Brent Groza’s family has had plenty of experience with hospitals since the bright-eyed toddler was born 18 months ago. But it wasn’t until they accidentally ended up at the University of Minnesota in August that they finally felt they were where they needed to be.
Brent was born with immune dysregulation polyendocrinopathy enteropathy X-linked syndrome‚ or IPEX for short. Children with this syndrome—and there are only a few of them in the world—have a genetic alteration that causes their immune system to attack the body’s own tissues and organs. Untreated‚ their tiny bodies can basically self-destruct.
Brent’s parents‚ Melissa and Pete‚ first knew they had a special child when Brent went into a diabetic coma the day after he was born.Three months later‚ he started having trouble keeping food down.Then he developed eczema. Over Christmas 2006‚ Brent’s diabetes spun out of control‚ and his digestive system went on strike. The baby clung to the edge of life as doctors at the hospital near their suburban Chicago home scrambled to figure out what was happening.
Eventually‚ a gastroenterologist was called in. Amazingly‚ she had completed her residency training under an IPEX expert.The Grozas soon had a diagnosis—one that no parent would want to hear. Most kids with IPEX don’t live to see their second birthday.
“I thought‚ ‘My son can’t get married‚ he can’t learn to drive‚’” says Melissa. “It was as though your boat had capsized in the middle of a tunnel of terror.”
The one hope for Brent was a stem cell transplant‚ which provides healthy cells to fill in for the dysfunctional ones. Brent received a transplant in Chicago in March‚ but it didn’t take. At the end of their rope‚ the Grozas decided to move to Cincinnati‚ where their gastroenterologist had trained.
Again fate stepped in. Before they left for Ohio‚ the Grozas drove to Minnesota to visit Melissa’s parents. Soon after they arrived in the Twin Cities‚ Brent spiked a fever and was admitted to the University of Minnesota Children’s Hospital‚ Fairview.
“They never had a patient like Brent before‚” Melissa recalls. But that didn’t stop the doctors and nurses from giving him their best. Brent’s health-care team‚ led by transplant specialist K. Scott Baker, M.D., M.S., and pediatric hospitalist Abraham Jacob, M.D., was quick to admit what they didn’t know‚ respect what Melissa knew‚ and gather new knowledge.
Feeling a sense of comfort and control they had not felt since Brent was born‚ the Grozas decided to stay at the University for Brent’s care. On November 20‚ he received another stem cell transplant‚ this time at the University’s children’s hospital.
The cells are settling into Brent’s bones‚ where doctors hope they will provide the immune-system function his body needs. The Grozas are now preparing to move to Minnesota —a place Pete‚ a native of southern California‚ long ago told Melissa he would never live.
“The U must have done something incredible for that to happen‚” Melissa says.
What was it? “The overall experience—everybody rooting for Brent‚ taking time to be the shoulder to cry on‚” she says. “We’re now starting to make plans for the future‚ and we have that‚ thanks to the U.”