Graduating the Whole Child Into Adulthood
April 2025
We are heading into graduation season, with emotional endings and exciting new beginnings. In pediatrics, we have graduations year-round. As most of our patients reach their 18th birthday, they move on to the world of adult medical care.
For years, Dr. Monica Mortensen would worry each time she sent one of her diabetes patients off to adult care. An endocrinologist at ѻƵ Children’s Health, Jacksonville, Mortensen knew that the 18-30 age range is a risky time for patients with chronic diseases like diabetes to have serious complications. When she would hear about a former patient landing in the emergency room with diabetic ketoacidosis, or one who had lost their insurance and didn’t know what to do, she would feel a sense of regret.
Medically, she had done the right thing. But health is much more than medical care.
Monica Mortensen, DO
So Dr. Mortensen took it upon herself to create her dream transition program, one that would give diabetes patients the tools they need to manage their own diabetes as an adult.
She hired Jenny Pfieffer, PCNS-BC, APRN, who has been with ѻƵ for 22 years, to design and run what ultimately became Building Up Independent Lives for Teens (BUILT). Now almost a year old, BUILT is one of the most innovative pediatric-to-adult diabetes transition programs in America because it encompasses the medical and non-medical factors that impact patients’ ability to stay healthy—what we call Whole Child Health.
Parents of children with diabetes are often very attentive to managing their care. But when kids move out, suddenly those parents are gone. Do these teens know how to get a prescription filled or contact their insurer? Do they know how to ask for workplace accommodations? Have they prepared someone around them to administer emergency medication if their blood sugar were to drop critically low? Do they know how alcohol impacts a diabetic patient’s body differently? Have they really understood the instructions the provider gave them?
Jenny Pfieffer, PCNS-BC, APRN
All young adults make mistakes and learn from them, but for people with diabetes, mistakes can have devastating consequences. That’s why BUILT patients meet with Jenny weekly, biweekly, monthly, or quarterly over at least six months to prepare for the transition.
Jenny uses a survey to measure each child’s knowledge about the science of diabetes, how to navigate a health system, how to manage insulin, and other health behaviors. She further tailors their curriculum based on whether they plan to go to college, trade school, or work. Her one-on-one sessions with patients can be virtual or in-person, and she offers early morning and evening sessions to accommodate school hours and activities.
She wants patients to enter the program as early as 15 so that when they get their driver’s licenses, they know about safety from a diabetes perspective.
“They may be nervous about getting to school on time, but if they get behind the wheel with low blood sugars, it’s as bad as drunk driving,” Jenny says. “They could badly injure themselves or someone else.”
The issue comes up again as diabetic patients enter the workforce. Jenny coaches the kids on how to explain to an employer that you may be late if your sugar levels make it unsafe to drive, and that the right to these accommodations is protected by law. One patient got in trouble with her employer for being on her phone; he was unaware she was using her phone to manage her blood sugar. Most people don’t think about communication skills as a medical need, but they are essential for maintaining a diabetic person’s health.
Jenny is also frank about risky behaviors that are very likely to come up in young adulthood—not to promote them, but to clarify the realities and dangers. She calls it her “sex, drugs, and rock and roll” talk. Alcohol may cause blood sugar to rise or fall, depending on the type of drink. Jenny wants them to know that for someone with diabetes, recovering from alcohol use is a 12- to18-hour process. She encourages them to have a “diabetes friend” at parties who can look out for them and carry rescue medications. She wants them to be aware that even something as seemingly harmless as dancing at a party will cause blood sugar to fall.
One special element of the program is its use of my favorite animal: dogs. (Jenny also established and still directs the Assisted Dog and Pony Therapy Program.)
Therapy dogs and ponies play a powerful role for many kids, acting as a social connector to help them feel comfortable talking about stressful topics. One girl who was afraid to put on a continuous glucose monitor finally did so after putting one (needle-free) on Charlie the golden retriever. Jenny also will talk about the health benefits of exercise while she and her patient walk Charlie or Lulu the labradoodle along the waterfront outside.
Lulu (left) and Charlie
“Transitioning isn’t just a handoff from pediatric to adult care,” says Dr. Mortensen. “It’s about a child learning to take responsibility for their own health, in the context of their own life.”
One way to think about success in pediatrics is that we want to deliver the healthiest possible adults. By helping patients confidently manage their diabetes alongside new adult responsibilities, Dr. Mortensen and Jenny are making a profound impact on the trajectory of their lives. I applaud their commitment to provide expert specialty medical care while considering the whole child. That kind of thinking is critical to our success as ѻƵ works to ensure the health and well-being of America’s future adult population.
About Dr. Moss
R. Lawrence Moss, MD, FACS, FAAP is president and CEO of ѻƵ Children’s Health. Dr. Moss will write monthly in this space about how children’s hospitals can address the social determinants of health and create the healthiest generations of children.