Ankeny, IA

Faith LeMaster has a smile that lights up a room. Despite the many health challenges she has endured throughout her life, this 10-year-old has never let tough times dim that smile.

Early in Julie LaRue’s pregnancy, local doctors diagnosed baby Faith with bilateral clubfoot and arthrogryposis, a congenital disorder characterized by stiff and immobile joints.

Though a cesarean section was planned at University of Iowa Hospitals & Clinics, Faith was born at her hometown hospital by emergency C-section almost eight weeks early. A tear in Julie’s artery caused both mother and daughter to experience heavy bleeding. Faith required resuscitation twice.

Weighing only 3 pounds, 13 ounces, Faith was transferred to the UI Stead Family Children’s Hospital Neonatal Intensive Care Unit (NICU) when she was 5 days old.

“Our hometown hospital decided that with the clubfoot, arthrogryposis, and bleeding on the brain, we needed to be transferred to UI Stead Family Children’s Hospital for all the different specialties that Faith was going to need,” says Julie.

Faith stayed in the NICU for the first three months of her life. Janine Petitgout, ARNP, with the Continuity of Care program helped coordinate all of the resources Julie and Faith would need once they left the hospital, including insurance, wheelchair services, and home care.

Faith’s arthrogryposis limits the range of motion in her shoulders, hips, elbows, and wrists, which has led to decreased muscle mass. Over the years, Faith also developed scoliosis—an abnormal curvature of the spine.

The more severe the scoliosis became, the more it began to affect Faith’s lungs, heart, digestion, bowels, and stomach. After meeting with pediatric orthopedic surgeon Stuart Weinstein, MD, it was decided that a spinal fusion surgery in July 2014 would be Faith’s best option to correct the scoliosis.

“Dr. Weinstein’s team is amazing,” says Faith’s stepfather, Ryan LaRue. “They have the procedure down. They’re so calm and confident.”

Julie is excited to see the full impact the surgery will have on her daughter’s future.

“I know the long-term benefit and her quality of life are the most important parts,” says Julie. “Her whole world is going to change.”

While recovering from surgery, Faith is getting back to the activities she loves most—being outside, going to school, and reading with her caring stepbrother, Lochlan.

Faith still sees UI Stead Family Children’s Hospital specialists in orthopedics, nephrology, ophthalmology, and dentistry, and Julie and Ryan wouldn’t want to bring their daughter anywhere else.

“UI Stead Family Children’s Hospital has meant a great deal to our family,” says Julie. “We know that whatever the situation is, they can handle it.”

Julie and Ryan are grateful to the UI Stead Family Children’s Hospital doctors, nurses, and staff who have cared for Faith.

“Something I love about UI Stead Family Children’s Hospital is you get that skill that you will never get anywhere else, and you get the bedside manner to go with it,” says Julie. “Everyone on the staff shakes my hand and holds it a little longer. They go above and beyond.”

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