Patient Stories

From the minute he arrived, he was so impressed with Iowa City and how they handled the situation and continued to keep us updated with Charlotte’s progress.

I want to thank everyone who was a part of our care. Our daughter wouldn't be here without this hospital. From the nursing staff that comforted us in our moment of crisis to her doctors who saved her life and didn't give up on her, everyone made sure we were okay and explained everything that was happening.

“I told Dr. Willey I had a goal to get back to dance, do track, and play softball. He was great to me. He told me if I followed his orders, I would get back and do those.”

"Our youngest son, Mitchell, was diagnosed with pectus carinatum in February 2015. No doctors in Cedar Rapids treated this condition and we had to take him to University of Iowa Stead Family Children’s Hospital for specialty care."

Gwen had been sick and weak for several weeks and had developed a rash in May 2017. She had seen several doctors but did not get a diagnosis until her dermatologist took a biopsy of the rash. Gwen was found to have juvenile dermatomyositis, a rare autoimmune disease that affects three in every 1 million children each year. In juvenile dermatomyositis, the immune system attacks blood vessels throughout the body, causing muscle inflammation. This can cause exhaustion from everyday activities like walking up stairs or lifting a backpack.

In June 2017, Harper was diagnosed with embryonal rhabdomyosarcoma, a soft-tissue cancer, at University of Iowa Stead Family Children’s Hospital after her parents noticed a rapidly growing lump on her right cheek. The lump was a 6-centimeter tumor that had wrapped around crucial facial nerves and her jawbone.

Quinn was born with a genetic disease so rare that it doesn’t have a name. A gene mutation, known as SPATA5, has resulted in various medical conditions, including epilepsy, blindness, hearing loss, dystonia, and opisthotonos, a condition which causes severe and rigid muscle spasms that result in backward arching of her head, neck, and spine. When strong medications, up to 15 at a time, began negatively impacting her organs, pediatric neurosurgeons implanted a baclofen pump directly into the ventricles of her brain to more directly deliver her medication. She is now able to lie down comfortably and stand, and she is learning to take steps where before she would have been arching in pain.

After noticing that she crawled, rather than walked, up the stairs at age 3, Kiersten was referred to University of Iowa Stead Family Children’s Hospital. A pediatric neuromuscular expert diagnosed her with limb-girdle muscular dystrophy, a form of muscular dystrophy that weakens the muscles in the arms and legs.

In February 2014, Ean fell asleep and began vomiting. Unresponsive and not breathing, his parents called 911, and Ean was rushed to the emergency room by ambulance. After testing, pediatric neurologists at University of Iowa Stead Family Children’s Hospital determined he was having seizures caused by epilepsy.

Christopher was born at University of Iowa Stead Family Children’s Hospital at 34 weeks gestation with several organs that were severely damaged. The first of many surgeries took place when he was just 2 weeks old. Since birth, Christopher has undergone more than 40 surgeries and has spent more than 1,000 nights in the hospital.