live more than an hour or two after birth. And if he did, he would have severe health problems.”
Christopher was born at UI Stead Family Children’s Hospital at 34 weeks gestation and underwent a procedure at two weeks old to repair his urologic issues.
At 3 years old, Christopher began experiencing frequent nausea, vomiting, and diarrhea. He was diagnosed with eosinophilic esophagitis, a rare digestive system disorder that includes swallowing difficulty, vomiting, and heartburn. Eosinophili, a type of white blood cell, build up in the esophagus lining as a reaction to foods or allergens.
“When he eats (most) foods, his body will attack it like a poison,” explains Kristina.
Doctors performed esophagus biopsy to determine the severity of Christopher’s condition.
“Anything over 15 eosinophils in your esophagus is considered eosinophilic esophagitis,” says Kristina. “He had over 350 eosinophils. At that time, his was the worst case they had diagnosed here.”
Christopher was put on an elimination diet and a gastronomy tube was placed so he could receive nutrients from a special formula. He still relies on a specialized formula through the G-tube today, and the only foods he’s able to eat are rice, potatoes, eggs, strawberries, blueberries, and beef. “Those few ingredients are considered social foods for him, so he has something to sit down and eat with, when everyone else around him is eating.”
In spring 2010, Christopher’s health began to decline again.
“Because of his birth defect that did severe damage to both of his kidneys, we knew somewhere down the line he would need a kidney transplant,” says Kristina.
Christopher was placed on the transplant list, and in Oct. 2010, Kristina received the call that a donor kidney was ready.
“It was exactly a week later from his sixth birthday, where he blew out his candles and said, ‘I wish for a new kidney,'” remembers Kristina.
Christopher was nervous, but felt he could rely on his care team.
“It was certainly scary, but one doctor helped me through it. We sat on the bed for an hour or so, and he’s telling me, ‘I’m not going to put this mask (for anesthesia) on you unless you’re comfortable,'” Christopher said. “That’s the great relationships and bond (I have) with the staff here.”
Christopher has also bonded with many fellow patients over the years, including a close friend who had cancer.
“She was my dearest friend. She passed away and it was the hardest thing I’ve ever had to go through,” says Christopher. “After she passed away, the child life specialists talked about how to cope with loss. They gave me this (stuffed) bear to think of her.”
Since birth, Christopher has undergone more than 46 surgeries and has spent more than 1,000 nights in the hospital. He sees specialists in eight different pediatric departments to address his needs.
Christopher, a member of the UI Stead Family Children’s Hospital Youth Advisory Council, and his family are appreciative of the specialists and staff who have cared for him over the years.
“Thank you for saving our son’s life. I can guarantee he wouldn’t be here without the care he has gotten here,” says Kristina. “Thank you for supporting us on our worst days, for thinking outside the box, and helping us focus on the quality of Christopher’s life.”
Christopher wants to be a kidney doctor when he grows up. “Part of that is because of the people he has been involved with here. He wants to help kids like him.”