“When we first were told that it was Peters Plus, I bolted to the Internet to find as much direction and information as I could,” Chris said. “There really wasn’t anything out there. That’s when I really started to worry.”

Peters Plus is an extremely rare genetic syndrome, with fewer than 50 cases reported worldwide. The hallmark of Peters Plus is vision problems, accompanied by shortened limbs and other anomalies that affect nearly every one of Faith’s body systems. Her medical team made arrangements to transfer Faith to Children’s Hospital of Wisconsin’s NICU, where a host of specialists began to work with her and her parents to sort out and treat literally dozens of medical problems.

“Hearing Faith’s diagnosis and having to transfer to a new hospital was horrible,” Karen said. “We had been at the first hospital more than a month, and we had built relationships and trust with the staff there. Now, we were going to a new place

with a very sick baby and people we didn’t know. It was very hard. We were lost, but our NICU nurse really helped pull it all together for us.

“We had to trust that the doctors were telling us what was best for Faith, but back then, I had no medical knowledge,” Karen continued. “Our nurse stepped up and took control for us. She was there for the care conferences, worked with the rotation of doctors and really got all the information pulled together so that we could understand it and begin to make decisions for Faith.”

Faith faced a myriad of problems: respiratory issues, immune system problems that resulted in infections, an ovarian cyst, urinary tract and kidney problems, feeding difficulties, a tethered spinal cord and partial hearing loss. Karen and Chris worked with what seemed to be an endless parade of specialists at Children’s Hospital: a neonatologist, pulmonologist, geneticist, orthopedic surgeon, general surgeon,

neurosurgeon, nephrologist, urologist, opthalmologist and gastroenterologist, just to name a few.

Faith’s first stay at Children’s Hospital lasted 10 weeks. During that time, she underwent surgical procedures to correct a duplicated ureter (the narrow tube that carries urine from the kidneys to the bladder), remove an ovarian cyst and place a feeding tube. She breathed with the assistance of a ventilator for a prolonged period of time.

Faith approached 4 months of age and although she remained very ill, Karen and Chris prepared to take her home, learning how to administer no less than seven different medications. Before Faith was discharged, the couple was introduced to W. Craig Leach, DO, a pediatrician with Children’s Medical Group, who became Faith’s primary care pediatrician. Leach offered the Madding family nearly 20 years of experience caring for children with complex health care needs.