Profiles in Giving: University of Iowa Hospitals & Clinics

The Klein Family
Reston, Virginia

University of Iowa Hospitals and Clinics contributor Robert Klein and his family were visiting his parents six years ago when something odd piqued his curiosity.

"We noticed that my oldest son's (James) jaw-line was sagging," says Klein, who lives with his wife, Suzanne, and other sons, Matt and Scott, in Reston, Virginia. "We thought maybe he had swollen lymph nodes so we took him to a doctor."

A CT scan performed by a local otolaryngologist provided a surprise diagnosis: lymphatic malformation or lymphangioma. Lymphatic malformations occur when the lymphatic system develops abnormally in children. These malformations can range from mild to severe and most commonly appear in the head and neck. The lesions might enlarge with a cold or illness, or fluctuate in size, but typically do not go away on their own.

While surgery has typically been the treatment of choice, the rate of recurrence for lymphangioma lesions is often as high as 50 percent. That's why the Kleins were intrigued when their otolaryngologist mentioned a new study being conducted at Children's Hospital of Iowa, a part of University of Iowa Hospitals and Clinics.

Klein had never been to Iowa and knew and had no idea the University's Department of Otolaryngology--Head and Neck Surgery was so highly regarded. However, the Virginia physician's comments led the Kleins to make a series of calls to Diane Burke, R.N., the study's nurse coordinator, and to otolaryngologist Richard J. H. Smith, M.D., who initiated the study.

Johns Hopkins University was one of 12 U.S. sites for the study, so the Kleins went there for the first two treatments called for in the study's protocol. The third and final treatment would have been given there as well, but the doctor had left for a position at another institution.

At that point the Kleins decided to seek the third injection from the experts they had gotten to know and love on the telephone. So in November 2001, they packed up the car and drove from Virginia to Iowa City and the University of Iowa Hospitals and Clinics.

"It was the perfect opportunity to get the best treatment for James and finally meet Diane Burke and Dr. Smith," Klein says. "When we arrived at the clinic we could hear their voices in another room and we knew who it was."

Smith says the outlook for James is excellent. "He had what we call complete resolution of his cystic hygroma. Patients have a two-year follow-up period once they are done with treatment so we will be monitoring any recurrence."

Robert Klein was so pleased and impressed with the service and expertise his family received at UI Hospitals and Clinics that he wrote two letters: one to his congressman encouraging federal support for the OK-432 trial, and the other encouraging relatives to donate to UI's treatment and research efforts in the area of lymphangioma.

"We asked our family to help, and they made some nice gifts," Klein says. "We all consider it money well spent." (Learn more about or contribute to the Lymphangioma Research Fund.)

Editor's note: A version of this article originally appeared in Pacemaker, a publication of University of Iowa Healthcare.

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