Margaret Hackett’s determination and resiliency in the face of several complex medical conditions is an inspiration to many. Together with her parents, Raynelle and Bill, she hopes to help others whose lives are affected by similar circumstances.
At 18 months, Margaret was diagnosed with a rare condition called craniometaphyseal dysplasia, which causes thickening of the bones in the skull. Despite this, she had an active childhood playing softball, skiing, and swimming. It wasn’t until Margaret entered junior high that she began experiencing severe headaches that led her and her family to seek help. After seeing a neurosurgeon, Margaret was diagnosed with hydrocephalus, a central nervous system (CNS) congenital anomaly that occurs when there is too much fluid in the brain’s ventricles, causing excess pressure in the brain. After several surgeries, doctors told the Hackett family that there was nothing more they could do.
Left without guidance, Raynelle and Bill anxiously searched for help. When they learned that a hydrocephalus convention was taking place at a local hotel, they headed there immediately, armed with copies of Margaret’s MRI scans and X-rays. “I’ll never forget that feeling of desperation, sitting in the hotel lobby and trying to find someone who could help us,” said Bill.
Shortly thereafter, Margaret conducted her own search online and came across a video of a doctor performing surgery on a young child with a similar condition. The doctor in the video was Dr. David Frim, MD, PhD, an internationally renowned clinical neurosurgeon and neurosciences researcher at the University of Chicago Medicine who specializes in caring for children and adults with CNS congenital anomalies. Although Dr. Frim had never seen a case quite like Margaret’s, he was willing to help.
“Dr. Frim likes a challenge,” said Margaret. “He doesn’t just make decisions based on what’s in medical textbooks; he takes into account the needs of the patient and family.”
Soon after finding Dr. Frim, the bone growth at the base of Margaret’s skull became increasingly aggressive, cutting off the flow of oxygen and blood to her brain and leading to the diagnosis of another condition, Chiari malformation. Dr. Frim and his team performed surgeries every three to six months to remove the excess bone. To provide additional room for Margaret’s brain, Dr. Frim even performed a radical procedure—removing the back half of her skull, cutting it into large pieces, reconnecting the pieces with mesh and wire, and then repositioning it back in place. During Margaret’s junior year of high school, she developed another condition, syringomyelia, where fluid-filled cysts develop along the spinal cord. Dr. Frim and his team placed small drainage tubes, called shunts, in Margaret’s spinal cord to release the fluid.
“Dr. Frim always listened to our concerns,” said Bill. “The connection he has with Margaret is incredible. His advocacy for her has built a deep sense of trust.”
Despite the challenges they’ve faced, the Hackett family is grateful. The neurosurgery program at UChicago Medicine is one of the few in the country dedicated to providing comprehensive care for both children and adults with CNS congenital anomalies. After all they’ve been through, the Hacketts want to share their knowledge and experiences to help others. “Over the years, we have made annual donations to support Dr. Frim’s work, but eventually we decided we needed to do more,” said Raynelle.
This decision resulted in a $2.5 million gift to establish the Margaret Hackett Family Program in CNS Congenital Anomalies at the University of Chicago Medicine. The program seeks to create a centralized source of information on congenital anomalies, so patients and families can find resources to help them better understand their diagnoses and options. In addition, the program seeks to establish a network of medical professionals with expertise in treating patients with such anomalies, and drive research focused on advancing understanding of these conditions and developing improved treatments.
“The program will help propel our research efforts, including determining which treatment approaches work best,” said Dr. Frim. “Every step forward allows us to help more patients and families here in Chicago and beyond.”
“In business, I’ve always said you should strive to make a difference, celebrate your successes, and learn from the challenges you face,” said Bill. “We’ve learned a lot from our experiences, so we know we can make a positive difference for others who face similar journeys.”