Hope for patients with central nervous system disorders

Margaret Hackett and her parents, Bill and Raynelle, and her service dog, Feivel.
Margaret Hackett and her parents, Bill and Raynelle, and her service dog, Feivel.

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 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. Further, in Margaret’s case, the continuous bone growth reduced the space at the base of the skull, forcing brain tissue into the spinal canal.

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.”

Since her initial diagnosis of hydrocephalus, Margaret, now 33, has undergone 37 brain and spinal cord surgeries. Despite the challenges they’ve faced, the Hackett family is grateful.

“Notwithstanding Margaret’s range of challenging conditions, we have been blessed,” said Bill. “Margaret has received the world’s best care. The University of Chicago Medicine has been like a second family to us. We’ve gotten to know the nurses, interns, and residents, and they all know Margaret. It’s an amazing, warm community.”

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 recent $2.5 million gift to establish the Margaret Hackett Family Center 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 will 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.”

Importantly, the program also aims to build a community for patients and families to connect with one another.

“The whole reason behind this is to give people hope,” said Bill. “The pace of discovery in science and medicine is advancing at unprecedented rates. Thus, while there may not be answers today, there will be tomorrow. And, we are confident that Dr. Frim’s work will accelerate this discovery. While our gift lays the foundation for the program’s work, we are collaborating with Dr. Frim to secure additional contributions to further fund and optimize the program’s initiatives.”

After more than four decades in the beer business, Bill recently retired from his role as chairman of beer at Constellation Brands, one of the leading beer companies in the United States. He is now committed to dedicating far more time and energy to the Margaret Hackett Family Center Program at UChicago Medicine.

“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.”

Make your gift today at giving.uchicago.edu/cns-congenital-anomalies to support innovative research at the University of Chicago Medicine that will advance understanding of CNS congenital anomalies and contribute to the development of improved treatments. Your philanthropic support plays a critical role in enabling our surgeon-scientists to deliver new hope to patients and families.

Published May 2019

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