Anna Hergenrather is a curious 2-year-old who loves tasting new foods, watching Disney movies and being around people. Born with a gene mutation her doctors believe led to her long list of diagnoses, she is a constant source of joy for her family and everyone she meets.
Anna loves being outdoors, enjoying as many popsicles as her parents will allow and gleefully driving her adapted car. Despite her fondness for fun, she’s also endured a long list of surgeries, doctors’ appointments and specialist visits during her short two years.
Anna’s evolving diagnoses began with spina bifida and hydrocephalus in utero
Anna’s mom Shelby first learned that her daughter would likely have complex medical needs while undergoing a routine anatomy scan during pregnancy. The scan detected spina bifida (a neural tube birth defect) and moderate hydrocephalus (an abnormal buildup of fluid on the brain), the first two of many conditions believed to be tied to the mutation of her STAG2 gene. The mutation impacts the gene’s group of proteins that organizes DNA, controls the gene’s activity and guides cell growth.
When Anna was born on May 8, 2024, her diagnoses continued to evolve.
“One of Anna’s most impactful diagnoses is holoprosencephaly—a condition in which her brain didn’t fully divide into two hemispheres in utero,” explained Shelby. “She has the mildest form, referred to as middle inter-hemispheric variant (MIHV), where the front and back of her brain is divided into two hemispheres, but the middle is still fused.”
Coordinating complex care
In addition to spina bifida, hydrocephalus and holoprosencephaly, Anna has mild hearing loss, epilepsy, a neurogenic bladder, reactive hypoglycemia and relies on a GJ tube for her nutrition. With all these conditions, and the desire to get a complete medical picture, Anna sees providers in 17 different specialties here at CHoR, including neurosurgery, neurology, ENT, genetics, orthopaedics, urology and GI, not to mention physical and speech therapists.
Before moving to Richmond to be near CHoR, coordinating care for Anna was overwhelming.
“We were living in Northern Virginia for much of Anna’s first year of life and spent most of the time admitted across four different hospitals,” explained Shelby. “Once Anna became less emergent and most of our care transitioned to outpatient, I was putting in 20 hours of admin work a week solely coordinating her care.”
And that didn’t count the time spent at the appointments or the traveling to each one.
“I was playing doctor between doctors who would only look at Anna through the eyes of their own specialty and I was driving hours every day because appointments weren’t consolidated,” remembered Shelby. “We had multiple specialist appointments every day, every week.”
The family moved to Richmond just to be closer to CHoR and our Complex Care Clinic.
After all the time spent single-handedly managing Anna’s appointments and care, Shelby isso grateful for Dr. Tiffany Kimbrough, medical director of the Complex Care Clinic, and her team for coordinating all the appointments and treatments Anna needs.
“I say at least once a month that I owe Dr. Kimbrough and her team my life,” said Shelby.
Dr. Kimbrough has been caring for Anna, whom she describes as a feisty girl, since February 2025 and is so happy to be there for both her and her family.
“Our Complex Care Clinic seeks to be a soft-landing spot for families who are juggling life with a child with complex chronic medical needs like Anna,” explained Dr. Kimbrough. “Families are juggling so much, and our goal is to take as much of that stress off them as possible and place it back onto the medical team to make life a little easier. We want clinic to be a safe space so that families feel seen and carried.”
A safe place is exactly what the clinic is for Anna and her family.
“We have been incredibly impressed with the entire team, but especially Dr. Flora Szabo in GI and dietitian Andrea Spangler,” shared Shelby. “They have been incredibly responsive and timely for every single need. Also, Andrea is the sole dietician for over 12 GI specialists. She is a boss, and I have no idea how she is able to manage such an immense workload with such attention, affection and care.”
Because of Anna’s diagnoses the family has gotten to know providers in many departments and her mom says she always knows her daughter will get the best care.
“I’m always comforted when Dr. Frank Petruzella is our emergency department attending,” she said. “He has a personable bedside manner combined with immense trust in me as Anna’s caregiver and listens to me as the subject matter expert. We also love Jenna Brand, Anna’s urologist. She is attentive, knowledgeable and proactive in her role in managing Anna’s neurogenic bladder. Since we transitioned our urological care to her and finally found the right combination, Anna has finally been UTI free for 6 months!”
Making time for what matters most
Since the complex care team helps guide the family through their medical needs, Shelby says they can instead focus on what’s most important, watching their daughter grow and take in the world.
“She loves opening and closing doors and navigating her environment now that she’s an expert army crawler,” Shelby shared. “She’s becoming very interested in trying foods. Anytime someone walks into a room with food she’s locked in and hoping for a taste.”
Those moments and milestones show Shelby just how strong her little girl is.
“Anna’s resilience is beyond comprehension. She’s had over 10 surgeries in her short 2 years, eight of them being brain surgeries,” she said. “More often than not, she’s just the most content and happiest kid. I admire her so much. She’s taught me and countless others the power of resilience and prayer and is truly our medical miracle and gift from God.”