Grace is "In it to Win it"

Watching a peacefully sleeping child is one of a parent’s greatest joys. For Susan and Sean, that joy turned to shock when just minutes after checking on their two children, Grace and Sean Jr., Susan heard a moan from their bedroom. Looking in again, she saw 8-year-old Grace lying in bed in a twisted position with her eyes staring off into space. Grace had suffered a stroke​ in her brain — a life-threatening condition that required emergency care from a team of Children’s specialists.
The family immediately called 911, and within minutes a Chicago Fire Department fire truck with paramedics on board arrived, followed shortly by a fire department ambulance. Paramedics started her on oxygen and radioed ahead to alert Children’s Emergency Department team that they were on the way. Time was of the essence, and when they arrived 20 minutes later, a team of doctors and nurses was waiting for them.
“I watched more than a dozen people working on my daughter at the same time,” says Susan. “It was like something you’d see on a TV show.”
A CT scan showed that an aneurysm, a weak, bulging spot on the wall of one of the arteries in Grace’s brain, had burst, resulting in bleeding and causing a hemorrhagic stroke. This type of stroke is particularly dangerous, because it can easily cause an increase in pressure inside the head and, if not treated immediately, can result in permanent brain damage. The scans also indicated a mass in Grace’s brain, but because of the bleeding, its nature could not be determined, and further tests would be needed after the blood completely cleared.
After stabilizing the pressure in her brain and relieving some of the bleeding, neurointerventional radiologist Ali Shaibani, MD, performed a minimally invasive embolization procedure, in which a tiny catheter was maneuvered into the aneurysm and a tiny coil was pushed through it, causing the aneurysm to clot and stop bleeding. In case the procedure was unsuccessful, a neurosurgery team was standing by to remove the aneurysm surgically. Fortunately, the procedure was successful. Grace then spent two and a half weeks in the hospital recovering.
Grace was admitted to the Rehabilitation Institute of Chicago for the intensive physical therapy necessary to help her regain the movement she had lost on the left side of her body. The family was told Grace would probably be there for six weeks, but thanks to her determination and hard work, she was discharged after only two weeks.
Grace went home and continued to work on regaining strength in her left side. A few months later, a follow-up MRI scan indicated she still had a mass in her brain a tumor that would need to be removed. After a four-hour surgery performed by Tadanori Tomita, MD, head of the Division of Neurosurgery, the benign tumor was successfully removed.
Today, Grace, now 9, is a fourth-grader who attends school three days a week and is in rehab at the rehabilitation center two days week. She wears a brace on her left leg and continues to work on increasing her muscle movement. “Grace has a motto: ‘In it to win it,’” says Susan. “She wants to win her full mobility back and works very hard at it.”
The family is grateful for the expertise of Children’s emergency medicine, critical care, medical imaging, neurosurgery and physical therapy teams. Susan also praises the family-centered care provided by Family Services, from the comfort provided by chaplain Jim Manzardo, to the compassion of the social workers, who explained to Sean Jr. about all the machines in her room, and told him that they were there to help Grace, not hurt her.
“What they do for kids at Children’s is just phenomenal,” says Susan. “I don’t think people realize how important it is until they need it. Who knows what would have happened if we had gone to another hospital that doesn’t specialize in treating kids. By bringing her here that night, her life was saved.”
Story originally appeared in the November 2009 issue of Heroes Update.