Abigail and Vivian’s path to Nemours Children’s was paved by challenges, each step bringing them closer to the answers they needed. Abigail, now 15 years old, was born with a neurogenic bladder, a condition where the bladder does not function properly due to nerve damage or dysfunction. This issue became apparent when the family started potty training her. For Abigail, this meant frequent accidents, infections, and discomfort, which were distressing for her and her family.
Though it seemed like a common and simple problem in a young child, her mother, Brittany, recalls, “I just felt like there was something more here. So, everyone agreed, ‘You need to go to the best children’s hospital.’” Despite initial hesitation, she knew she had to seek expert care for her daughter. “For us, driving to Nemours is about an hour and a half each way. At first, I was hesitant because of the distance, but everyone assured me, ‘No, this is your baby. You need to go to the experts.’ And so, we did. We made the appointment, and I was happy that we got in right away. I thought it would take months upon months, but we were able to be seen within a couple weeks of our first phone call.”
Upon arriving at Nemours Children’s Hospital, Delaware, the facility became more than just a place of treatment for the Hoellers; it has become a second home. “It feels like they’re our second family, especially Dr. Hagerty and the whole urology department,” shares Brittany. Over a decade of frequent visits, the family has grown alongside the staff, and the staff has grown with them. There was a time when they were making trips to Nemours as often as twice a week, which allowed them to form deep bonds with the medical team. One of their most cherished memories was when the entire staff called to sing “Happy Birthday” to Abigail. The genuine care and attention in that phone call brought a smile to Abigail’s face as she recognized the voices of her favorite doctors and nurses singing to her.
Abigail’s journey at Nemours has been marked by a series of innovative treatments. Her first surgery, a tethered cord release, was a collaborative effort between Dr. Hagerty and the division of neurosurgery. The hope was that releasing the nerves would improve her bladder function, but unfortunately, it did not yield the desired results. Undeterred, Dr. Hagerty and her team explored other options, including Botox injections, followed by biofeedback therapy. When Abigail was in first grade, Dr. Hagerty attended a conference where she learned about Sacral Neuromodulation, which is an implant likened to a pacemaker for your bladder. Despite the procedure not being commonly performed on children at the time, Dr. Hagerty was determined to not give up. “She told us, ‘They’re not doing it commonly on children yet. But, I know the woman who is doing it on adults. If I can talk with her, and if you’re okay with it, Abigail could be one of the first children at Nemours to receive this device.’ And we said absolutely,” Brittany recalls. The surgery was a success, and since then, Abigail has seen a significant reduction in urinary tract infections, a change that has been life-changing for the entire family.
Their younger daughter, Vivian, faced a similar but equally challenging diagnosis. She was found to have an overactive bladder. Like Abigail, Vivian’s symptoms became evident when she was having increasing trouble getting to the bathroom in time.
Vivian’s experience at Nemours has been equally impactful, though different in nature. Before becoming a patient of Dr. Hagerty’s, Vivian was diagnosed with transient erythroblastopenia, a rare condition that affects the regeneration of red blood cells. When Vivian was about a year and a half, the family brought her to Nemours for her care. Brittany remembers an extraordinary gesture from Dr. Hagerty during this time, “She somehow found out we were there, and even though Vivian wasn’t her patient yet, she came to visit us,” says Brittany. “Because of the condition, anyone entering our room had to wear a full hazmat suit. Dr. Hagerty, at the end of her long shift and after performing surgeries, got into all that garb just to come see Abigail’s baby sister. Talk about going above and beyond.”
Vivian’s care has primarily involved behavioral modifications and medications, and she is currently on her second round. This treatment has been remarkably effective, allowing her to control her overactive bladder and even make it through the night without needing to use the bathroom. “The medications have been life-changing for her,” Brittany shares. Vivian has also seen significant improvements in her ability to manage her bladder in the classroom, a crucial step in her development and daily life.
The Hoellers’ relationship with Dr. Hagerty and the Nemours staff has been a cornerstone of their medical journey. Dr. Hagerty has been a constant presence, offering support and innovative solutions. “She has grown up with us,” Brittany reflects. “She watched me through the pregnancy with Vivian, and when Vivian started having complications, she was there immediately. It turned from appointments for one kid to two kids at once, and the whole staff is so accommodating. They understand that I’ve got two kids, so they make all of our appointments back-to-back to avoid multiple trips.” This level of care and understanding has not only made their visits more manageable but has also provided a sense of comfort.
As they look toward the future, for Abigail, the next significant milestone is the replacement of her InterStim implant, which is not due for several years. “The battery life on the InterStim up to 15 years, and we’re just one year into her current implant,” Brittany explains. “It’s been truly exciting to see how the technology and science have advanced over the years.”
Vivian’s ongoing care involves regular monitoring and adjustments to her treatment plan. “Vivian has a Uroflow test every six months with Dr. Hagerty,” Brittany notes. “These check-ups help us keep a close eye on her bladder capacity, how much she can hold, and whether she can fully empty her bladder when she goes to the bathroom. We’re constantly collaborating with the team to ensure that Vivian’s progress is on track and that any necessary changes are made.”
Navigating the complexities of urological complications can often be an overwhelming experience for families. Brittany, who has been through this journey with both her daughters, offers this advice to others in similar situations, “Trust the process. It can be incredibly challenging, especially in the early stages when you’re waiting for a diagnosis and trying to understand the next steps. But it’s crucial to have faith in your care team. They are dedicated to your child’s well-being and are there to guide you through the healing process, not to cause harm. It’s okay to lean on the knowledge and expertise of the professionals at Nemours. We are Nemours proud, all the way.”
The Hoellers’ experience at Nemours Children’s is a testament to the hospital’s commitment to holistic, patient-centered care, ensuring that both Abigail and Vivian receive the support they need to thrive.
