The ultrasound performed shortly before Katelyn Larson was born gave no sign that she would soon need another child's heart to survive.
Katelyn's first three months of life seemed delightfully normal, giving her parents no hint of the terrible days to come.
During the Larsons' ordeal, Katelyn's heart swelled to about twice the normal size for a baby. Its walls became thin and the organ couldn't squeeze and pump blood effectively through her body. Her heart eventually was connected by tubes to a pumping device beside her.
Last month Katelyn became the third heart recipient in the transplant program that Children's Hospital & Medical Center started this year. All three children are doing well, hospital officials say.
Children's said when it started the program that Nebraska and the region needed a hospital to perform pediatric heart transplants so families wouldn't have to travel hundreds of miles for the service.
Katelyn's parents, Wendy and Chad Larson, say they most likely would have taken their baby to St. Louis, about 500 miles from their hometown of Odebolt, Iowa, if Children's, some 110 miles away, hadn't started a heart transplant program. St. Louis Children's Hospital this year has done four heart transplants on children under one year of age, according to a national database. The report said 65 such heart transplants have been performed across the nation.
As their baby squawked quietly in a nearby stroller, Wendy and Chad Larson raved about the professionalism and kindness they received from surgeons, physicians, nurses and staffers at Children's.
“Everyone here is just so good,” the father said in an interview this week with The World-Herald.
They liked how frank the medical experts were with them and that doctors would talk to each other right in front of the Larsons, sometimes politely disagreeing with each other.
Wendy Larson noticed in late July that Katelyn perspired when she nursed and that she had a slight cough. The Larsons have two boys, 9-year-old Nick and 7-year-old Jake, and knew that minor illnesses come and go.
But their lives flipped over on Aug. 3. Katelyn ate little that day and fussed. She laughed as the boys pulled her around the kitchen in a homemade cart, but by evening she refused to eat. She grew lethargic, dry heaved and her lips turned blue.
Her parents left the boys with friends and rushed Katelyn to the hospital in Ida Grove, Iowa. An X-ray indicated that her heart was enlarged and doctors contacted Children's, which sent an ambulance. Early the next morning, Children's took more images of the heart and conducted tests. Katelyn's heart raced. She breathed heavily and her rib cage pumped.
Katelyn soon was in the pediatric intensive care unit, surrounded by doctors, heart specialists and nurses. They put intravenous lines in her.
“I didn't know what to think at that point,” Chad Larson said. “Couldn't believe what I was seeing.”
“There were, like, 17 people in the room,” the mother said. “It was like watching a movie you didn't belong in.” The parents wept.
The specialists put a breathing tube down her throat. Katelyn's blood pressure plummeted and Dr. James Hammel, the hospital's primary transplantation surgeon, performed CPR by wrapping his hands around her and pumping her chest with his thumbs. The heart began its laborious work again. That moment for Katelyn was “about as close to death as you can get,” Hammel said.
Doctors took the parents into a conference room. The word “transplant” came up.
It shocked them. Days before, Katelyn seemed well and beautiful. Now her heart was crashing and dying, evidently of a genetic condition that caused cardiomyopathy, or disease of the heart muscle.
Katelyn had some good days and some awful days at Children's, but the trend was downward. She was placed on the national heart transplant list on Aug. 13. Six days later, they connected her heart to a device called Rotaflow, which sat outside Katelyn's body. The clear, circular device pumps blood for heart-failure patients. Her mother said that each day it felt like they were walking through a minefield, waiting for something else to blow up.
The parents experienced an array of feelings — confusion, helplessness, fear, disbelief that this was happening.
“Didn't know what to think about anything,” said Chad Larson, 48, who has a small business that renovates houses.
They felt so sorry for their girl. She couldn't even cry because of the breathing tube down her throat. They saw her tears.
The parents, born-again Christians, grew resigned. They said they gave the situation to God.
“You realize that's all you have,” said the 43-year-old mother, who has an Internet business that helps people shop online. “That's all that carried us.”
The parents rarely could hold their baby because she had so many tubes and wires in her. They could kiss the top of her head, a portion of her neck, her legs and her toes. At one point, nurses carefully moved the tubes and lines to one side so Katelyn's mother could get in bed with her to snuggle.
The parents stayed at Rainbow House, the place at 78th and Harney Streets for families and patients in long-term care at the Omaha hospital. They spent days and nights with Katelyn at the hospital. They awaited an organ now but still hoped Katelyn's heart would heal miraculously. How, the mother asked, do you pray for a heart for your child?
The hospital called them early in the morning on Sept. 12. A heart had become available. It would arrive later that day.
The parents lay in bed and prayed aloud for Katelyn, her doctors and surgeons. They prayed for the family that had lost a child and had been willing to donate the heart. It was almost too much to think about.
“And then we were silent,” the father said.
That morning, before the transplant, they went to Katelyn, who would soon be prepped for surgery. Katelyn smiled at them, and they took that as a good sign.
Then they waited with about 10 relatives and friends. The heart arrived that afternoon and was good and healthy, a nice match for Katelyn, said Dr. Steven Kindel, the pediatric cardiologist who has been in charge of Katelyn's case.
Dr. James Hammel went to work. It is “very, very weird when I remove the baby's own heart and there's this gaping void in their chest,” Hammel said this week. That void “looks awfully big and awfully empty.”
The transplant surgery lasted about three hours. “It went very smoothly,” Hammel said.
The parents went in to see Katelyn. She woke up a bit, and they knew she was OK. The parents, exhausted, went into a hospital sleeping room and slept together on a single bed.
The first year after a transplant is the toughest and most fragile, Hammel and Kindel said. The heart will grow with her and conceivably could serve her well for 10, 20 or 30 years, and maybe more if anti-rejection meds continue to improve, Hammel said. She will have to take a lot of medication, and while her prognosis is good, Hammel said, managing her immune system will be a complicated challenge for the rest of her life.
“Surgically, our work is done,” Hammel said. “We're happy with all the hookups.”
She was out of the hospital and into Rainbow House with her parents a couple of weeks after the transplant.
“It's still very early,” Kindel said. But “her heart function looks perfect, she is gaining weight and she is cute and pink and happy most of the time,” Kindel said. She still has a feeding tube down her nose but otherwise is unhooked from lines and tubes.
Katelyn receives therapy at the hospital to improve her ability to eat, which was set back by having the breathing tube down her throat. She also is receiving therapy to strengthen her arms and legs, and to help her learn to roll over and get back to speed with babies her age, 5½ months.
The specialists will go through a vein in the neck or groin next week to get tiny pieces of the heart to make sure her system isn't rejecting it. If that goes well, the Larsons, including Katelyn, will go home to Odebolt.
They appear to have made it through the minefields. It wasn't the miracle cure they had wanted. But it was a miracle, they say, just the same.