One Patient’s Story: Critical Care

Anberlin Gripp loves to read. The 12-year-old taught herself at a young age. “When she was around 3, she pointed to a book and read the word ‘dig,’” her mother, Jenna Gripp, recalls. “From there, her love of books and reading has only continued to grow.” The world of books offers a welcome escape for Anberlin, who has been a patient at SSM Health Cardinal Glennon Children’s Hospital since she was a toddler.

Anberlin originally visited SSM Health Cardinal Glennon for its neurofibromatosis clinic. The genetic disorder causes non-cancerous growths to develop on any nerve ending throughout the body. It can cause vision or hearing impairments, bone defects, learning disabilities, seizures and benign skin tumors. “My son and I also have neurofibromatosis,” Gripp notes. “The hospital has a multidisciplinary team to help coordinate care. We work with specialists in otolaryngology, ophthalmology, genetics, audiology, otolaryngology, neurology and more.” It was the hospital’s orthopedics team that discovered Anberlin had scoliosis when she was 4 years old.

Gripp discussed treatment options with orthopedic surgeon Dr. Howard Place. Somewhere down the line, Anberlin would need a spinal fusion, but the decision was made to wait until she was older. Her team tried full torso casts, which were minimally effective, before switching to braces when she was around 7. Anberlin continued regular appointments with her specialists. When she was 9, one of her primary care providers noted she was very underweight and referred the family to the hospital’s adolescent team. “We started working with Dr. Elizabeth Noonan, who began treating her for an avoidant/restrictive food intake disorder,” Gripp says.

Anberlin spent 27 days in the hospital. She went through six nasogastric tubes before an eventual gastrostomy button placement for overnight supplemental feeding. It was critical that she put on weight, especially since in 2023, she was deemed ready for corrective spinal surgery. When looking for a cause for Anberlin’s inability to gain weight, her team discovered a type of tumor known as a plexiform neurofibroma encasing her celiac artery. “The tumor was deemed inoperable because of its location,” Gripp notes. “Anberlin was placed on medications to slow its growth, which have been successful.”

In June of 2023, Anberlin had a halo traction placement followed by a spinal fusion in July. The procedure helped her recover some mobility. Unfortunately, it was discovered that her body was rejecting one of the screws. This summer, she had the hardware removed and is scheduled for another spinal fusion in November. “We’ve had a long journey with SSM Health Cardinal Glennon, but the team has been phenomenal” Gripp says. “The doctors and staff take the time to get to know Anberlin as a person, learning about her schoolwork and hobbies. She recently had a Make-A-Wish trip, and everyone has been asking to see photos and if she had a good time.”

Care for families like the Gripps is made possible thanks in part to community support and innovative fundraisers. One of the hospital’s major initiatives is the Glennon Card, a discount shopping program that allows St. Louisans to directly support its young patients. Each fall, the purchase of a $60 card unlocks a 20% discount at hundreds of retailers, eateries and attractions, and 100% of card sales benefit SSM Health Cardinal Glennon. The program is organized by the hospital’s foundation and the Glennon Guild, a women’s auxiliary that supports the hospital.

This year’s shopping period is Oct. 18 to 27, and more than 340 businesses are participating. Among them is Betty’s Books, a Webster Groves bookstore specializing in trade comics, graphic novels, manga and children’s literature. This is the store’s first year in the program. Owner Betty Bayer was especially excited to get involved after learning about Anberlin’s love of reading. “It’s great to see a young person so excited about books—you don’t want to disappoint someone like that,” she says. “We’re proud to support such a great program that helps sick kids.”

Like with many local shops and restaurants, the discount offered through Glennon Card is a rare opportunity for customers of Betty’s Books. Bayer is excited to give back to the community that supports her business. “Being an independent bookstore is a struggle in the world of Amazon and other online shopping,” she notes. “We exist because of the people who come in and shop with us. The Glennon Card is a great incentive to visit some of the special small businesses that call St. Louis home.”

Gripp is excited to visit Betty’s Books for holiday shopping. “We’re looking to fill up a new bookcase for Anberlin, and Betty’s Books is right up her alley,” she says. “SSM Health Cardinal Glennon saves lives—that’s what they do. It has meant so much to my family and others in the community. By purchasing a Glennon Card, you’re giving back to St. Louis while helping provide critical care for children.

Purchase a Glennon Card for 10 days of savings at local retailers, eateries and attractions Oct. 18 to 27 while supporting SSM Health Cardinal Glennon Children’s Hospital. Pictured on the cover: Glennon kid Anberlin at Betty’s Books in Webster Groves. For more information, visit glennoncard.org.

Cover design by Julie Streiler
Cover photo by Colin Miller of Strauss Peyton Photography

Pictured at top: Glennon kid Anberlin
Photo courtesy of SSM Health Cardinal Glennon Children’s Hospital