Twenty-four years ago, Barbara Hunter felt that God picked the right doctors, the right nurses and the right hospital to treat her then 3 ½ year-old daughter, Brianna.
That’s when Akron Children’s Hospital diagnosed Brianna with a rare condition called retractile sclerosing mesenteritis. It damaged 1 foot of her bowel, leading to toxic shock, coma and near death.
Now approaching her 28th birthday, Brianna is healthy and happily engaged to Matt, 31.
She’s glad she doesn’t remember the acute crisis period of her condition, but she has fond memories of her 7-year follow-up with Akron Children’s doctors, nurses and therapists in what she remembers as her “children’s family.”
As a birthday present for Brianna, Matt contacted Akron Children’s to ask that her story be updated for the hospital’s 125th anniversary. (Her story was initially told in 1993 in a hospital publication called Children’s Progress.)
Topping the list of updates is her current training to become a child life specialist.
“I never knew what I wanted to do but due to my connections with Akron Children’s I learned about this fairly new field,” Brianna said. “ I wanted to give another child what I received from the caring nurses, doctors and social workers at Akron Children’s.”
Harrowing medical journey
Before being diagnosed with retractile sclerosing mesenteritis, Brianna was a healthy preschooler, living in Canton, Ohio, with single mom, Barbara, and her 3 older brothers.
Then, in April 1991, everything changed. Brianna woke up with a stomachache, followed by vomiting, fever and restlessness. Barbara rushed her to Aultman Hospital ER, where she worked as a maternity nurse.
Brianna’s condition rapidly deteriorated. Her pulse was weak and rapid, her lips were blue, and they were unable to get a blood pressure reading.
“Brianna was dying in front of our eyes,” Barbara said.
Brianna was life-flighted to Akron Children’s Hospital, where Dr. Robert Klein, the now retired chair of pediatric surgery, confirmed through an X-ray that Brianna had a hole somewhere in her intestinal tract.
That same night, in a 3-hour surgery, Dr. Klein removed a 1-foot area of the small intestinal covering (mesentery), which was free-floating and gangrenous. When the mesentery pulled away, it dumped intestinal contents into Brianna’s abdomen, causing septic shock and peritonitis, a potentially fatal inflammation of the abdominal lining.
Even after surgery. Brianna’s diagnosis was still a mystery. In search of answers, Dr. Klein contacted an international rare disease registry, which had identified only 5 cases of retractile sclerosing mesenteritis.
Today the condition is thought to be a spectrum of conditions involving the mesentery, yet only 250 cases have been reported to date.
For weeks after surgery, Brianna’s status was touch-and-go. Her blood pressure dropped critically low, she had 13 IV lines and a breathing tube, and she had lung damage caused by aspiration of stomach contents.
“They told me she had a 10 percent chance of survival,” Barbara said.
By week 3, Brianna was still in a coma and had developed blood clots, which lead to a third surgery.
“She didn’t look much like a little girl, except that a wonderful nurse, Nelda Wilson, had put her hair in a ponytail,” said Barbara.
Another blood clot occurred in week 4, followed by a fourth surgery. By this time, Brianna had been in a medically-induced coma for 1 month.
Finally, Brianna started to show signs of improvement. Doctors cut back on her medication and she slowly began to regain consciousness.
By week 5, she was in a regular patient room and nurses worked with her to eat small amounts of soft food.
At first, Brianna had difficulty communicating with her mom but slowly she starting talking and received physical therapy to relearn to stand and walk.
She finally came home on Memorial Day Weekend in 1991.
“I was a regular at Akron Children’s for 7 years after my recovery,” Brianna said. “The things I remember most are the hugs I got from everyone – Dr. Klein, the nurses, therapists – they were all wonderful!”
Brianna looks back on the experience with gratitude.
“I feel for what my mother had to go through,” she said. “She has always been there for me.”
Shortly after Brianna moved to Rochester, NY, in 2013, she had a bowel obstruction due to what a GI specialist in Rochester called a “flipped” area of intestine. She avoided surgery because the bowel area “flipped” back.
Besides that incident, she has regular visits with her physician and remains in excellent health.
Brianna points to her experience at Akron Children’s as the motivation for her passion to help others.
Matt’s impetus for requesting Brianna’s story be updated came when he saw her enthusiasm for sharing her story with her university class.
As for Matt’s gift, Brianna calls it the best birthday present ever.
“Special caregivers don’t always realize their impact,” Brianna said. “They made a big difference in my life, which I can’t wait to pass on.”
As part of our year-long anniversary celebration, we’re telling the story of Akron Children’s through the eyes of past and present employees, doctors, donors, volunteers and patient families. We encourage you to share your own memories and stories about us.