Seeking answers
Kinzie’s doctor in North Dakota quickly referred her to Dr. Joe Lillegard, the head of open fetal surgery at the Midwest Fetal Care Center; and Dr. Saul Snowise, the medical director of the Midwest Fetal Care Center (MWFCC), a collaboration between Allina Health and Children’s Minnesota. The MWFCC is one of only a few advanced fetal centers in the U.S., and the largest multidisciplinary center in the Midwest focused on fetal care from diagnosis to intervention. Two weeks after their ultrasound in Bismarck, the couple made their first 400-plus-mile trek to the Twin Cities to meet with Dr. Lillegard, Dr. Snowise, and the rest of the multidisciplinary team.
During an ultrasound evaluation at the MWFCC, Dr. Snowise confirmed the diagnosis in Kinzie’s unborn baby, Stella, as a severe form of spina bifida called myelomeningocele. This meant Stella, if untreated, would be born with a gap in the bones of her spine, and a tiny sac containing nerves and spinal fluid would stick out of her back.
The specialist also discovered concerns with her hips, bladder and that she had clubbed feet – a birth defect that causes one or both of a baby’s feet to turn inward and downward. Dr. Snowise also diagnosed Stella with a buildup of spinal fluid in the hollow places of her brain called hydrocephalus. Stella’s family worked closely with specialists at Children’s Minnesota’s Neurosurgery program to monitor this diagnosis before she was born and throughout her infancy.