Patient Stories

"We know we are very fortunate and are thankful for the care he received. Everyone that cared for our son played such a crucial part in his survival and experience." — Hilary and Brannon Spengler

Dr. Butali shares the story of his daughter, Amirah, and her struggles with sickle cell disease before getting a life-changing bone marrow transplant from her 5-year-old brother in 2016.

Jaelyn first came to University of Iowa Stead Family Children’s Hospital in December 2010, when she was 10 months old. She wasn’t gaining weight, and her local doctor referred her to UI Stead Family Children’s Hospital for “failure to thrive.” She weighed just 10 pounds.

A persistent fever, mysterious bruising, and a stubborn nosebleed gave 3-year-old Flynn’s local pediatrician cause for concern. When results from blood tests came back, he had an ambulance waiting to transfer Flynn and his mom to University of Iowa Stead Family Children’s Hospital. Once Flynn’s father arrived, they were told Flynn had leukemia.

Sam was born in Uganda with hydrocephalus, spina bifida—a birth defect in which bones don’t properly form around the spinal cord—and malformations in his bowel and bladder. He lived in an orphanage where specialized medical care wasn’t readily available, but he was adopted in 2015.

Drew was born with severe congenital heart disease that went undetected until he became very sick at 8 days old. Upon examination, his local pediatrician discovered his heart was racing and lungs were full of fluid. He was taken by ambulance to a Waterloo hospital, where tests the next day showed the fluid in his lungs was due to Drew being in heart failure.

Camdyn was a seemingly healthy newborn when she stopped breathing in her mother’s arms at 21 days old. She was taken by ambulance to a local hospital, where medical staff performed CPR for almost an hour. When a faint pulse was found, she was flown by helicopter to University of Iowa Stead Family Children’s Hospital. Doctors found no reason for her to have stopped breathing, and after a month of tests, Camdyn went home with a heart monitor.

When Maddox was 5 years old, his parents noticed spots that looked like birthmarks but weren’t present before. They asked their family physician about the spots—called café au lait spots—and were referred to a genetics expert at University of Iowa Stead Family Children’s Hospital. They learned...

When Hayden was 19 months old, her parents noticed she was having balance issues. A CT scan at a local hospital showed she had fluid on her brain. She and her family were transferred to University of Iowa Stead Family Children’s Hospital, where doctors discovered a mass on Hayden’s brain stem. The mass was removed during an eight-hour surgery, but Hayden still wasn’t out of the woods.

Leah was 7 years old and living with her family in Knoxville, Iowa, when she had her first life-threatening seizure. Her parents took her to a local emergency room, and she was flown by helicopter to a Des Moines hospital. Two months later, she had a similar seizure and was again taken to Des Moines. By summer of that year, she was experiencing headaches and intestinal issues.