Monica Albert Still, BSN, RN: Living With Spina Bifida and Guiding Others Through the System

This article is part of a larger series of articles on the UPMC Adult Spina Bifida Clinic. Visit the series main article for links to other article in the series.”

When Monica Albert Still, BSN, RN, clinical nurse coordinator of the UPMC Adult Spina Bifida Clinic, was born, her parents were told not to expect her to live. In the 1960s, many infants with spina bifida were not offered basic, life-sustaining care. Shocking as that sounds today, it was a persistent reality for many decades.

“I was sent home to die. At that time, babies in the neonatal intensive care unit with spina bifida sometimes weren’t even fed, because the assumption was, they wouldn’t survive or have any quality of life,” Still says. “That’s pretty stark, and it wasn’t all that long ago when you think about it. But that dynamic doesn’t exist anymore.”

Instead, Still grew up and eventually became a nurse. Today, she coordinates patient care in the UPMC Adult Spina Bifida Clinic, guiding hundreds of patients through the same systems and health care dynamics she has navigated her entire life as someone living with spina bifida. Her generation was a turning point in the care of individuals with spina bifida and was the first to routinely live into adulthood and challenge the low expectations that were once built into the condition’s prognosis and the medical community’s general view.

Living and Aging With Spina Bifida

Living with spina bifida requires more than managing a congenital condition. It entails weaving that management into every moment of the day. There’s a subtle difference there that she emphasizes with her patients. She wakes up already considering her bladder and bowel schedule for the day, knowing that appointments, meetings, and travel have to be planned around them. Skin checks are routine, both in the morning and before bed, to catch early signs of breakdown that can escalate quickly if not addressed.

“Living with spina bifida is about being proactive. You can’t just go somewhere and assume it will work out. You’re always thinking ahead,” Still says. “That is a physically and mentally demanding construct that might mean mapping out accessible restrooms on a route to an unfamiliar clinic, confirming whether a building has elevators before committing to an event, or deciding not to attend something because the physical toll of the day would be too high.”

Fatigue is another constant companion, not in the sense of feeling sleepy but as a deep, cumulative wear that builds over days when demands pile up.

“You have to know your limits, and sometimes that means saying no to things you want to do,” Still says.

Her own medical care is an ever-present thread. She has had to change bowel programs to accommodate unrelated health treatments and adjust catheterization techniques after surgeries. Each new medical issue brings layers of complexity that interact with the baseline needs of living and working with spina bifida.

“It’s not unusual for me to think, wasn’t spina bifida enough? And then, like everyone else, you add on all the other medical issues that come with aging,” Still says. “It’s a lot for our patients to grapple with, which is why we spend a lot of time in clinic to address this effectively.”

Teaching Independence Beyond Medicine and Real-World Examples of the Work

These realities of living and working with spina bifida are why Still is so committed to teaching independence with her patients. In her role as clinical nurse coordinator, she does more than just instruct patients in catheterization, bowel programs, or wound prevention. She trains them in how to live as adults in a complex health care world.

“When you are working with an individual with spina bifida, maybe a younger person or just a new patient to the clinic, you have to teach them not just how to catheterize themselves or do a bowel program, but how to talk to doctors, how to deal with insurance, how to understand how a job might affect their Medicaid. Those things are just as important,” Still says. “A lot of that goes on well before patients enter adult care. But by the same token, we’re always in teaching mode regardless of a patient’s age.”

Still recalls working with a patient preparing to move out of state who had never managed their own medical supplies. Over several visits, she walked the patient through calling the durable medical equipment company, ordering supplies, and troubleshooting when something didn’t arrive.

“We did it together in clinic the first time, and then I had them call from home the next month. By the third month, they could do it without me,” Still says.

Another patient had to completely change their bowel program when starting chemotherapy. Still worked with the patient and their oncology team to find a routine that balanced cancer treatment side effects with the need to avoid constipation or skin breakdown.

Executive function challenges that some individuals living with spina bifida experience make these lessons even more critical. She has seen patients lose access to care or experience preventable hospitalizations because they forgot to follow up after an abnormal test or did not refill medications on time. Structured, repetitive teaching is, in her view, the only way to ensure patients are ready to manage their care.

What Providers Need to Know About People With Spina Bifida

Part of Still’s work in the UPMC Adult Spina Bifida Clinic is helping other providers understand the layers of complexity that living with spina bifida brings to health care. Adults with spina bifida will need all the same services as any other adult — primary care, cardiology, oncology, ob-gyn — but those services must be delivered with an understanding of how spina bifida affects the body and the course of treatment, as well as other nonhealth care-related issues that are just as important, like access and accommodations for wheelchair use or other individual needs.

Still often writes individualized care plans for patients with new diagnoses. One example of a plan outlined how a patient undergoing abdominal surgery would require specific positioning and skin protection to prevent pressure injuries during a prolonged procedure. Another explained why a bladder augmentation meant the patient could not be catheterized in the usual way.

“I write care plans so that everybody in the health care system recognizes what makes this patient different and how to individualize their plan of care,” Still says. “I can’t stress enough to other medical providers how profoundly needed that is and why.”

Her prior experiences with ob-gyn care illustrate some of the gaps that spina bifida patients can face. When she became pregnant through in vitro fertilization, some providers embraced the challenge and sought guidance on managing spina bifida during pregnancy and delivery. Others reacted with visible discomfort and uncertainty, particularly around anesthesia options.

“I had one provider who completely flipped out because they didn’t know what to do,” Still says. “Part of that is just a lack of training and exposure to this patient population. It is one of the things that I’m personally focused on with respect to education in the medical community at large.”

Still also stresses that preventive care cannot be overlooked by patients themselves. She routinely reminds patients about mammograms, prostate exams, and other screenings, knowing these are easy to miss when spina bifida-related needs dominate clinic visits or the discussion.

Generational Change and Peer Connection

As someone who grew up without knowing many peers with spina bifida, Still recognizes the value of connection with other individuals.

“I was told I was an anomaly. I didn’t know anyone with experiences like mine when I was growing up,” Still says. “You know, spina bifida is rare today just as it was decades ago, but I think now it can be a little easier to make connections, find resources, talk to other people living, working, and thriving with spina bifida. Again, our program places a huge emphasis on that because it’s just so incredibly important, valuable, and beneficial for the individual.”

Today, she encourages patients to connect with each other, believing that peer mentorship can fill gaps that providers cannot.

She has seen how younger patients often have more resources now, things like better mobility equipment and earlier access to specialized care but still face the same core challenges in managing adulthood.

“Peer conversations, whether about navigating Medicaid or finding accessible housing, can make a profound difference to people,” Still says.

Always Looking to Improve the Landscape of Care for People With Spina Bifida

Still’s vision for the future is one where every patient with spina bifida enters adulthood with the skills, confidence, and support to manage their health and their lives. That means starting transition-to-adult-care education early, training more specialists in spina bifida care, educating other medical providers on the complexities and needs of the patient population, and ensuring accessibility to that care is not an afterthought in any medical facility.

She hopes to see more formal peer mentoring programs, so no young adult has to feel as isolated as she did growing up. And she wants providers in every specialty to have at least a baseline understanding of spina bifida, so patients are not left explaining their condition in the middle of a health crisis or explaining the same things repeatedly without them being remembered.

“We want people to live their best lives, not just medically stable ones,” Still says. “That’s the goal. The model our clinic is built on, how it functions and why – we believe it is the way forward.”